By Joanna Bodner Keymaster
By Joanna Bodner Keymaster
made request for 2 free months via headache specialist. waiting for company to get the injection sent out. hopeful
By Joanna Bodner Keymaster
Sending you positive thoughts & much hope too! Good luck! Be sure to check back in & let us know how things progress.
It has changed my life! I have only had two migraines in the last 5 weeks, and I was chronic for 30 years before that. I just took my second dose last week. Sometimes I feel like my eyes are bothering me a little bit but I can take one Excedrin and it’s gone. This has truly been a miracle for me.
By Joanna Bodner Keymaster
This is truly AMAZING to hear! Wishing you much continued relief! Will you keep us posted? I really hope we continue to hear many, many more of these success stories like yours. Thank you so much for taking a moment to share this with us….we greatly appreciate it! Take good care.
Thank you, Joanna. I still have trouble processing that after everything I have tried and all the misery all these years, that suddenly they’re just gone. I’m a very positive person and I was hopeful that the drug would give me some relief, but this is just incredible.
I will certainly keep you posted!
I’m so happy for you that it helped. Did your doctor prescribe the 70 mg or the 140 mg? I’m doing my first injection today, but just found out it’s only 70 mg. not sure if it will work at this dose. Congrats again!
Same! Miracle for me. Just took second dose. Had trouble getting the second set of shots and sure enough every day migraine returned. Now I’m no longer worried about having a migraine. Had a twinge last night went away with Advil. That never happens. I’m having zero side effects and have to consider that taking a triptan pretty much every day for years also would have long term side effects. I’ll take my chances.
The stats on this poll are staggering. I would love to see this same poll in about a year or so, hopefully the treatment will be readily available and effective.
The stats are due to insurance refusing to cover the medicine and most ppl being unable to afford the roughly $7,000 yearly cost. Even the patient assistance program from the manufacturer only covers up to $2,700 per year so that doesn’t do anyone any good.
The day it came on the market I called my insurance company to find out If it was going to be covered. The person I spoke to had never even heard of it so he went searching for info. 10 minutes later he came back with a sorry, we aren’t covering it now, we won’t be covering it any time soon and no, sorry, there’s no way to get special approval or dispensation for a drug we don’t have in our database.
Ive called back since then. Nothing has changed. I’ve just become resigned to the fact that even though I’m taking Trokendi, even though I take the maximum of 9 triptan pills a month, even though I go through a full bottle of Excedrin migraine every month in addition to all that I’ll just keep having 10 to 20 migraine days every month forever.
Honestly, having this possible miracle medicine become available and not being able to get it due to cost barriers was the most depressing thing to happen to me since my husband left me for “being too sick all the damn time and spending all his money on doctors and pills”. I kind of wish I had never even heard of it.
Sorry to hear about your experience. The limit of 8-9 Triptans per month is crazy but I know the FDA and most insurance companies do impose that limit. I switched over to DHE-45 injections years ago, which works much better for me, I was having 4-5 Cluster Attacks per day plus Migraines. The DHE comes in 1 ml ampules (little glass containers) and I am able to reduce the recommended dose of 1 ml down to 0.35 ml, which means I can get 3 injections per ampule, allows me to day under the FDA daily maximum and still get relief. My doctor prescribes 30 ampules per month so I can maintain a reserve during those times I don’t need as much. Never know when the manufacturer will run out during shortages, which happens sometimes. Talk to your doctor about it, maybe DHE will be a better alternative?
I will have to ask. I’ve never even heard of that before. I don’t have a headache specialist within 2 hours of where I live so getting treatment of any kind is already difficult. There’s only 1 neurologist close by and he’s booked solid for a year. I’ll ask my regular doctor if he’s heard of DHE injections. I’m willing to try anything. Thank you!
That may be why the insurance company is not helping you also. I know the doctors have to do a lot of work on their end (coding, diagnoses) neurologists and migraine specialists know how to battle the insurance companies. I drive 2.5 hors to see my migraine dr and THE NEXT DAY after the FDA approved AMOVIG she was getting me on it. It’s a long way to drive every 6 weeks but it’s such amazing relief!
Unfortunately, I can’t drive sue to other health problems so I have to rely on others, specifically my ex-mother-in-law, to take me everywhere. She’s just no willing to travel that far in a single day to take me to an appointment, mostly bc she has health problems of her own. She’s in her 60s so I can’t really blame her. It’s just the way things are for me.
If you go on Aimovig website or call them they can send you a free trial. And they have some other program as well to help witbthe cost. I did the free trial and have had too many side effects. Have felt like death and my head hasn’t stopped hurting. Good luck
For eastcoasta, would you please tell me specifically what symptoms you’ve been having since the injections? Within 30 minutes to an hour of injecting myself I began vomiting and did so on and off for two weeks. Just had an endoscopy today and doc couldn’t find an ulcer or anything else. I haven’t been able to eat anything except bread or cream of wheat. I don’t know if Aimovig caused this or exasperated something I already had because my stomach had begun to hurt the week before but I never threw up. In addition, I feel physically drained and my ears have been ringing really loud. These two things I’m sure are due to the injection. I wish I’d never tried it. I’m interested in specific negative reactions anyone has had. Thanks for your help. 😊
Reply for ski59
Two weeks later still dealing with awful side effects nausea,dizziness,insane fatigue,insomnia,constipation, my heart races, shortness of breath and Migraines worsened. I also started a period a week after the shot that hasn’t stopped. Ive read of other women having break through bleeding On Forums on reddit. Also read others are experiencing hair loss. I WOULD HAVE NEVER INJECTED THIS POISON IF THEY WERE TRUTHFUL IN LISTING ALL SIDE EFFECTS! The half life of this poison is 28 days. Which means it will take a month for half of it to be out of my system.
Did you know Erenumab-aooe is produced using recombinant DNA technology in Chinese hamster ovary (CHO) cells. (Anyone feel the urge to run on a wheel) lol
Check out this article I read about this drug
Here is part of what the article reads. The researcher got this info from Aimovig website for healthcare professionals
In Studies 1, 2, and 3, 1.3% of patients treated with Aimovig™ discontinued double-blind treatment because of adverse events. Although only injection site irritations are reported by the FDA, the study indicates additional adverse effects, such as cold, upper respiratory tract infection, ankle fracture, viral gastroenteritis, sepsis, colitis, vestibular neuronitis, backpain, migraine, ovarian cyst, and sinusitis. One person also experienced cerebral venous thrombosis (see table 3). The most frequent injection site reactions were injection site pain, injection site erythema, and injection site pruritus—as per the label. Interesting to note that constipation and site irritation are listed as side effects on the label.
They need to list all the side effects and be honest at Amgen.
Additionally this same protein CGRP that Aimovig is binding to is responsible for protecting your heart, pituitary gland, thyroid etc. so I can imagine the long term side effects from this stuff. I WONT be trying it again. I can’t wait for this to be out of my system. So please don’t kid yourself in thinking these side effects are a coincidence or you picked up the flu. It’s this drug. You can also read others experiences on drugs.com
Hope you’re feeling better. I’ve lost 10 pounds because I have no appetite. So maybe years later they will repackage this for a weight loss supplement.
Thank you so much for your intelligent and detailed posting. I hope you did file a report to the FDA, as they are the only way that Amegen/Novartis will be compelled to tell patients of the true(and potentially) serious risks that the drug may cause.
If you do have a reaction to Aimovig, it’s unfortunate 28 day half life, translates to a terminal half life of 5 half lives. That means, if you do have a terrible reaction, your symptoms, even if they imporove, can last 140 days(until the drug clears your system)
Amegen is aware of the possibility of these severe reactions… They managed to “Lose” the first detailed report that I gave them on my serious adverse event after taking their drug(My Neurologist was infuriated by this). The report that you make to the FDA can not be “Lost”, and indeed, everyone who has a serious or long lasting adverse side effect should make a report.
At least now, I know that I am not the only one that has been negatively impacted by this drug… This gives me no solace, but inspires me to see that something is done to warn others. Thanks again for your post!
RE: CajunAngel “If you do have a reaction to Aimovig, it’s unfortunate 28 day half life, translates to a terminal half life of 5 half lives. That means, if you do have a terrible reaction, your symptoms, even if they imporove, can last 140 days(until the drug clears your system)”…
I’m confused by your statement. If something has a “half” life, then double that is the “full” life, AKA when it is fully out of your system. Why would it take 140 days to get fully out of your system if the med’s half life is 28 days? Did you get this info from a doctor? My specialist says I can switch to a different CGRP med after 60 days from my last Aimovig injection
Perhaps it is because the progression goes like this:
28 days from injection = 1/2 original amount
56 days from injection= 1/4 original amount (or 1/2 of 1/2)
84 days from injection – 1/8 original amount (or 1/2 of 1/4), etc. ?
I am editing the above. Based on my online search, I found additional info including a half life calculator and by plugging in 140mg and 28 days (672 hours), it gave me the following progression in hours which, if correct, equals 195 days!
672 hours – 70 mg / 50%
1344 hours – 35 mg / 25%
2016 hours – 18 mg / 13%
2688 hours – 9 mg / 6%
3360 hours – 4 mg / 3%
4032 hours – 2 mg / 1%
4704 hours – 1 mg / 0%
Source: Drug Half Life Calculator – Drugsdb.com http://www.drugsdb.com/resources/drug-half-life-calculator/#ixzz5UyspoZKe
And based on the below example I found elsewhere, it seems my hunch was correct:
For example, the half-life of ibuprofen is about two hours. This means if you take a typical dose of 400 milligrams (mg) of ibuprofen at, say noon, half of the dose, 200 mg, will have been eliminated from your bloodstream by 2 p.m. By 4 p.m., 100 mg will have been eliminated, and so forth.
It’s important to note that the expected half-life of a drug will vary from person to person, depending on factors such as age, weight, genetics, and even specific health issues. For example, the half-life of acetaminophen (the active ingredient in Tylenol, another non-narcotic pain relief medication), can be significantly affected by a person’s liver function since acetaminophen is primarily processed through the liver.
However, a 2008 study suggests there is debate:
Very good info on half life and correct by adkrauss:
Half life with medications are very misunderstood and most Dr’s don’t fully understand how they work. Pharmacists are more likely to know. If your taking 70 mg dose in 28 days it will be 35 mg, in another 28 days that will be cut in half again to 17.5 mg, in another 28 days it will be 8.75 mg, in another 28 days it will be 4.375 mg, another 28 days it will be 2.1875 mg, another 28 days it will be 1.09375 mg. These are all approximate since everyone’s half life’s vary a little bit. To be completely out of your system on average a 70 mg dose of Aimovig will take 196 days.
Thank you for your message. I was horrified when I read what this did to you. I hope you are doing better. I did go online and reported my side effects to the FDA. My side effects have finally lessened after a month. But one thing that continues to be a problem is my triptans aren’t working when I get a migraine and it’s making life more miserable. If all these potential side effects had been listed I would have never taken this medicine as I am already sensitive to meds. I just hope my triptans will work again and this medicine hasn’t screwed up my migraines.
Again hope you are better.
Eastcoasta, I’m so sorry for all the awful side effects you’re dealing with. We have one in common: my triptans no longer work at all either and if I thought I was in hell before, boy was I wrong! I am daily severe intractable and need abortives in order to go to doctors’ appointments, etc. I’m so scared that this is permanent. I don’t know what I will do. My last injection I did get 11 migraine-free days in a row but the rest of the month I was bedridden. I’d rather have 10 days that I can pick and use my triptans and be in some control than 11 days at the beginning of the month and no control. I just wanted you to know I share in your misery. Hang in there!
Kblange, thank you for your response. I did report my symptoms online with the FDA. It only took a few minutes. How long has it been since you took the medicine? Have you stopped the medicine? I will NOT be taking another shot of Aimovig. I’m praying to god as the days go on my triptans will work again. It’s been 30 days since I did the 70mg injection. At least the nausea, dizziness, insomnia, have calmed down. Still have muscle/joint pain and worsened migraines. Really praying your meds start working for you again as well. This is awful.
Thank you for sharing. Fortunately, my Neuro has ample reports of side effects that he is treating cautiously. I’m seeing more “side effects” that I’ve personally been suffering but not attributing to Aimovig. I’m about to take a break after three months!
Thank you so much for your reply ❤️ I identify with your symptoms so much! The insomnia and insane fatigue are driving me crazy! I’ve had every test under the sun and the doctors are now saying I have IBS. To blame this on IBS, is say BS!! IBS flare ups typically last 2-4 days and nit 2 months. Plus how do they explain the severe ringing in my ears since injecting myself with this poison? Every doctor I have told I believe this to be due to injecting myself with Aimovig doesn’t believe me and simply shrug it off. Extremely frustrating! It’s time for me to start showing them posts like yours so they can see that I am not the only one with these issues post-Aimovig. I hope you are feeling better and that all of us suffering get well again. I wouldn’t wish this on anyone!
I am 7 weeks out since the only shot and still dealing with effects. And triptans worked the other day and today I’ve doubled up and still not working. A few days ago I had the most severe pain in my arm I couldn’t move my arm. Your doc is ignorant to not think this has something to do with the aimovig. Join the many groups on Facebook and you can read all the experiences people are writing in on there. Some are getting very sick, infections, all the same side effects everyone is writing in on here. Tell your doc to read the FDA approval report online. People had side effects in the trials. Many even dropped out due to adverse effects. I cannot wait for this to be out of my system. I am so depressed from the effects for the last 7 weeks. I’m sick of it! Like I needed things to be worse! Good
Luck to you. Hope you start getting better soon.
Oh how I feel for you! I was injected about September 30th and haven’t been able to return to work yet and the doctors are wanting me to go back to work. I was given one more week and I’m hoping I feel well enough by then. I still am suffering severe insomnia and the ringing in my ears is so loud it’s driving me crazy. A doctor gave me Ambien to help me sleep but the problem is that now when I take any medication it makes my ears start ringing even louder. I never had that before Aimovig. This drug is a nightmare! I will definitely start reading the comments on Facebook about it. I hope you feel better soon.
Ski59-Im so sorry, I can def relate. I did my only shot on 25 Sept and I am counting the hours for this to be out of my system. According to the half life calculator I should be down to around 22mg left in my body and I am still not right. My triptans are still not responding, still have fatigue and muscle/joint pain. I just hope there are no lasting effects. This stuff stays in the body for 196 days. Every 28 days it has a half life. I feel for ya, I know exactly how you feel. I hope you feel better soon!!!!!!!!!!!!
I started having terrible nausea and bad headaches right after I took the 70 mg dose. Nausea lasted for two weeks straight. The fatigue and constipation was soon to follow. The worst of my problems started one week after the injection when my vision went blurry for anything close up and was sensitive to bright lights. I had to get super powerful readers to try and keep working and multi focus readers to see my computer screen. Called my neurologist and he told me to first see my eye doctor. She did a full exam and told me that my eyes have lost their ability to focus and asked if I have taken any new medications lately.
I told her about the Aimovig injection. She couldn’t find anything about side effects like what I was having, but said she thinks it is what is causing it. It has sense started to get better and I have been able to wear my glasses from 4 years ago. Which is crazy strange cause that would suggest it has actually improved my vision. The glasses I got 6 months ago are still too blurry for me to wear.
I’m so glad I only did one 70 mg and will never try it again.
I am so happy for those of you that it has helped. I hope and pray nobody has the experience I did.
I also was afflicted by vision problems. Within 3 hours of taking Aimovig, I noticed I was “Seeing Funny” I didn’t realize what was actually happening, but it was an inability to focus.
Because this symptom continued for over a month, upon my neurologists suggestion, I went to the ophthalmologist to be evaluated. I had no lasting damage, and my vision has slowly improved as Aimovig is slowly eliminated from my system.
The eye dr. had to rule our Optic neuritis, which was a side effect that happened to at least one of the patients in Aimovig’s clinical trials.
I hope you are feeling better as time goes on…
I’m so sorry for all you’ve been through. The company seems to really want to help people like you. Besides the two month free trial they have something called the bridge program for people whose insurance won’t cover the cost. I’d give them a call and see. The number is 833-246-5708. Good luck!
ChronicallyEverything and Ellen, I’m really sorry to hear about your situations. Have you downloaded and read the Aimovig paperwork available on their website? Because at the bottom of the patient page, there is a section for qualifying for assistance for Aimovig based on income (I have a relative who has a lower income and gets a REALLY expensive drug for another condition for free). I would at least download the form and see what you might qualify for.
Actually no, I haven’t. Thank you so much for letting me know about this! I just looked at the basic information on the website, got all depressed and gave up. That’s why I so love this community and why I am eternally thankful that my ex at least pays to keep my internet on so I can continually have access to you fantastic people! I am going to hit the library Monday (my head is already killing me today and tomorrow is my 3rd of 3 injections in my back and hip to not even come close to helping the pain from 2 slipped discs) so that’s the earliest I can do it, but at least I have something of a plan now.
Thanks again! There’s hope to be had! 💖💖💖
OMG we must be twins. Besides the impossible task of trying to obtain aimovig, with my Doctor trying to help, My husband left me (after 39 years) in April, saying he was tired of my migraines leaving me unable to do things with him, and he left…after 2 days of trying to reason with him. What a curse we have.
Im so sorry to hear that! That is a fear of mine also bc I have an autoimmune disease since 2nd child. It is a curse that we have. I pray you find relief and tgat you find someone who really will love you in sickness & in health. God Bless. ❤
Very sad that we migraine sufferers are not taken serious by the insurance companies. This disease is debilitating, it is a sin that a medication is available but not affordable
I took my first injection a little over 2 weeks ago. So far migraines & Cluster Headaches have been reduced by over one half and even my nerve pain from neuropathy has been reduced. I’ve been chronic with these for 15 years now, not gone completely but reduced which helps.
I did get Thrush in my mouth in the first week possibly caused by the immune system reductions. My doctor gave me Fluconazole 200mg Tablets, which got rid of it within days. I’ll have to see if this is a recurring side effect with other injections going forward.
Keep everyone posted on the long-term as I plan on giving this the full treatment.
I’m delighted it’s working for you! Did you get the 70 mg or 140 mg dose? I’m about to do my first injection and am disappointed that my doctor prescribed the lower dose. Not sure it will help. Congrats again!
I got a dose of 70 mg on 6/15. Because I am 65 and did not reach chronic or transformed migraine until I was 63, I was not part of the group tested in the studies. I was doing OK with my other preventives, Botox, diet, meditation and exercis–getting maybe 2 migraines/week when I took the injection. I was thrilled at first 10 days w/o a migraine and then only a low level migraine. But just a few days after, I got the worst 3 day migraine I had experienced in years. Since then, the migraines are back to every other day so far–still early days. I also got facial itching and a little rash on my face so was concerned about allergy–Zyrtec and Benadryl took care of that. Not even sure if the allergy was due to the injection since it appeared a few days later and never got any worse. So unless the next injection or a higher dose can help me, I am not currently in the success column
I saw my Neuro two weeks ago and completed the forms to have my Aimovig delivered to my house.
He said the pharmaceutical company is holding the strings tight and the local pharmacies will NOT BE CARRYING IT AT THIS TIME.
I filled out a form and my Neuro said the maker is anxious to get it on the market and he reports the co- pay has been approximately $5 for most of his patients.
I can’t wait for it to arrive. For someone who for years, injected DHE IM with a 1 1/2” needle, a delivery method similar to epinephrine seems easy.
CANT WAIT TO GET MY MAILED DOSAGE. There was no discussion with my Neuro,that I remember, about dosage. I wasn’t even aware that it came in different doses and am hoping I’ll be getting the highest dose.
Right now I either get admitted to the hospital, depending on my mental status, or get an out patient IV DHE cocktail for 3-5 days depending on how much I’ve been suffering. In fact, we discussed setting up a monthly infusion for three days.
But alas, we’ve been discussing Aimovig for months now and we’re anticipating it would be available the earliest mid May. I had a regularly scheduled appointment mid June and that’s when I completed the paperwork for home delivery. I’m expecting a miracle package any day.
Good for you and like me after taking DHE injections for years the Aimovig is easy stuff. The 70 mg dosage is the starting one, if after a few months you don’t get enough relief you doctor needs to prescribe the 140 mg dose, which is basically 2 injections of Aimovig. This is a new drug and it will take time to determine the right dosage for everyone and possible side effects. Good luck with it. I started mine on June 15th with good results so far. My migraines have been reduced by over 50% so far, doc said it may take a few months to get complete results.
Thanks for the info on the two doses. I’m disappointed that I got the lower one, but it sounds like that’s standard protocol. Did you get relief with the 70 mg dose?
I’m not familiar with DHE infusions. What are they and more importantly, do they work? I’m entering week 6 of Aimovig and losing hope. Everyone who has posted about it seemed to have gotten almost instant relief. Next month we are trying the higher dose but I need to keep searching for other options. Thanks for posting this list.
My doctor did not discuss different dosages either. Nor did anyone at the Aimovig Ally program. I haven’t tried it yet. I rec’d it from my pain mgmt doc. Want to discuss with my Neuro before proceeding. Still waiting for my 2 month free samples.
I FINALLY got my injection pen this morning. My doctor faxed my info on June 7. Since then I’ve been given the run around every time I call. (I’m doing the free trial.) I know beggars can’t be choosers, but it would have saved me a lot of energy and headache if the company had been honest from the beginning. They finally told me the demand is overwhelming and that’s why it took almost a month to get. So just an FYI for anyone waiting….be patient and don’t get your hopes up until the specialty pharmacy calls with a delivery date. Now that I passed the first hurdle and received it, fingers and toes are crossed that it will help!
Has anyone had success with the 70 mg injection? Just got my pen and am disappointed that my doctor prescribed the lower dose.
I have taken my second month shot about 2-3 weeks ago. I should be getting my third month shot here in a week or two! In the first month I saw a difference in my headache calendar. Aimovig has sliced my migraines and headaches frequency in half as well as the intensity. I used to max out my rescue meds and nausea meds weekly. This month I’ve only taken them one day thus far!!!!
*My neurologist says you can get up to one year of Aimovig FREE if your insurance won’t pay for it, while Novartis is waiting to see how the insurance companies are going to pay, and also pay for Aimovig plus Botox.
She has Aimovig ordered for me, and they are supposed to call me when it is in. (They want to teach you how to use it the first time there at the office.)
She has been giving Aimovig plus Botox!
*There are no contraindications between Botox and Aimovig!
She does feel like the insurance companies will try to pay for one or the other, but not both within a specified time frame.
This medicine was not recommended for me because of my latex allergy. Primary care doctor has referred me to a neurologist (again).
I am hoping for some relief soon because this round of migraine had lasted 20 days.
Oh that sucks. I’m sorry yo hear about the allergy and the 20 day stent. The longest I’ve ever had is 43 days long so I know where you are coming from.
I had a migraine for over 3 months and the Dr put me in the hospital to have a DHE, 6 treatments in my IV every 8 hours and still did not get rid of the migraine.
It feels like my life has been turned upside down. I am no longer able to work and most of my days are spent staying in a dark room where it is quiet.
My neurologist and I have filled out the paperwork and sent in to get my first free doses of the drug. We will see how it works (or doesn’t) for me. I will be happy to try it and hopefully not need as many preventatives and triptans to stop the migraines.
texaseve, I’m glad you have the paperwork all filled out! Please keep us posted on how you’re feeling after the first doses. I hope this treatment gives you some much deserved relief. -Sarah (Migraine.com Team Member)
Had the cgrp (aimovig) injection on the 13th of July 2018. I am very hopeful for all of us who suffer from this invisible disability. I have been a chronic migraine sufferer for the past 30 years. I will post again in a couple weeks.
Hi fellow silent sufferers.
I have bee getting (M) as I call them for 31 years. It crept in and destroyed any hope of “career” back then. Mine were always severe. Lying in bed, without moving, sleeping or eating for 4-8 hours with medication. I have had a Hysterectomy and thought” this could help!” It didn’t. I had a severe (M) while in the hospital and the nurse put an IV into a muscle instead of vein.
I could go on and on about these sad stories. But for now, my ONLY medication that has worked Amerge is failing. It is not covered under ANY Insurance since 2015. When a special request was sent by my Dr. to my Medicare Supplement Insurance; it cost $445.00 for 6 pills. (2 headaches for me).
I now order from outside the USA and recently the “government” is trying to close down this one
place for me to afford my medication. I do not know what I will do since I have tried everything, I mean everything
My Dr. told me that it is mostly for tension type, mine are not stress related, so when I was younger and healthier I was willing to try it then. Not now at 73 and dealing with several age related conditions.
I recently had a 10 day (M) with several 2 hour windows as I call them, to function for each day. That enabled me to feed my animal companion and clean up my home a bit.
The vertigo, blurred vision, nausea and other muscle and bone pain just floored me. I became totally hopeless and depressed. Who wouldn’t? I hate when people tell me to think positive. I know, they do not understand.😢
I have another appointment to make with ‘my who knows how many’ Neurologists I have seen. Hoping for him to find a way for me to try CGRP. Having Medicare can hurt me even more. I do not have false hopes, but the “Golden” years for me are more like “Life” in jail.
OK, a Jail, I was able to decorate to accommodate my ill fated (M). But never-the-less a kind of prison.
I used to have many friends and some social life. Now; my life is shopping for food, cooking and freezing it for after the (M) attack. Oh yes, watching as many movies as I can.
Even reading can now trigger one. I used to read a hundred books a year.
I apologize for my venting. But most of you will understand. I hope.👵
I completely understand. I’m 43, a single mom and I can’t work be sure of my migraines and other conditions, but it’s mostly the migraines that mess up my life. They’re so unpredictable, so uncheckable, so invisible to others and I feel like I’m not believed when I say how bad my pain is or how many days I’m bed bound bc of my migraines.
I will always listen to a fellow sufferer vent and complain! I don’t mind it at all. Nobody in my real life wants to hear about my headaches, but online I’ve found that others are willing to listen. I am never going to ignore someone in need of being heard like I’ve been ignored for so long.
I also understand about your Medicare. I have/had/have/had (it’s a complicated process to get and keep it here in texas) Medicaid and the number of doctors who actually accept it are few and far between. I’ve been able to find general practitioners but not a single specialist of any kind within an hour of my rural location will accept Medicaid because they don’t have to. There’s no law saying they must and because there are so many ppl and so few specialists it’s the doctors who are in the position of power here. We patients have no power and no choice. It’s really really sad.
I hope you’re able to get somewhere with your Neuro. I don’t have access to one lol. I’ll keep my fingers crossed that you find relief. 💖
Hi, all.This is my first post. Yesterday my neuro signed me up for Aimovig. She was in a hurry (I was last patient of the day on a Friday) and I didn’t get to ask many questions. When the Aimovig nurse (?) contacts you to arrange to deliver to your house, is that your time to ask questions?
I’m 83 and have had migraines daily since I was in my 30s. I know what started this changed life, it but it’s a long story. (Fortunately I have a wonderful husband; if I didn’t, I’d have left this vale of tears (look how dramatic I’m being!) long ago. Anyway, here’s my first question. People say how many migraines they have weekly or daily. I wake up with one virtually every day and for years and years no one gave me any painkiller, so I had a constant migraine. 24/7. Then I got a good doctor who put me on butalbital w codeine and caffeine, 6 a day, and after a life of hell, I had a perfectly normal life. I believe he saved mine.
But codeine is an opiate. So he, under pressure, I’m sure, cut my codeine in half. So now the headaches are back, but of course not as constantly as before– just half the time.
I’m shocked to hear Aimovig will cost almost $7k a year. Hey, I have family and other expenses, some ongoing, some anticipated that we’re trying to save for (we’re old and can’t stay together in our house forever).
I’ve gone on too long. I’m just distressed and confused. If I took Aimovig and it made my head hurt less of the time . . . for $7k/year? What is the right thing to do?
I don’t believe I can find another doctor who will return me to enough codeine or other painkiller to give me my life back. They will say “rebound headache” even though for many years I had constant agony with zero medication to rebound from.
This is awfully disorganized. I think I don’t know what I’m asking, exactly.
ER, go online to the Aimovig website. There is a program called Aimovig Ally where eventually a company representative will patiently give you the information you need if you decide you want to use this once a month. The first 2 months are free courtesy of the company. That may mean 2 free 70 mg doses or 2 free 140 mg doses, depending on what your Dr prescribes. I would expect that he would prescribe the lower dose based on your age, since they did not do much testing in older population (I am 65 and have taken it 2 mo w/o a problem and with about a 50% drop in migraines but I am still on other preventives, and watch my diet, etc). If you have private insurance, it is possible that you will qualify for a low monthly co-pay. If you have Medicare like me, it is more complicated. Talk to Ally about that step-by-step. Your Dr. has to request the medication from Medicare and ask for a non-formulary exemption, stating the reasons he believes you need it. Assuming Medicare denies it again, then you need to appeal. I have not got that far yet. If that appeal is again denied, then you may qualify for assistance through Amgen if your annual income with your husband is less than appx 73,000. If you are not working, you have to show your income via tax returns and whatever else Amgen is willing to accept. As someone else has said, there are more of these CGRP drugs that are awaiting approval soon, and at least one of them is quarterly injections–unknown if that makes it less expensive. A pill is also being tested–do not know what phase. You may be able to get into a drug study and get the medication for free if there are open test sites near you–although I have heard so far that the injection is likely better than the pill–but I have no medical knowledge–just heard that from someone. I hope you get your relief. You have amazing patience
Maureen52, I’m sorry for taking so long to thank you for your thoughtful, informative reply to my July 28 post. It’s all moving slowly. My doctor at Montefiore left off my diagnosis code when she submitted my Aimovig application and I kept waiting to hear from Aimovig. When i finally called them and spoke to a really nice fellow named Jerry, I learned that my paperwork had to be supplemented. That’s now been done.
My current concerns are that I must find a reasonably close-by neurologist who accepts Medicare, will be willing to be my ‘Aimovig doctor,’ which, I see from your good practical advice, will probably involve asking the new neurologist “to ask for a non-formulary exemption, stating the reasons he believes [I] need it.” . . . then there would be an appeal. And then attempting to apply through Amgen.
Our beloved internist since 1983 won’t become involved (he considers MABs to only rarely have bad side effects but in those rare cases, they can be serious so need close and frequent monitoring. And he’s not, after all, a neurologist).
So at this point, I’ll be looking for a Medicare-friendly neurologist in the area who doesn’t know me but who’ll take me on and be willing to work with me re trying for the non-formulary exemption and appeals to get the cost below $575 a month. When I type that out, it gives me the feeling that I should keep also in mind this information from you: “…there are more of these CGRP drugs that are awaiting approval soon, and at least one of them is quarterly injections–unknown if that makes it less expensive.”
And maybe the law of supply and demand will help. There will be a greater supply.
Again, Maureen, I’m grateful.
A question for some of my fellow migraineurs who’ve been on painkillers like codeine and others for decades and are getting old (as I said, I’m 83) are any of you worrying that your “senior moments” are getting more and more frequent to the point where the dementia concern is entering your mind and you’ve worried about a possible connection to opioids? I hasten to say this — my grandmother, mother and sister all suffered from significant dementia and never had opioids! Also, a medical friend says that pain and sleep deprivation can have negative effects on memory, too. Damned if you do, damned if you don’t . . . . . .
I am in month 4 of Aimovig. I am very happy with my response thus far! Still have the daily migraines ( have had them for the last 2.5 years and migraines in general since age 13) but much less severe and I am taking much less medication.I am also starting to be able to get together with my friends and family members and do things outside of my cool dark room. I consider it a great success! It has not been without some HUGE HASSLES however! Aimovig Ally tells you they are there for you and wI’ll do all the work for you to get the medication to you, get the insurance issues taken care of etc. DON’T HOLD YOUR BREATH!! I have spent Hundreds of hours on the phone with them and the speciality pharmacy to get the medication. And I am a NURSE. I can’t imagine how a layperson could navigate the system!! This being said, I would like to gI’ve a couple tips to help if you are having issues getting Aimovig.
1. The free 2 month trial and the patient financial assistance program for the 1 year’s worth of medicine are 2 SEPARATE programs. You and your doctor may have to complete the paperwork a second time for the year long assistance program. Call the Ally support as soon as you get your 2nd free dose to start the process! ! Talk to ANY counselor, don’t wait for your assigned counselor to call you.
2. The specialty pharmacy people are not the same as the Ally support people. Do not take Ally support program people word for when drug will come. You need to call the pharmacy. Keep their phone number!! Once you get on the year assistance program, they are able to set up shipments via text messaging. This may save you hours on hold!
3. Don’t be afraid to ask to speak to supervisers! And write down their names, ask if they have a direct extension to call back. Try to get the person you are speaking with to commit to calling you back with information if they are not able to give you what you need.
4. Plan to spend TONS of time on the phone, following up, to make sure you able getting your Aimovig. Mark on a calendar what date you did your injections, as well as every phone interaction you have.
It is ALOT OF WORK- -BUT we all know migraine medication aqusition is never easy or straightforward! Best of luck to you all and know you are not alone!
I get my Amerge in a generic (Naratriptan) from Costco for $46 a month. I have to tell them not to run it through insurance or it’s more expensive.
They don’t always have it on hand but I’ve not had to wait more than a few days to get it.
There are 2 companies that make a generic, one is $46, the other $150 so ask them to double check if there is a lower cost option.
Since I’m not using insurance my Dr can also give me more than 9 pills, it’s been a life saver!
I hope to try Aimovig one of these days but since I’m on Medicare I can’t get the discount through the company.
Reading these comments is giving me hope for better days so everyone able to try it keep us posted!
Ellensr, I am so sorry that you can no longer get the med you need. I wanted to say that I am 71 and have gotten Botox injections for several years without any problems. I was worried too, as I am very sensitive to meds…a frustrating problem when you have chronic migraine.
Perhaps you can start at a very low dose and see how you do? I have to say that it hasn’t helped me much. My first neurologist gave the best results, but he retired and the two that followed just don’t seem to hit the right spots. Some months are better than others re the Botox, so I keep it up.
I am approved for Aimovig so will be starting that in November. Are you considering it? Hope you feel better soon. I have had a dreadful migraine all day. The only thing that helped was Cefaly, but only for the hour I used it. But I will take that 😉
I’ve been on it for two weeks and so far zero improvement. Am I the only one? I’m worried because the only posts about success seem to all indicate success comes soon after you start the medicine. I would love to hear from anyone who took weeks to notice an improvement or had to take the larger dose. Thanks!
I read your post and see myself so clearly. We have travelled much the same road. I am 47 and have been doing the battle since 15. I wish you continued strength. I wanted to comment on the Amerge. It has long been my rescue when I’m down days at a time. It does come in a generic now and my co pay is $7 for 12 tablets/month. Once it went generic my cost dropped from $30 co pay. Please ask your dr to send in for the generic Naratriptan. Best of luck
How come people are just hearing of this medication, and it’s already going to generic. That’s what is so upsetting. I have had migraines for 30 plus years, 58 now and dont see them ending anytime soon. Doctors really dont know much and dont want to listen to us when we go to them with information. Frustration just brings on more migraines. At least that has been my experience. I wish all of you painfree says ahead. I hope your I insurances will cover this medication and that we get the treatments and respect we deserve
Do you mean Aimovig? It was just approved by the FDA for treatment of a wide range of migraine types and is a completely different type of medicine than what we have had access to before now. I’ve not heard of any kind of generic since this medication is truly newly approved by the FDA the creator should have at least a 10 year copyright on the formulation since that’s the industry standard feom what I remember. Now there are other companies working on their own versions of this type of drug, but they are just bringing their own versions of it, not generic versions. For all we know at this time the other versions will cost around the same as Aimovig give or take a few hundred dollars a year. So as much as I wish the other formulations coming out were going to be generics they aren’t. They’re just other formularies of the same type of drug.
After waiting 5 weeks, took the first 70 mg shot on Friday. Weird side effect is extremely orange urine and what feels like a yeast infection. Anyone else have this side effect?
Hoping the meds work and side effects disappear.
Hi Paris. My urine was not orange like yours but did turn a strange yellow color and I definitely got a yeast infection which I never usually get unless I’m on an antibiotic.
I am 71 yrs old and have had migraines since age 5. Currently my migraines are due to medication over use (MOH) due to months of taking 1/2 amerge every morning because of always waking up with a headache. My neurologist prescribed Amovig and I injected 3 weeks ago without any results. Then I read in some Amovig literature that the clinical trials did not include people with MOH. Is the only way for Amovig to help me is if I withdraw from triptans? Any comments would be much appreciated.
Reliefnow, that’s a good question. It seems like the only thing to do is try for a while and see if it affects you or not. If you are currently withdrawing from triptans and experiencing MOH, you might have to give it some time to get past that to see if it’s going to help in the long run. Having done the MOH thing, it’s no picnic and I’m sorry. Are you doing any infusions?
Just got my first Aimovig injections today (I’m on 140mg.) Took three weeks from date of prescription to arrive. Super easy and didn’t hurt. No word yet on insurance. Doctor said to expect it to take 8 days to start seeing results. Fingers crossed!
Thank you LindaBlackmon. Only rescue meds I have are triptans and that’s what I’m withdrawing from (starting tomorrow UGH). I do have migranal spray but my neurologist tells me to try not to use it. Never heard of using Thorazine but my withdrawals are so brutal that I will ask my neurologist about it. The only other thing I use is amitripiline to try to settle me down and help w that sense of desperation that it’ll never go away.
Thank you for your comments. I’ve never taken any infusions. What medications are you thinking about that I would take via infusions?
You would have to discuss with your doctor about what meds would be appropriate/safe, but there are lots of different things you can get in an infusion.
To shamelessly copy a awesomely informative post of Nancy’s:
There are many types of infusions that can be used to break a nasty migraine cycle. Some medications include, but are not limited to;
Brand name Decadron, or dexamethasone
Brand name Depacon, valproate sodium
Brand name Inapsine, or droperidol
Brand name DHE-45 or dihydroergotamine
Brand name Keppra or levetiracetam
Brand name Phenegran or promethazine
Brand name Regaln, or metochlopramide
Brand name Ultram or tramadol
I take phenegran and tramadol everyday and neither help with my migraines. Meanwhile I still have the same headache I had now 3 months ago. I was so close to going to the E.R. last night but toughed it out because they always look at me like an addict looking for a fix.
They usually give me magnesium and depacon, sometimes DHE and zofran as well. I’m really sorry both of your attacks are lasting this long. I get really long ones, too, and I know it completely drains you.
I avoid the ER unless we just can’t control the vomiting or something’s crazy-wrong. My migraines tend to rebound horribly so if you give me steroids/benadryl/painkillers/triptans (all the stuff they try at the ER) you can make me better for like 4-8 hours, but it comes roaring back worse than before and we’re back in the same boat. The cocktail I’m infused with doesn’t work immediately, but slowly seems to calm the thunderstorm. DHE is the only thing I take that can cause rebound, and it’s generally better about it than triptans.
I think Nancy takes a different cocktail of meds when she gets infusions, too. Different things work for different brains, and often, having things delivered by IV can be more effective. I take Mag orally every day, and both my neuro and the infusion center nurses admit while it does something, it’s known it doesn’t work nearly as well as IV magnesium.
My physician suggested that I take Tramadol no more than 3 days straight to prevent rebound headaches. Have you tried taking your rescue meds some too? When all else fails, I have thorazine to take. It knocks you out, but somehow resets the brain.
I am a 50 yo mom of two grown up men. I have suffered
With migraines for 30 years. I have been to Several
Neurologist and Headache Specialists. The one I am seeing now for my severe migraines that occur 27/31 days a month or more. These are all encompassing migraines. Most land me admitted FOR IV DHE drip over 23 hrs. Sometimes I need a second bag of the same. I have tried many drugs, treatments, complimentary therapies, standing on my head,
Steroid injections in my neck, novacaine injections on my face,head,neck. Etc. You get the picture. As soon as Aimovig came out I knew I wanted to try it. My headache specialist office gets free samples and the nurse Practitioners can administer it without a charge in the office.
I thought I saw God!,,
My Dr. And I discussed all the percentages, did this really work, which clinics are using it a lot and how are their patients feeling. Typically a small percentage start to feel
Better in the first two weeks, the % increase from there
To the first 28 days. Then my md mentioned some patients
Who had not felt any better yet to begin feeling better in month 2. Then after month 3, you can discuss with your md
Which dose to stay with.
The percentages of improvement get only slightly better on the 140mg dose.
I will end with this statement- I’m approximately 3 weeks post Aimovig 70mg given in July. Today is August 11, 2018.
Today is the first day OF NO MIGRAINE on a rainy day in
MANY YEARS FOR ME.
Don’t give up! If this doesn’t help, there are 2 others drugs
Coming to market end of 2018 and 2019.
Best wishes for all with migraines. May you get relief. 😎
Beachbumgirl. Your migraine story and comments were SO helpful to me. Thank you. Continued good luck with the Amovig.
Aimovig 70 mg on 8/23/18. Hard to believe this drug helps so much!
It had decreased my migraines by half. When I reached
The 3rd week after I got the first dose, I started a new migraine.
So, as of today, I was given Aimovig 140mg yesterday,
I have the worse migraine of my life x 7 days ( it started
Before the Aimovig did)
I went to the ER 8/22 to see if they could help me.
Not ever doing that again!
My headache specialist said you lose a little bit of the med
.”by the end of the month. This time. I’m glad I’m on the
The stats I saw released by Amgen at the end of June for reduction of migraine days were:
50 percent or more: 67 percent on 140 mg and 53 percent on 70 mg
75 percent or more: 42 percent on 140 mg and 27 percent on 70 mg
100 percent reduction: 13 percent on 140 mg and 6 percent on 70 mg
To me, it seems more than just a slight increase of people who improve on the higher dose versus the lower.
From the stats posted above by Gardensatnight, the double 140mg dose has provided SIGNIFICANTLY better outcomes for individuals. I will inquire with my neuro and with Aimovig, since the initial 70mg dose over two weeks ago has not provided any benefit and indeed I have had some of the worst migraine days in a long time since I took the dose.
I have received 2 injections. And the third one is the last day of the month. The first two days after the injections were fine. Then the five to seven days after that we’re bad with headaches. Has anyone else had this happen? I don’t know whether to tell the nurse or wait for the third to see if it happens again. Also I had the same number of headaches the first month as the last month before I started it. Am I the only one? I am receiving 70 mg dose. It also seems like my migraines are worse quicker. Thanks to everyone that is sharing. I read these blogs and try to learn from everyone good and bad that might help my fight with this.
I would definitely report these issues.
RainorShine, I’ve only had one round of injections, 7 days ago, 140 mg dose. Disclaimer: my doctor said it would take at least 8 days to start working, and I also have a comorbid condition (SIH/CSF leak) which I know is active at the moment and impacting my migraine.
That said, I also felt pretty okay for a day or two, then have had headaches… of course, I’m chronic intractable.. so I pretty much always have headaches? Has it made anything completely go away yet and turned me into a fluorescent-light loving butterfly? No. I did start to get a migraine over the weekend (well, got one), and it only lasted two days!! (mine have been going on 12-14 days recently) and only got to pain level 6. So I’m still cautiously optimistic and keeping a careful calendar so I can track data. Also, I’m at week 12 on botox at the moment, when I’m normally a disaster, and am only getting level 4 daily headaches by the end of each day.
I did the 2 month free trial and it was great. The first month I only saw small improvement but month 2 was amazing! I had my life back to a great degree! Then month 3 happened. I am still fighting to get my dose on the bridge program! It has been pure hell! I started working with the Ally support program mid month 2 to make sure they had everything they needed because my insurance company denied coverage. It is now the 19th of month 3 and I still have not been approved or shipped my 3rd dose despite frequent calls to Ally and the speciality pharmacy. I have spent HOURS on the phone ( on hold for 1hr just to get to a person at the pharmacy ) and it is excuse after excuse. I have spoken to various people, asked to speak to supervisers and still no one can tell me when I might be getting my 3rd dose. Since this medicine works by building up in your system, I am back to square one once it finally dose come. And who knows if I will have the same problem each month?? It is such a great drug… but what hassles I am having!!! The life of a migraineur.
Has anyone taking amovig had any unusual side effects? I find that the side effects on the drugs I’m taking for migraines are almost as terrible as the migraines but in such a desperate state for relief.
I have taken 2 months of Aimovig. I did get constipated about 1 week after each dose, but otherwise I did not have any side effects. The shots did sting when I injected them, but I don’t think it was any worse then a flu shot.
I am having terrible side effects since my first shot a few days ago. Dizzyness, nausea, Insomia, and worst of all the worst migraines of my life everyday. That are not responding to my meds. Aimovig website only mentions constipation. There are reviews on drugs.com where a lot of people are having a terrible time with this. I wish I knew how to get it out of my system faster. I was reading the CGRP plays a role in protecting the heart, melotonin, pituitary gland etc. I read an article from a physician that stated blocking this receptor needs to be studied more.
I can’t wait for this to wear off. If they had posted all these possible side effects I would not have taken this drug.
Here is are recent reviews of people who have used this
I injected my first dose of Aimovig on Monday, today is Friday, and I have had almost constant nausea since a really bad headache Wednesday night (one of my worst ever). I know it’s not listed as a side effect but this is not normal for me. Has anyone else had this issue?
Check your blood presssure, if you haven’t. Feel better. (((hugs)))
I had botox 8/15 and my first Aimovig injection 8/27. I have consistently had a migraine and my fibromyalgia flared since 8/27. Currently on my second day of steroids to break cycle. Is Aimovig not for me? Do I try again? Does it have to build up? Is it ineffective for me because I have fibromyalgia. So, disappointed I really want to feel better.
dodgers1fan – You should read through this forum in some detail. Many people, including myself, did not get any benefit from the first dose and some, like me, believe that the Aimovig may be inhibiting the effectiveness of the abortive/rescue meds when I migraine has occurred after the Aimovig. However, it does need to build up and I believe has a half life in your system of 28 days. My second dose (increased from 70mg to 140mg) is to be delivered today and will administer it tomorrow while at home for the weekend.So dont give up on it just yet, as I am also trying to remain optimistic hearing many people here that it appears to be helping.
I injected two doses of Aimovig Thursday evening, 8/16. I pretty quickly felt my blood pressure go up, and it was 165/105. I have pre-existing hypertension, so I’m going to be more sensitive to that side effect. I took my normal dose of blood pressure meds, and it came right on down. I was in the middle of a run of daily migraines, and I haven’t had one yet since taking the dose. It’s a bit early to be celebrating, but it was like I felt something in my brain right after I took the shots. Maybe it was just the blood pressure. But I think that’s essentially what it does, is prevents dilation of the vessels. So I’m unfortunately optimistic. Set up for heartbreak!
I also have stage 4 colon cancer in my liver, and I travel for treatment. Very expensive. Someone stole a $500 check made out to me today. Urgghh!!! What is wrong with people?!?
I administered my first 70mg dose of Aimovig about 2 weeks ago and so far, no relief from my intractable migraines (25-30 days per month). Have been suffering for decades but last few years have become almost daily. 55 years old and have tried most everything. No side effects apparent yet form the Aimovig. I noticed when reading the instruction leaflet it mentioned the 140mg dose, which I will inquire about if the 70mg does not give any relief. I thought I was going to get the first two doses in the mail at the same time, but only received one. Is that everyone else’s experience?
I took the 140mg dose for both trial doses, as my pcp did, not feel I would respond to lower doses as I have intractable migraines as well. The first month I saw minimal results, but the 2nd month was wonderful! I had some symblance of a life. Then I ran into a snag trying to get month 3. Still waiting for it, but really want it because I did see enough change that I want the drug again. But as I said, I took the 140mg dose. As far as getting both doses at one time, that’s not how they ship it. It is shipped one dose at a time. Maybe your doctor will change your dosage to 140mg and you will see imorovement.
Adkrauss, I am also chronic intractable. My doctor started me on the 140 mg. She didn’t think the 70 mg would do anything. I have not had my daily headaches go away, but they have been much less severe, and rather than have 10-14 day migraines, I am now having less severe 2 day migraines. HUGE improvement, even if I still have some pain most days.
Thanks nana55. I am glad to hear you have experienced some positive results from the 140mg dose and wish you luck in obtaining the third month from Aimovig. Keep us posted.
Has anyone experienced extreme nausea/vomiting days after your first aimovig injection?
I had nausea for the first 5 days. Not extreme, but fairly constant but it seems to have cleared.
OMG – I did 140 ml dose (2 shots) in my doctor’s office and I am still taking candesartan as a preventative, but I have had 5 days with NO migraines!!!! I was having a migraine every other day before. I even had a couple of drinks at the office summer party – I never drink because it’s a big trigger, but I wanted to really try this out. With all the heat and sun and drinks – still no migraine! I can feel the start of them – the tension in the neck and slight pain on one side and then it just goes. Poof! No migraine. I am over the moon. I’ll report back after a month. No side effects, other than extreme happiness and lack of pain.
ok – a follow up to my first post. Had a migraine last night and relented and took my Relpax. But 1 migraine in 7 days is really good for me. Felt exhausted before my migraine, but my postdrome is not as bad as usual. I am feeling optimistic!!!
Anne, I am so happy for you and cannot imagine how it must feel. The rest of your story all rings true for me. Here’s hoping your road to “recovery” continues to head (pun intended) in the right direction…
I just started the 70 mg Aimovig about 3 weeks ago, and so far am sad to say I have seen zero improvement in my chronic migraines. In fact, the last five days have been such bad migraine days (probably due to weather/barometric pressure). I’m so disheartened!! Does anyone here have experience with it starting to help only after the second injection? Thanks!
Ditto on my end. Got the 70mg shot last week, and no positive response to Aimovig.
For the past 7 days I had only one migraine that dissipated on its own… which is about what my regular average looks like prior to Aimovig.
On the 6 days since injection that I did get migraines, they’ve been much tougher to fight off. Where I could make a migraine go away with 1/2 a 40mg relpax, on 08/19 I had to take my emergency meds 3 times that day. I don’t remember the last time I did that.
Every migraine I’ve got since the injection has been much tougher to fight.
I just got off the phone with Amjen to report my migraines being much harder to break since my second injection. I mentioned others have had similar reaction and the representative encouraged anyone with this problem to report it. She took it very seriously. Even wanted the lot number of my pen if I still had it.
I don’t know direct number for reporting side effects. Icalled 833- 246-6844. Here’s a trick for faster service. Dial extension 7431 and then just wait for next representative.
Adkrauss, you are so right! I’d need my white noise machine on. Any sound drives me insane!
Same here. Along with a lot of other side effects. My head has hurt since the injection!
TallTiff, I can relate. I didn’t feel any improvement until week 6. (I’m in week 7.) and even that’s just been a reduction in the severity and duration. I’ve had no migraine-free days. So I’m disheartened too because it sounds like people are getting immediate success. But we’re upping my dose to 140 mg. for my third injection and I’m hopeful that will do the trick.
Hang in there. Hopefully, in a few more weeks you will start getting some relief. Keep us posted.
Thank you for sharing your progress! I am glad you are seeing some improvement, and hope the higher dose will tip you over into more significant relief!! I will definitely keep you posted, and please do the same.
I’ve been on Aimovig for nearly 3 months now. The results have been astounding. I went from 10-15 migraine days per month to less than 4. This has been life-changing.
Tallguy… Those results certainly are astounding and very encouraging. Did you start to see/feel results in first month after injection and are you taking 70mg or 140mg dosage? Best of luck going forward !
I’m using the 70 mg dose. My chronic migraines cleared up 6 days after the first dose. They came back just before my second dose, and cleared up 6 days after the second injection. I took my third dose a few days early and didn’t get another flare up. The half-life of the medication is 28 days, so levels build up during the first 4-5 months of administration.
Hopefully I’ll never go back to the days of chronic migraine. They were really rough. I’m currently tapering off my long-time preventative medication (candesartan) and so far it’s going well.
The results with Aimovig have been truly amazing. I hope it helps you and many others. I should note that years ago I had relief from Botox injections, administered every 3 months. But the chronic migraines returned after 3 treatments (9 months after starting). My neurologist thinks I may have developed neutralizing antibodies to Botox. I’m hoping this doesn’t happen with Aimovig.
Thanks Tallman/Sean. As to med building up, I wasn’t aware of that half-life figure and am interested in learning further about that aspect.
I had the same problem at the end of my first dose. The amount of Amovig in your system by the end of the month
Is only about 32%.
I had a 9 day migraine that needed steroids before my second dose kicked in. My specialist gave me the 140mg
Dose (70 mg x2) for the second dose to have more in my system by the end of the month. I still needed steroids to
Calm things down before the Aimovig kicked in.
Hope it continues to help.
I took my first round of Aimovig two weeks ago, 140 mg dose.
It’s definitely doing something. I still have some sort of headache at some point most days. So I have not turned into this miraculously headache-free creature. HOWEVER, I’m chronic intractable with migraines that usually go 10-14 days lately, don’t respond to anything but multiple rounds in the infusion center, and leave me so immobilized with pain, I just can’t move. I’ve had daily headaches, plus the two stronger attacks I’ve had have only lasted two days each, and only got up to a 6 or so. Much more manageable. I’m very encouraged so far.
GardensatNight, your story sounds very similar to mine. I have daily severe intractable migraines that prior to Aimovig ranged from 8-10. 7 week’s into the 70mg dose, daily range is 5-7 plus shorter duration. But I still get a few 10s and like others have mentioned, they are much harder to break since starting the Aimovig. I’m trying the 140 mg dose next week and am cautiously optimistic that it will help even more.
What do you get at the infusion center?
Wishing you continued improvement!
I get depacon, magnesium and sometimes (neuro doesn’t want me having it too often), DHE and zofran at the infusion center.
I have found the migraines breaking up EASIER on Aimovig. They two I’ve had have broken up on their own after two days. (fingers crossed, knocking on wood this continues.)
Chronic for 23 years. I got my trial August 13th. It took 6weeks to get it. The trials are only 70mgs. It’s just like using an EPIPEN. Upon use, I got an immediate migraine and got very flushed, but it subsided within a few hours, so I decided to go to the grocery store. While there I got the worst headache I’ve ever had, (though not where my typical migraines are), I abandoned my cart and left. While driving home I lost vision in one eye and the other eye went blurry, I pulled over and had to have someone come pick me up. I was down for about a day and a half. I haven’t see a reduction in my headaches (it’s only been 10 days) and my doctor plans to premedicate before the next shot and see what happens. I’m not losing hope. I can’t, this is my Hail Mary.
Dana- I developed an excruciating migraine later that day I first received Aimovig 70mg. It took 9-10 days to break.
I feel for you.
I hope it was short lasting and the Aimovig is helping.
Dana – I am sorry to hear of your experience with Dose 1 but do not give up hope. There are also a few more similar but different meds on the horizon which my neuro thinks will have even better results overall. I believe this a big part of why Aimovig is pushing this “campaign” to get entrenched users (not a criticism).
Can you tell us if you ever experienced the blurry vision you describe prior to taking the Aimovig?
Adkraus, can you tell me more about why your neuron thinks the other drugs might work better than Aimovig? I’m daily intractable and at week 7 getting some relief but not enough to function. Plus severe migraines harder to break. Am upping to 140 mg but I’m starting to lose hope. It seems like so many people got immediate relief. So I’m very curious about the other drugs and how they differ from this.
kblange, I cant tell you much more this second, but here are a few links to articles. Very generally, (and I may have this reversed) he said while Aimovig works on the CGRP receptor, a couple of other meds close to market work on the CGRP antagonist, or something to that effect.
Yes, I’ve heard a similar account from my neurologist, which was confirmed in a review article on the subject. CGRP is a signaling peptide that cause vasodialation, and levels in people with chronic migraine are often elevated above normal. Aimovig is an antibody that binds to the CGRP receptor. Most competing products (which haven’t been FDA approved yet) target the CGRP peptide itself. Some experts think targeting CGRP may prove more effective than targeting the receptor, but this remains unproven.
Tallguywithmigraine, do you know if we can be tested to see if we chronic migrainers do have higher levels? I’d hate to waste my money if I don’t have elevated levels.
Hi, Well after waiting 3 months for the golden chalice (aimovig) and hearing many excuses about why it taken so) damn long..
after (My Neuro told me about aimovig 2 yrs ago. I heard for the 4th time is should come any day! I called my pharmacist to check that my paperwork was in order and he said “Oh no problem. And I can have aimovig here tomorrow! 2 doses. WHAT I said? He said you mean the magic migraine medicine..ha..ha! But one thing to know he said, it will cost you $850, yes that is $850, and no insurance, Novaritis, not free, no-copays apply maybe later. Given how desperate we all are, sick of waiting in pain, I said OK, go for it, order it. And it came the next day, yesterday. I wasn’t sure how much to take, my doctor gone for the weekend, and the Aimovig directions kinda unclear, I injected both…better too much than not enough? I just took it 20 hours ago so too early to tell, but this community board has been so helpful! Thanks all!
Loraine – I hope the Aimovig is your golden chalice and provides a benefit to all. Dont understand why you paid $850 for the initial two doses when it should be provided free from Amgen. Are you saying you couldn’t wait and your local pharmacy had the meds in stock? Sounds like you got the first two monthly doses at one time and took both together. Do you know if they each were 70mg or 140mg ?
Hi, Yeah, I meant to say I had been waiting since May, when neurologist faxed my paperwork to Amgen, said it should take about a week. I only received some pamphlets in the mail from Amgen. My neurologist office contacted them about the delay, and the company said they had been slammed with requests and to wait. Now its the end of August and my Doctor was still trying deal with this increased delay. I had been told that the initial doses would be free, until Amgen had worked things out with our insurance companies. I called my pharmacist (who I’ve worked with for 30 years) to alert them they may be hearing from my doctor or amgen, in regards to aimovig and to call me. Thats when my pharmacist told me they had received no information from Amgen, tried my insurance, nothing. So I thought, well I’ll have to keep waiting, and pharm. guy informed me the pharmacy could get from a distributor at full cost next day. SHOCKING, really, but I was so sick of waiting I went for it, pain is a big motivator! Both autoinjectors were 70 mg each, so I just got a full dose.
Loraine, did you call Amgen to confirm they received your paperwork back in May? I wonder if someone in the doctor’s office messed up filling it out (Amgen said many doctors were forgetting to fill out and sign all the sections) or fax it in. Mine was faxed in mid-July, and it only took them three weeks for them to send me my first free dose. I do understand they are backed up, but it wouldn’t make sense they would be three weeks backed up in July and still haven’t gotten to requests filed in May.
Call Amgen on the Aimovig.com website and they can help you reduce that cost. If you gave yourself 140 mg, stay with that dose. It may take up to 6 weeks to kick in but give it time. GoodRx. Has a discount you may find in your doctors
Office or neurologist office.
I hope this helps. The highest prices I was seeing was $575 or so.
Good luck, Carol
Thanks so much!
Adkrauss, those articles were very helpful and VERY hopeful! One drug is expected to come out in October. And you were right. Aimovig acts on the receptor. The other drugs work on the molecule itself.
Also at least two new rescue meds in stage 3 trials as well.
You’ve made my day!
And you made me smile kblange – – which is not so easy to do these days. See also tallguys response which provides a perfect summary. Note of course there are articles discussing safety concerns, like all meds. Here is an excerpt from recent Science Mag article:
DESPITE SUCH ANECDOTAL SUCCESSES, some migraine researchers don’t think it’s time to celebrate yet. If CGRP “really is a fundamental mechanism, you would expect a much higher proportion of patients to be completely free of attacks,” Ferrari says. Safety also concerns him because of CGRP’s natural role in dilating arteries and maintaining blood supply to the heart and brain. “Theoretically, if you block CGRP you could translate a minor stroke or cardiac ischemia … into a full blown stroke or heart attack,” he says. So far, the companies say they haven’t seen that or other significant side effects in the several thousand people who have completed phase I and II trials, but the drugs have only been administered for up to 6 months—not long enough to judge long-term effects, Bigal says.
The trial results confirm that CGRP is a major new player in migraines—and perhaps even the fundamental trigger—even though the chain of events remains murky. “We don’t really know what’s going on, but we have some ideas,” Russo says. One view is that the increased amounts of CGRP released at the start of a migraine sensitize the trigeminal nerve to what are normally innocuous signals, resulting in inflammation in the nerves that is relayed to the brain as a pain signal.
In that scenario, Dodick says, a migraineur’s brain is like a car with a heightened alarm system that “goes off simply because you walked close to it.” In the end, the brain reaches what Sigal describes as a “permissive” state, in which normal light becomes very bright, normal sounds very loud, “and you can smell a perfume two blocks away from Bloomingdale’s.” CGRP-binding antibodies help turn down the volume in the trigeminal nerve, by “mopping up” excess peptide or preventing it from binding to and activating cells, Dodick proposes.
I’m delighted I made you smile. They’re a rare commodity around here too.
Thanks for the article. I may regret writing this, but I don’t care about the long term effects. I have an almost constant migraine. I have no life. I am90% bedridden due to the migraines. So my goal is pain relief in the short term. To me is about quality of life not quantity. And thanks to the articles you sent links to, I am very hopeful that my quality of life will improve. Thanks again!
Hi everyone linked together with this unfortunate malady;
I can relate totally. I am just hanging around waiting for the next one. I have chronic intractable almost daily migraines. for over 31 years. I have stopped talking/writing to most of my friends because I am tired of hearing how busy and active they are. Vacations and alike. I can say, oh well, I was able to tend to my basic needs this week once and was out of it the rest of the time. No one really understands.
They think it is a pain in the head.😧 No, it is the whole body hurting sick with muscle, joint and pain. Vertigo and blurred vision and nausea. You can’t sleep or really rest, and oh, the terrible predrome and postdrome symptoms that make your life all about the migraines. Vacation, what is that? The last time I had fun was when I had 3 days of normalcy (with nothing to do or anywhere to go) and knew the big one would surely follow. It did. I have some hope in spite of my ranting.
I wish for all of us to rejoin the rest of society and flourish.
Ellensr, I completely get what you mean. I deactivated my Facebook account because I just could stand seeing everyone going out to restaurants and taking vacations and having lives while I’m bedridden over 90% of the time from migraines.
And when I don’t have a headache I’m so filled with anxiety waiting for it to come on that I can’t enjoy myself very much.
But I too have hope that we all will soon get our lives back.
Kblange, I understand completely and most of us with intractable migraines will feel similarly. When your in the midst of a bad migraine, your spouse could run in and tell you the world is ending outside and you will just want to lay in silence (me with full blown ice and heat packs and ear plugs in) and not move, speak or process.
kblange, I am glad to hear they appeared to take it seriously and from now on will keep my pen lot no., etc. That is the main number I have called several times, but not familiar with the extension you mention. Will try it however, because I have waited on hold for a while the last two times I have called.
It’s my “case “manager’s extension. But she’s never once answered it. LOL. it does cut down on my hold time though. Significantly. And the company blantantly lied to me over and over in the beginning so I don’t feel bad giving it out. Actually they lied to me again just the other day.
Did they contact you to schedule the 2nd free dose or did you contact them?
Any. The specialty Pharmacy should contact you about a week before your next injection. If you don’t hear from them you should call Al I support and let them know. I do know some people I’ve had a lot of trouble getting their third injection when they switch over to the bridge program but I haven’t heard anyone having problems getting their second injection which is still a free trial. Good luck!
I’ve had three injections. The first two were 70 mg and I didn’t notice a difference. Last week I had 140-two injections. I’m noticing a shift, one migraine this week compared to three average and that’s with Botox. Migraine doc said this is reflective of what their trial is showing.
Cleajoy – glad to hear you appear to be experiencing some benefit. You said last week you had “140- two injections.” Can you clarify that. Did you mean your third dose was one 140mg injection?
The 140 mg dosage is simply two of the 70 mg auto-injectors. So if you’re prescribed 70 mg, you auto-inject one pen. If you’re prescribed 140 mg, you auto-inject two pens.
I’m due for my third injection this Friday. Pharmacy hasnt called to schedule my delivery so I called Ally yesterday only to find that I probably wouldn’t be getting my third injection delivered for at least 3 more weeks.I have daily severe intractable and for the past 4 days have been migraine for the first time in ages. If i have to wait 3 more weeks I will have to start over and that is unacceptable. So I asked to speak to a supervisor and explained my situation. She spoke to I believe it’s called the escalation Department and a miracle occurred. The pharmacy just called and I’m getting it delivered on Thursday. So my advice to anyone running into this trouble is to ask to speak to someone in the escalation Department. The person I spoke to who was so helpful was named Jessica. I hope this information will help others not have to wait this completely unacceptable long wait.
Kblange, I am glad the delivery delay was resolved and thanks for providing that important advice. Yes, 3 week delay is completely unacceptable. Perhaps if there is any good news, its that Amgen and other pharmas will truly realize the demand for a cure is there. Obviously, they have access to the statistics regarding the millions who suffer, but reinforcement is good…
alkrause, happy to help! I might be writing a Survival Guide to Aimovig Ally for my migraine neurologist’s other patients. I hate the company but (drum role please) I think the drug might actually be working. Since Friday my pain level has been 0-5 with most leaning towards low end. Prior to Aimovig it was 8-19 every damn day. Hope u didn’t just jinx mysel!!
Can someone tell me how to start a new thread in this forum? don’t see a spot for it. Thsnks
Since I woke up at 2 AM and could not fall back to sleep and I was having difficulty breathing. Nostrils are swollen; I know what is coming. I just do not know when,so taking medication to stop it in it’s track is very difficult.
Does anyone else have extreme insomnia before a (M)?
I am so anxious about my appointment in Oct. After reading all the post; both positive and negative I am worn out.
12 days since two shots of Aimovig and I’ve only gotten 2 migraines! That’s great for me. I feel like migraines are trying to start, but then they never do. I am really optimistic. I’m also allowing myself to be optimistic – I know I’ve been so hopeful for so many treatments over 37 years of migraines, but I’m willing to be hopeful again 🙂 From what I’ve read, the more months you do with Aimovig, the fewer migraines you get (if you respond well to the Aimovig).
Anne, I’m so delighted to hear how well you are doing. I just had my first 140 mg injection on 8/30 but I’m optimistic that over the next few weeks I will have the kind of success you’re experiencing. Even on 70 mg I had the same thing you described; many times I could feel a migraine starting to come on but it never did.unfortunately , this didn’t happen often enough. But I’m cautiously optimistic that all I need is the higher dose to be on my way to success.
Wishing you continued success as well!
Reporting in – it’s been 3 weeks since my first injections – 140 – I’ve only had 3 migraines in 3 weeks!!! I get the start of migraines, but if I don’t take my abortive meds they go away on their own. Aimovig is really working for me! It’s also interesting how much energy I have – constant migraines really wore on my body – I had about 15 a month. I’m also still taking Candasartan as my preventative as directed by my neurologist.
That’s amazing! To be able to feel hopeful again would be truly wonderful.
8/23/18 was my first dose of 140 mg. Finally working. 😊
Mostly headache free. I had a headache 2 days ago that
2 pills of Aleve took care of. I could not believe it!
Hoping it still works well throughout the month and at the last week, that is when I had a bad migraine with the 70 mg.
No side effects. Happier with the higher dose. Time will
Tell. Considering I have Chronic migraine, I am optimistic.
Happy Labor Day weekend. May we all be migraine less.
8/23/18 was my first dose of 140 mg. Finally working. 😊
Mostly headache free. I had a headache 2 days ago that
2 pills of Aleve took care of. I could not believe it!
Hoping it still works well throughout the month and at the last week, that is when I had a bad migraine with the 70 mg.
No side effects. Happier with the higher dose. Time will
Tell. Considering I have Chronic migraine, I am optimistic.
Happy Labor Day weekend. May we all be migraine less.
Carol, I’m thrilled for you! Is this your third injection? Did you get any relief from the lower dose? I too am a chronic migrainer. Finally started to see improvement on lower dose in week 7 but not enough. On 8/30 I had first dose of140 mg. I’m very hopeful that this will do the trick.
Please keep us posted on your continued success.
Hope you can enjoy Labor Day weekend!
That was dose #2. I am due for dose #3 140 mg on 9/23.
Many less migraines. If I get any, 2 Aleve take it away. One
Night I had one migraine about a 4-5. One Toradol took care
Of that. I’m still making good progress.
I am really hopeful hearing stories that people improved more as time went on. I’m on week three of my first dose and it’s definitely helping my pain levels and giving me some bearable days rather than just this long block of intractable migraines. Waiting to see if with more doses, I’ll start having any pain free-days or reduction in trigger sensitivity.
I started Amovig 2.5 months ago with significant success. After the first week on it (70mg) they started going away. By the second month I went from ~15-20 migraine days/mo to two days over the second month and were very mild.
I’ve been trying to get my 3rd dose for over 2 weeks. Delayed due to Aimovig communication of bridge program approval to distribution and inventory shortage. I’ve been told for a week now that it’s in queue to ship and hopeful to deliver next week.
My migraines came back full force ~35 days after second dose and back to sumatriptan injections and naproxen.
I haven’t noticed any side effects from Amovig and seems to be the first solution in my 30 years of migraines. Weather (pressure) change is my trigger.
Glad it’s working for you! I’ve had nearly two weeks of only very mild, intermittent headaches. Definitely making a difference for me, even with only one dose.
I’m getting the same story from Amgen about delays with shipping and inventory issues. My second dose is going to be late. They’re telling me I’m in the queue as well, but can’t give me a tracking number. Who knows how many days/weeks I’ll be delayed. I guess you can’t really complain when something is free. They’ll get things sorted eventually, I’m sure.
Did my 1st 70mg injection Aug31st. No changes to speak of. Just getting over a 3 day migraine complete with nausea and cognitive issues. Still have my fingers crossed that changes happen into month 2. My insurance did pick up my script at a $50 co pay(totally worth it if it works) so I’m hoping it will not cause delays when filling the script. I am concerned about the necessity of consistent medicine after reading all the posts. I know my body is sensitive to change. Hopefully the company will be able to catch up to the demand as so very many of us are ready to start living life.
I’m on Week 9 and it’s pretty clear that this is not the drug for me. I’m so happy for those of you who have found relief! I’m just not one of them. Someone, I think it was alkraus, shared a link that showed when the next drugs are due to come out. Could you please repost it? I think a new CGRP is coming out in October and I want to be first in line!
Kblange, I am sorry to hear that you do not seem to be getting any benefit from the Aimovig. Here are the links I previously posted:
So for my update:
Dose 1 (70mg) exactly one month ago and no relief whatsoever. As discussed, I have had some of my worst migraine days in a long time since taking the Aimovig, especially since my usual abortive (imitrex tab and injectable) were not working as in the past.
A couple of weeks ago I had my neuro put in a request to up my dose to 140mg. Was told by Aimovig case manager to have him fax to them an edited page two of the application, just changing dosage and call the special pharmacy to advise of the requested change. He did both. Last week I called Aimovig and after an hour plus wait on the phone (wait time issue discussed below) rep confirmed they received the fax but said I would need to check with the pharmacy. After a couple of unsuccessful attempts due to wait times, I got someone on the phone who said they had no record from my neuro. I told her that I was advised he would need to call them with the dosage change and not fax anything. She put me on hold and then either hung up or we got inadvertently disconnected. I tried back and after holding left message to call me. Days later no call back from them!! I called Aimovig yesterday and waited AGAIN over 45 minutes. Spoke to case manager who agreed to call the pharmacy with me on hold – – for another 35 minutes. She came back to advise that she spoke to a pharmacy supervisor and arranged to fax them the form my doctor sent raising dosage. She also told them to escalate it to priority as I am overdue for second dose. She said they will call me in 48-72 hours to arrange for shipment. We shall see…. At best, I will likely be close to a week behind schedule regarding administering second dose.
I laid in to her about the outrageous phone delays and the fact that I had left several messages after long waits and NOBODY HAS EVER CALLED ME BACK days later!! Told her that many people are reporting these delays, including in shipment and that while the program Amgen is offering is fantastic – – it means nothing if they cant execute. Emphasized that if people have delays getting their follow-up doses, they will have major setbacks given the med needs to build up in the body. I intend to pass on this message to Amgen, if I can find an email contact. Good luck everybody.
Adkrauss, am having the same trouble with getting Amgen to actually send out the Aimovig. I’ve called five times now, on hold for an hour each time. The people I talk to are perfectly polite, but I’m basically getting politely lied to, because every time they say it will be shipped out on X date, and then that doesn’t happen… so I have to call back… then get a new date, then it doesn’t happen AGAIN…
I’m going to be at least a week late to take dose #2 at this point, and that’s IF they send it late this week as promised, which I am not counting on.
This drug is working great so far after just one dose, and I am super-hopeful and I don’t mean to sound like a brat when I’m getting this for free. I do wish they could figure things out as far as distribution and supply. Like you, I feel frustrated when they say they will call back and don’t and when you have to call so many times and spend so much time on hold and still can’t get the dose shipped. You have to be super-vigilant, and even then, your medicine comes weeks late, which makes it hard to judge if it’s working or not when you’re not following the correct dosing schedule. But I feel kind of like a hostage, because it’s the first thing in forever that has reduced my pain level, which is great!
Adkrauss, first off thanks bunches for reposting those links. I will look at them when my migraine allows. I had same experience you described when switching to higher dose and going from free trial to bridge program. Because I was lied to countless times, I don’t mind sharing how I got my shipment on time instead of three weeks overdue. First ask to speak to a supervisor named Joanna. She’s wonderful. If she’s not available ask to speak to someone in the escalation department at both Aimovig and the pharmacy. Don’t count on anyone calling you back. They won’t. Be pushy and persistent. It helped I think that I told them how great the drug was (not true for me but it’s better than before I started) and I couldn’t imagine having to start from scratch. Oh, ask for Jessica in escalation department. She’s a migrainer herself so she gets it but don’t count on even her to call back. No abortive works for me anymore. That coupled with only one migraine free day in ten weeks is why I’m jumping ship when next drug comes out. Hope this info helps. Thanks again and good luck with the higher dose!
I have been waiting for close to 3 months. Though I have been calling to follow up. They have said my two boxes are going through, case worker is working with insurance.
My girlfriend applied 1.5 to 2 months after met yet received her two boxes right away. I have called Aimiovig and McKesson numerous times and they all say the 2 boxes and insurance process is going fine. Still no phone call or box.
Hi fellow Migraine Sufferers… I was first diagnosed in 1974 with Migraine. Since then, I have tried every medicine to prevent and treat attacks. I was really happy to hear of the FDA approval of Aimovig, as it had no contraindications and the side effects were listed as nominal.
I was the first person my Neurologist prescribed this new drug to.
On July 29th I took 140 mg of Aimovig
within 2-3 hours I noticed that my vision was blurry and I started feeling feverish.
The next night, I woke up at 2am and felt like I couldn’t breathe and had a red rash on my face neck chest and arms. I went to the ER. After treating me with Steroids and Benedryl they released me 5 hours later.
Every day after this, I started feeling sicker and sicker, and eventually my Neurologist wanted me to go to the hospital.
I ended up spending 4 days in the hospital.
My body had a severe response to Aimovig. My Immune system recognized the drug as a poison, and made antibodies to destroy the drug. Problem is, that Aimovig not only binds to the target protein, but it also binds to random proteins in your body. Once in your system, they can not get the Aimovig out of your system. Aimovig has a 28day half life, so even at 28 days post injection, I still had 70mg of poison still in my body. I am still sick now, and will probably continue to feel ill until the drug is out of my system for good(maybe 3-4 half lives).
Perhaps I had a rare adverse reaction that got more serious then most bad reactions. But with this reaction, there is the possibility that my immune system will be negatively impacted for LIFE!
Alternately, I have to say that in July, I had at least 12 migraine days, and since I took the injection(40 days ago) I have only had 1 migraine. That is least amount of migraine days, since I was diagnosed in 1974….
So Aimovig Works! But, unfortunately almost killed me…
My neurologist is now hesitant to prescribe the drug to another patient until “there is an antidote”
I hope that no one else has the reaction that I did, which is called “Immunogenicity”
My wish would be for no one else to go through this, and I realize, that if I don’t report this, to the FDA and to other migraine sufferers, you may not be aware of this risk…
I’ve heard of others having mild reactions, but as with any injectable drug that stays in your system like this one, there are going to be cases of adverse reactions and they will vary from slight to severe. Your Neuro is taking it too far by denying his other patients treatment just because 1 patient had an adverse reaction. That would be like if a pediatrician had 1 kid have a bad reaction to the MMR vaccine and decided to stop recommending vaccines for all children as a result. Besides, there’s no such thing as a cure for a situation like this. It would be more like a reversal agent kond of like Narcan, but seeing as how Aimovig works im not sure that this is even possible. And the half life is still 28 days no matter the dosage you took unless you took 70mg at 2 different times days or weeks apart. It seems unethical to me, what your Neuro is doing. The research is there, the risks are known and he’s denying what is the best shot we have seen maybe ever at real relief because of a predictable issue.
I wonder if the problem isn’t more like the doctor doesn’t want to have to deal with all the paperwork involved with getting Aimovig for all the patients asking for it or something like that? Not every doctor is willing to do the extra work for every patient and with so many ppl asking for Aimovig and the paperwork piling up am adverse reaction would be an excellent excuse for not prescribing it and not having to deal with the paperwork/whatever else it takes to get the meds.
Cajun Angel, I really do understand your anxiety. I am sad for you.
I must say here that first we all must try to express ourselves more precisely, online and in person ; and responders less quick to judge and remember compassion.
When I first read your blog, it touched a very sad part of me that is always on that precipitous edge. You are a an informed Migraineur.
The other day; my first night out in many months at dinner, a well meaning guest said,” I used to get migraines”. She then told me of that time when a friend gave her some migraine medication and within 10 minutes she was fine.
I hear this type of story so many times; it really gets to me. With all due respect I said, That is not “Migraine” that was a headache. There are all kinds of headaches. All of them can be terrible and painful. But with intractable migraines as with mine, it takes 4 hours after the first pill to see if it will diminish, then after another 4 hours another pill. By then, I know it will be 8-12 hours of ‘all over’ body illness and head pain.
Then after 31 years of re-runs like this, there is a 75% chance that it will not work at all and I am looking at 3-5 days of misery. I do not describe these days after when I still have neck pain , neuropathy and other symptoms. That is because I get this look of disbelief from them.
Everyone is different, but this fight to get help, relief and understanding is relentless. Keep expressing yourselves, it is inspiring to know that we are not alone.
Your message really struck a note with me.
For so many years, people just assume you have a “headache” when you tell them you have a Migraine. As a long time sufferer as yourself(44yrs for me), back in the 70’s and 80’s. everyone just thought I was being dramatic and over acting. They do not realize how excrutiating the pain can be.
My head would actually feel better if I banged it on the wall.
I have found better ways of dealing with the pain since then….
Unlike you, my medicines seem to be Fast acting, but the only rescue meds That I can take(Fiorinal III or Fiorinal) always make me extremely nauseous, and I have to take Zofran to help with that.
Now, as I am sure you know, these meds do not Stop the Pain(note to your friend who had the “Headache” and was better 10 minutes later). Nothing Does… The medicine just makes the attack more bearable.
I also identified with you on the way you feel right after the attacks.
Especially after a 72 hour attack. All that pain really wears you down!
I always catch my self saying “I feel like a dish rag” on the days immediately following an attack. For most purposes…
Post Attack… I am still good for nothing.
I also identified with the Neck Pain you mentioned(especially at the base of the skull) the sub-occipital muscles?
During my attacks, I use something called a “Thera-Cane”(which allows you to better rub your own neck). I find that, as long as I am rubbing that area of my neck, the pain in my head seems less intense. Sometimes, I will rub my neck for hours during an attack.
Like you, this neck pain seems to persist, even after the migraine attack has run its course.
Ah… The joys of being a Migraineur! Not!
You… We… are not alone…
I’m also wondering why your neuro started you on 140mg when the recommended starting dose is 70mg. I’m in my 3rd month and doing well, thank goodness. I was afraid of an adverse reaction and feel very bad for CajunAngel. Awful experience.
I saw someone say they got dizzy the first night of the first shot. I felt that too. The first 24 hours I felt light headed from time to time. Has not recurred since. My headaches have gone from 15-20 headache days/month to 5-6 days/month. I’m on the 70mg dose.
I’m glad we have a forum to discuss our reactions and results.
I know my neurologist started me on 140 because my migraines were severe, and he wanted to start with the highest dose first. In clinical studies, there were no reported side effects or the side effects were similar with the placebo (I read them because I wanted to know). I am very alarmed by CajunAngel’s reaction. How were they able to determine that it was the Aimovig and not something else other than just the timing of the event? Also, I don’t quite understand what specifically would affect your immune system for life? More information would be great as it could help one of us down the road if a similar thing happens.
Hi Fellow Migraine Sufferers,
My Neurologist started me on 140mg because my migraine attacks were terrible, almost always lasting 72 hours, and quite often with only 1 or two days between attacks.
In response to the post from “Chronically Everything”
My Neurologist is the best I have had in almost 44 years. She will go to any length, (including paperwork), to see that her patients get the help they need. She specializes in treating migraines.
Yes, I did have a severe reaction to the Aimovig, and if you read the rather lengthly insert that comes with the drug itself, it states a warning, that “Immunogenicity” could not be ruled out as a side effect. The reaction I had was definitely from the Aimovig, and the reaction I had was Immunogenicity. This was confirmed by a neurologist, two allergists, and an immunologist, and the labs from my hospital stays.
The nature of Boilogic Medicine creates Antibodies, sometimes these antibodies attack the drug itself and reduce it’s effectiveness, but other times it attacks the body of the person who has taken the drug. Unfortunately, in my case it was the latter.
Aimovig is a new drug, and with any new drug, they don’t know the true implications for side effects until a larger sample of population takes the drug. That’s why I am posting here, and have made an official report to the FDA.
I have read that quite a few people who have taken it, complain of Flu Like symptoms… These are the antibodies negatively affecting the hosts body that are causing those symptoms.
Unfortunately my body is highly intolerant of Biologics, and identifies this type of medicine as a foreign object in my body. I have been informed that if I took it again, the reaction would be even more severe and possibly fatal.
I am sorry if I over simplified that my neurologist was not comfortable prescribing it again right away,(She said “until there is an anecdote”) But,She knows there is no anecdote to this type of medicine. For her, I believe that was a figure of speech. She conveyed that until she has more information, she would not be comfortable prescribing it. She is researching and consulting with the Immunologists now. Even if it would be to exclude using that type of drug for patients who exhibit factors that would pre-dispose them to my reaction.
For instance… I had a botulism like reaction to Botox when she tried that on me for my migraines. It may be that the Botox, which is also a Biologic, that may have primed me for the severe allergic/immunological reaction…
This is new science, and they don’t really know what kinds of adverse events may happen. All the risks are not yet known… Even if my reaction was rare, it was a risk that was actually printed as a warning on the Aimovig drug insert!
I do believe in trying new drugs to alleviate the suffering of migraineurs. I actually participated in the Clinical Trials for Imitrex which is a wonderful drug that has changed many lives for the better, including mine.(unfortunately because of a heart issue, I can no longer take it)
So for some people, including myself, it may have been more prudent to wait for a larger sample of the population to try the drug and see if a trend of bad side effects reveals itself.
That is the only reason that I am posting here is…
If this does happen to someone else… I want them to know they are not alone, and if I can share any knowledge to help alleviate someone’s suffering or give suggestions for treatment options, it would be making the best of a my bad situation. Respectfully I wish everyone here the best…
Good morning CajunAngel. I read your heartfelt message this morning and I have a lot of respect for what you went through. Thank you for sharing.
Thank you so much for your kind words…
It meant a lot to know that another human being had compassion for Me… Someone they don’t even know….
We could use more of you in this world!
I’ve been happy beyond words with Aimovig. Since June 8 I have only had two migraines (and I think one was starting, not sure, the day before I gave myself this month’s dose).
This is staggering, considering that before I was getting 2 to 3 per week!
If only it weren’t so hard to get my insurance company to pay for it. They agreed to pay for three months, absurd as that is. Guess I have to argue with them in November.
Lynn V. – Glad to hear it has been helping your condition. However, can you clarify a few things for everyone’s sake. How many doses have you had and what were the dosage strengths? Did you receive the two “free” doses from Aimovig? Did you receive any “free” doses under the Aimovig “Bridge Program” and if so, how many? Thanks.
Hi everyone. This is my first day here.
I’ve tried so many different headache meds over the years. Imitrex was okay but it didn’t always work. Plus I have an autoimmune condition that gives me Raynaud’s and if you have vascular problems you should not take Imitrex.
So, I’ve been on Topamax and Botox injections for about 3 years. The meds seemed to work at the start but I was still getting headaches. Fioricet was my go-to medicine but I was up to around 3 of those a day towards the end and I was afraid I was giving myself rebound headaches.
Which is all a long way to say that I tried Aimovig for the first time 3 weeks ago. My neurologist told me that he wanted me to take 140 mgs (the two shots) at a time because he said the 70 mgs wasn’t working on a lot of people. I was surprised because I’m just 5’4 and 110 pounds but he said take the two shots so I did.
Honestly, it was like a miracle for me. I had a slight headache the night I took it but I woke up in the morning and no headache. I have not had one headache since then.
I go see my neurologist again next week for my Botox shots and I want to continue with those and maybe stop the Topamax. I have good insurance and my autoimmune disease is so severe they usually cover these outlier meds, so I am hoping they will approve this. (Hopefully not send out a hitman to get me – I have cost them a fortune since I got sick!)
It would be devastating to find something that works like this only to find out you can’t afford it.
Appreciate hearing about all your stories and all the good advice here.
If Aimovig is working for you, I have no idea why you are taking Topamax. Topamax is a really strong drug that has multiple side effects. In my case it actually damaged my kidneys, which took a long time to reverse. As far as I’m concerned, it’s a dangerous drug.
If Aimovig is working that’s all you need.
Im interested in trying that new shot medication! Today is my 1st day here too. Im also autoimmune. I have been taking Bupap for the last year or so. Imitrex and all of thpse triptan drugs make my heart race which is a problem w/Hashimotos. We just completed a 20 hour travel today and I was feeling ok, but now ave officially hit the wall and have started in with a migraine. All the best to you. Thanls for the info on that new med! Take care!
Dear Adie, thank you for responding. Sometimes I feel unheard, even here. I have Hasimottos and did not want to try Botox because of so many allergies to medications. I did try the Cefaly device but after 3 months it made my (M) more severe and more frequent. This is a huge lesson to everyone that all people are not created the same.
I just lost my ride to my newest Neurologist. I must ensure that I have a person to go with me in case I have a headache or one the night before; my vision and balance is greatly affected. And the possibility of getting a trial shot even that I have my doubts the new Doctor will believe me and go that fast. If I reschedule it can be another 2 months.
I live 30-40 minutes and miles from a good choice of Doctors.
How did you get approved for Aimovig, Dr. approved?
Or insurance? Let us know.
Ellen, it is so hard to have to depend on others for rides etc. I hope so ething works out for you.
Re: Aimovig, my doctor and I both filled put paperwork about 6 weeks ago for the free 2 month trial. They called to set up delivery, but I have to wait as I will be away for several weeks and unable to follow the 30 day injection protocol. Actually, I will be out of the country and not comfortable trying a new med shortly before leaving.
My insurance which is Tricare amazingly has approved me for four months…after which they will re-evaluate. Both my doctor and I submitted paperwork to them.
I am more worried about the Aimovig than I was about the Botox. perhaps because I was younger when starting Botox, and my first injections were only 10 units…..by a dermatologist my sister, an RN, had worked for. Those ten units actually helped! Also, Aimovig had few seniors in their trials and no participants with any cardiac issues.
Later I received 100 units from my favorite neurologist and it helped as well…not earthshaking, but some improvement.
My next two neurologists increased the dose…now at 245 units, but little relief.
I am really tired 😳 The older I get, the harder it is to deal with the pain, and the endless fatigue and lack of interest in
doing anything. Pain takes such a toll.
My best years were in the 80’s n 90’s when my PCP prescribed Fiorinol #3. Usually one would knock out an early morning headache and I was good for the rest of the day. I had maybe 10 to 15 migraines a month. Most responded well to one or two capsules. I never developed tolerance or any dependence. I had almost a normal life, full of activity and the joy of raising our son. That lasted 20 years.
When thyroid meds sent my migraines soaring, I saw a neurologist who discontinued the F#3 and gave me plain Fioricet and Inderal. I did well for a couple of years, but then the headaches returned. We tried other things that didn’t help and I can’t take triptans cause of a congenital heart defect. So the past 20 years have been really difficult.
I even tried two sinus surgeries, but they only helped a bit for two months. I live in a hot, humid, rainy climate.
So sorry for the rant, but this seems like a safe place to rant about migraine 😉
I will let you know if Aimovig works for me. Perhaps you can qualify for the two month free trial. I am so sorry for your suffering. No one truly understands but those who have been there.
Someone asked me about my Aimovig use. I got the two free doses from Aimovig. I could not get on the bridge program because I had to prove that my insurance company absolutely would not pay for it This took a long time and I was nearly at the point where I needed a new dose–and who was going to pay for it? Finally an urgent appeal to my insurance company went through and they agree to pay for it for three months. Three months! So in November we are going to have to fight with them again. Meanwhile, I still can’t get on Aimovig’s $5 co-pay program either.
All this is extremely frustrating and I plan to talk to my doctor about this next week.
Lynn V. – We all feel your frustration to get the med and have it covered. However, I dont understand why you werent covered under the bridge program. Although I’m not there yet (my 140mg second dose is to be delivered today), I understood from others here and Aimovig reps I spoke with that it is Aimovig that pursue’s the insurance and appeals. Further, I thought the whole purpose of the bridge program is to continue supplying you with the med while appeals are exhausted or until insurance picks up.
That’s not what they told me. They didn’t lift a finger to do any appeals. It was all left up to me and my doctor’s office. They said I could only be in the bridge program if I had absolute proof that my insurance company wouldn’t pay.
I’ve also never once heard from my case manager.
I’ve had a really hard time with the whole Aimovig process (including one delivery they promised that never happen. We had to reschedule.)
I am really frustrated with Aimovig and the wait times (45 minutes once!) that I have to put up with to talk to anybody.
Also the Bridge program only lasts a year. If they still can’t find an insurance company that will pick it up, you are stuck paying the whole bill.
Lynn, do you mean stuck paying the “whole bill” for the 12 doses you received under the Bridge program if your insurance never decides to cover Aimovig, or paying for future doses going forward? Do they go back and charge you for what you got, or you’re just on your own at that point?
No, I meant that you’d be charged for all the doses going forward. The Bridge program is supposed to be free. But it sounds like they make it so hard to get onto that I’m not sure many people are on it.
If there is anyone on the Bridge of $5 co-pay program, I’d like to hear about it.
Another thing: United Health Care is my insurance and they said I’d have to go through a specialty pharmacy, but didn’t say what that was. When I called, I was told it was BriovaRx. After spending a week on back-and-forth calls with Briova, I finally found out they were the wrong pharmacy and to contact UHC’s regular pharmacy, OptumRx. They said they wouldn’t be able to ship it by the time for my Sept. dose, so I had to go through a local pharmacy and bill them. Then I got a shipment from Optum with three doses, paid for by UHC. I’ve had so many of these wrong instructions that I really think I’m going nuts. Anyone on United Health Care, don’t make the same mistake and waste time on BriovaRx.
Not sure if you read some of my other posts discussing the outrageous wait times experienced and my complaints to them regarding unacceptable delays, which many others have echoed.
Well, maybe others can comment about how the bridge program operated for them, because as stated, I’m not quite there yet, but sounds like I have lots of battles ahead, especially if they are not doing the legwork on appeals. In fact, because of what you said, I am going to proactively address with them to try and assure (ha ha) that there is no lapse in treatment and try and pin down how the bridge program will operate and if they have made any headway with my insurance.
You are very smart to do this. If I had been forewarned, I’d have done the same thing.
Adkraus, I was one of the people who mentioned that Aimovig was going to handle the insurance appeals because that’s what I was told that my caseworker in the beginning. When it came time to switch to the bridge program I was told that I was in charge of filing all the paperwork for the appeal. Imagine my surprise. Now, nothing Surprises me anymore about this company. Keep in mind that switching from the free trials to the bridge program is also the time some of us had the most difficulty getting the injection in time so you might want to be proactive about that as well. Good luck!
What disappoints me is that you get a different story every time you talk to someone. The case workers say, “Oh no, we take care of everything.” Looks like that isn’t the case. McKessen has no idea what Aimovig Ally is doing and vice versa, and yet they try to explain the others’ policies.
At least you heard from a caseworker. Mine has never contacted me and is never available.
McKesson was just plain rude to me.
Oh, “my” caseworker (if I even have one) has never contacted me. This is when I call in and sit on hold for 45+ minutes each time. (Which has happened at least 12 times now if you add up calls to Aimovig Ally and McKessen.) My policy now is just to call every few days until someone gets the shipment in the mail. Which is probably obnoxious, but they are training me that this is the only way to get any results.
Hopefully eventually they will increase supply, or improve distribution to meet demand (or the other CGRP drugs will become available and even things out) and this will become less of an issue.
Gardens,,, – My feelings exactly – – and feelings I have expressed to them over and over. Never heard or can reach my case worker, and nobody has EVER called me back (Amgen or Pharma). The latest: I was supposed to get my second dose delivered to my office yesterday (upped to 140mg). This was after hours of phone calls and after no one called me to set up delivery. (I am now a week over a month since first dose). Busy day yesterday and I realized at 5pm no delivery. Thirty minute wait on phone to Pharma (surprisingly short – ha) and they tell me due to delays (by them), it will arrive this Monday. Of course they didnt call to alert me. I told them they will need to change delivery location to home b/c my son having surgery Monday and I will not be in the office. She said someone will call me today to confirm delivery. Guess what – – 6pm ET here and no call! Need I go on.
Kblange – I wasn’t aware you also had to handle the appeal. Can you remind us how that played out or is playing out and if you are in the bridge program now, when they agreed to provide your third dose? I guess given we all see that they cant even manage to get you the doses on time and make us wait hours on end to speak with someone, its no surprise they are not doing leg work on the appeal. Is there anyone here who has had Aimovig pursue the appeal? Perhaps your case manager did say they would pursue the appeal (and I recall a rep telling me that as well), but then realized they are wholly understaffed and ill-equipped to do so.
adkrauss, sadly, I’m not surprised by anything you’ve written about your experience with both Aimovig Ally and the pharmacy. Let’s face it; they both lie to us over and over again. At least they sure have with me. I was told by my “caseworker “ way back in August that not only was she going to deal with my insurance company, but she already filed the appeal. Boy, was I impressed! Then came time to switch to the bridge program. I’d heard horror stories of people waiting three or more weeks to get their shipments at this stage so I called two weeks prior to my third injection date. My caseworker was never available and never called me back. After a few days of trying to connect with her I gave up and spoke to a different caseworker who lied and said my dr never faxed the updated form for higher dose. I knew he was lying because then nurse got a confirmation that they received the fax and they pulled this same game when I started. All these shenanigans took almost a week. I finally asked to speak to a supervisor and lucked out with a fantastic one named Joanna. She found the fax and sent it to the escalation department. Told me I would hear from the pharmacy in a day or two to schedule my delivery. Of course I didn’t. Now it’s Monday and I’m due for injection on Friday. Called Ally back but Joanna had left for the day. They told me to call the pharmacy. On hold for at least 45 minutes only to find out they would call me the next Monday to tell me where my script was in their “que.” and basically admitted it wouldn’t arrive for at least three weeks which was unacceptable. Then I remembered that wonderful caseworker who filed my appeal two months earlier so I called my insurance company to check the status. They had no idea what I was talking about. That’s when I found out my lovely caseworker had lied. So I called Ally and was told “oh no, it’s your responsibility to file the appeal with your insurance company. You must have misunderstood.” I hate this program! Sorry this was so long but I guess I needed to vent. Hope I answered your question!
Adkrauss, I got my second dose (late and delivered to the wrong location…. I would have someone there at your work location looking out for it just in case. When I complained about it going to the wrong address, they said the problem was the person who had originally set up the delivery, and that despite the 3 calls I had placed in the week between then, my address was never set as the right one). I am currently calling every few days working on transitioning to the bridge program. One person told me I would be kicked out of the Bridge program if my doctor didn’t submit paperwork to my insurance. The next person told me they would do the work pestering my doctor. At this point, the only thing I trust is what smells true: that they are so overwhelmed and understaffed to keep up with demand and medication dispensing schedule, which is causing so many phone calls, they cannot provide good customer service, only polite lies meant to get you off the phone.
So I had my second dose (upped to 140mg) about 10 days ago, which of course arrived a week late. By way of recap, no relief from first dose and even had some of the worst days ever which did not respond to imitrex, until I took like two injections and a tab. And still woken next morning with raging migraine. Fast forward, had a relatively decent week since dose two, BUT had an occipital nerve block and trigger point injections the day before taking second Aimovig. I usually get up to a week relief from the nerve block and it seems that was the case again, since day 8 after block migraines returned in full force.
In a bit of good news, I learned a few days ago that my insurance (Empire Plan – NYSHIP) had approved the Aimovig back on August 30, but of course nobody advised me. I called to get the ball rolling on insurance and any appeals, since hearing on this forum that Amgen was requiring patients to pursue insurance/appeals. On that, I was clearly advised a few days ago that Amgen will pursue insurance/appeals and it is not the patients responsibility. And, as noted, my insurer approved. It is a $25.00 co-pay for me per shot, but Amgen co-pay program will pick up $20.00 of the $25.00!! I can now call my neuro to write a script to my local CVS like any other prescription and do away with the exhausting stress of trying to get the Aimovig crew on the phone and worry if my shipment will arrive. To be continued… and happy Friday!
Okay, just this minute got off the phone with my neurologist’s office. The office manager said that Anthem Blue Cross (which I have) will probably allow Aimovig but may not allow Botox at the same time. That’s fine with me, even though she’ll check to see if I can get both.
She said they do not have to go through the Speciality Pharmacy for Aimovig, which most people are doing, because it’s a self-injectable so she’s can go through my private insurance.
Hope this makes sense. I see them on Tuesday and he’ll give me the prescription for Aimovig. (My second free dose arrives on Tuesday.) She said they send the prescription in to my insurance who send it back to them and then they respond and it should be okay’d. She’s said it’s worked for other patients with my insurance so finger’s crossed.
I’ll update with any new information.
Lynn, thank for the advice about Topamax. I am only taking 50mg and since I am seeing my neurologist in a few days for the Botox shots, I’ll wait to get his okay and advice about how to taper off the Topamax.
Just took my second auto-injector of Amovig (140 mg) this past Monday. It’s working amazingly well for me. The first month I had only two migraines where I typically have over twenty a month. One migraine was due to Albuterol and I should have paid more attention (I was in the hospital getting a breathing treatment and I should have asked) and one was due to the barometric pressure dropping – it had been cloudy and rainy here for almost a week straight. Still amazing. I have a nurse care manager at my insurance company due to my being a complex case (because I have multiple medical conditions) and she is trying to get the Amovig approved for me. I don’t know what I’m going to do if it falls through. I can’t use triptans any more because I had a stroke.
Second CGRP med approved by FDA to be available in weeks:
The second new generation of CGRP antibody has been approved. It’s called Ajovy was just approved by the FDA on September 14th.
It now joins Aimovig which was the first CGRP antibody to be approved.
Ajovy will be available within USA pharmacies within two weeks with a prescription.
It is available to patients as either a quarterly (675 mg) or monthly (225mg) prefilled syringe dose that can be administered at home or at a doctor’s office.
Some insured patients may be able to pay as little as $0 on prescription until their offer expires.
So, I’m having the same “right hand not knowing what the left hand is doing” experience with Speciality Pharmacy and Aimovig Ally.
As I posted earlier, got my first dosage (140 mg) on Aug. 24 and took the two shots right away. I had a headache that night but have not needed any pain meds since then. Remarkable. I can’t remember the last time I’ve been headache-free this long. All of which which makes dealing with getting this stuff more than a little frustrating.
I called them last Friday to find out about my second dose arriving since I need to take it on the 24th of Sept. I waited on the phone for 30 minutes but got ahold of someone who told me I would have it delivered in just a few days, on the upcoming Tuesday. Great, right?
I then came home – the very next day – on Saturday to a message on my phone saying that since they couldn’t get ahold of me, (??) they would mail out my Aimovig to arrive “sometimes between Wednesday and Friday.”
Sooo, I called them – another long wait – and this person said it would arrive on Thursday,
So guess what the Easter Bunny dropped off on Tuesday – the Aimovig. I mean I was glad to have it but it’s really crazy that they can’t coordinate this stuff better.
I saw the neurologist yesterday who told me that since the Aimovig is working so well, to stop the Botox for now but if I get another headache, to just call him on his personal line and he would come in at lunch to give me the shots.
Last part of the rant, I got a call from CVS saying that they had approval from my insurance for the Aimovig, but it was pretty high. I have a cap of $50 so I was surprised.
I called them back and they said I have to pay $278 (I think that was the amount) every month. I was surprised but they said Blue Cross’s med caps changed after the Affordable Care Act.
So, I’m going to call and see if I can get that amount lowered. I am a lawyer and I am fortunate enough that I can afford this – but I know a lot of people can’t and that matters.
My neurologist told me that the new drug awaiting to be approved soon( is an infusion and you just have it once every 6 months. I hope they lower the price on that and/or Aimovig gets some competition and lowers their price.
A question for the group – when I was speaking to CVS, they said they would send out to get the Aimovig. I told them I don’t need it till the 24th of October so I don’t want them ordering it yet. The woman at CVS said to call them in 2 weeks or when I was ready and they’d order it.
So the question is – has anyone picked up their Aimovig at their own pharmacy? And if so, how long did it take your pharmacy to actually have it in hand.
Wow, I just wrote a novella.
Carolelynn – I posted a message earlier today about a new. CGRP med that was just approved. It can be administered monthly or quarterly, but the quarterly is like $1,700. Here is another article:
Thank you – I just bookmarked that. My neurologist talked about Aimovig-like meds coming out when I was there last week. I told him I don’t mind the Aimovig injections but he said he will probably recommend the new one that only requires an infusion every 6 months.
How great is it that once we have all these choices, the hassle of trying to get these meds should be easier.
Yes, Walgreens… 24hours!!!
I ended up having a 3 month supply (6 injectors) sent to me from Caremark, my mail order pharmacy through Anthem Blue Cross. By having the neurologist order a 3 month prescription with 3 refills I save a lot.
I originally had a order for one month but when the local CVS said it was $270 something I was surprised. So when I asked how it would work if I got a 3 month supply they said it would be $50 total for the 3 month supply and I could have it sent to me by mail order so no waiting in line.
The Aimovig arrived today.
Btw, the Aimovig people told me that the injectors are fine for three months as long as they’re refrigerated.
I am posting this for ‘Canjunangel’.
How are you doing since diagnosis with Immunogenicity?
I am very concerned about this because I can not find any treatment for this condition. I understand the process, but the waters are uncharted on this condition.
I think this is why I was denied participation in so many trials locally, because of my 2 autoimmune diseases, and my age. After following this for 5 years, the anxiety of seeing my latest Neurologist is unpleasantly high. He may just say, forget it or he may say take the risk here is your first shot.
At this stage in my life where everything is dictated by ‘will I have a (M)’ on that day or the day before is exhausting. And no one, I mean ‘no one’ except ‘you all’, here on this website understand this. When I express my concerns all friends and family who have not been with me during these daily episodes do no t hear me. They just say, oh great something new to try. I understand that they have insecurities and fear. Sorry, I am venting too much here. Hope that you are feeling better and have had help and support from those around you.
Bonjour Cher Ellensr… Most of my terrible symptoms have eased up, but 60 days post injection of Aimovig, I am still ill.
Besides fatigue and flu like aches, I have a hive like rash that continues to surface since my injection. Tomorrow I will have to go to have a skin “Plug” taken to try to identifty the toxin or type of antibodies, my body continues to make to try to destroy the Aimovig.
At 60 days, because of it’s long half life, I still have 1/4 of the Aimovig poison in me.
They are still not sure about the long term effects on my immune system. There were tests that could have been done when I was in the hospital that would have helped the Immunologist diagnose exactly what type of reaction was occurring. If specific antibodies proliferated, IgG and IgE being the ones that cause the most damage, I believe the test would have indicated that. Unfortunately, the hospital did not know how to diagnose or treat this reaction, This is a new type of drug, and this is new science.
You were right about the Immunogenicity… Once your bodies release those antibodies, and once damage is done, I believe that it is irreversible. That’s why I think that Aimovig should disclose the possibility of this reaction more openly…(not buried in small print on the insert that would take more than an hour to read), and who knows what immunogenicity means anyway… How about plain English! I think this drug should have a Black Box Warning.
From my research, it appears that if you have had ANY biologic medicine before, you are more likely to have the reaction I did. Also, if you do have immune system issues, this drug perhaps should be contraindicated… Who knows? More people will get sick, as more and more people try more of these types of medicine.
But again, I do have to disclose, that this medicine really does work for migraine prevention… In 60 days, I have still had only one migraine, and I usually have about 16 per month.
That’s what’s so disappointing for me, I can not trade my health or life, just to prevent migraines.
I believe that they will discover ways to make the biologic medicines safer, where this type of response will be rarer. I have read that even minor impurities in the drug, or any mishandling while shipping could cause the proteins to aggregate and cause this effect on the patient. There is too much margin for error, and the medicine is too sensitive.
Had I known the true risk… I would not have taken it…
Better to wait, until they work out the problems…
But that’s just my opinion… I am curious if anyone else has had the reaction I had since Aimovig was released in May.
Thank you Cajun Angel,
I hope that all of us using this website to express our hopes, fears and progress; will learn to be more specific in order to help the others know exactly what we have done and are actively doing to go forward to help ourselves. You have!
To all Migraineures:
I have decided not to use the Aimovig that I received. By the time I can see my new Neurologist, it will have expired. It has a 7 day expiration on the box.
So far this week I have had one (M) start on Sunday and even though it did not progress after taking one Amerge Generic 2.5 mg., into a day in bed, it starts all over again, every day. Then I move up to Brand name Amerge and must take two. I may have one and a half days after that, but it starts all over again. So a preventative is the only thing that looks promising. I just do not know if it is the cards for me.
Living with this malady is far worse than most people understand. The only thing I use my calendars for is; to mark the days of the week I am out of commission or in pain. I do not take pain medication, it only made my vertigo and stomach issues worse.
I am having terrible side effects since my first shot a few days ago. Dizzyness, nausea, Insomia, and worst of all the worst migraines of my life everyday. That are not responding to my meds. Aimovig website only mentions constipation. There are reviews on drugs.com where a lot of people are having a terrible time with this. I wish I knew how to get it out of my system faster. I was reading the CGRP plays a role in protecting the heart, melotonin, pituitary gland, metabolism etc. I read an article from a physician that stated blocking this receptor needs to be studied more.
I can’t wait for this to wear off. If they had posted all these possible side effects I would not have taken this drug.
Here is are recent reviews of people who have used this
Eastcoasta, for the life of me I can’t find your last message where you asked me if I’m still on the Aimovig so I’m replying here which is going to make no sense to anyone reading this. Sorry!
After much thought, I did a fifth injection yesterday. Here’s why: first three months had 2 migraine-free days but my triptans were still working somewhat. Last month I had 11 migraine-free days in a row than 17 days of hell because my triptans stopped working at all. I decided to try one more round to see if there’s improvement in the number of migraine-free days and to talk to my migraine neurologist about non triptan rescue meds. I really don’t want to switch to another CGRP after hearing your story (and cajunangel’s). I have lupus and a compromised immune system. I doubt I would have tried the Aimovig if I knew your stories. But everything I read said “little or no side effects” and I naively believed it. Lesson learned. Take care.
I had to search for reply as well. Responses are all over the place here. Thanks for your reply. I hope you have great success with your last shot. I’m just praying my meds will work again. Take care.
So, got approved for aimovig. Had a Trigeminal Nerve Block shot a couple of weeks ago with zippo affect. Will give myself the shot today or tomorrow and see what’s what. Am kinda hopeful but after a zillion procedures and meds and still nothing touches this 6 year 24/7 headache its a bit tough to be too positive.
20 years migraine sufferer here, mainly accredited to hormones and stress. I have tried everything from Botox to acupuncture and pretty much every preventative medication with zero relief. I have relied on imitrex to help me function, but the more I take it the more headaches I get. There’s usually a great week in the month where it doesn’t matter what I eat or drink I don’t get one! It’s the best! Yesterday my husband injected Aimovig in my leg. My neurologist signed me up for a free two month trial. I am very hopeful and have faith that one of these days God will lead me to the cure. I’m hoping this is it!
I’m 52 and my migraines started in my teens. Had them monthly until perimenopause when they increased. I had my first dose of Aimovig two weeks ago and have not had a migraine since! No side effects other than slight constipation. Background: For the past 18 months I have had 2-4 migraines per week. Maxalt has worked, but loses effectiveness with frequency. I was on Propranolol for 3 months – it helped a bit but I could barely motivate to get out of bed. I then tried Trokendi XR. Once I got to 100mg I began to feel really sick and depressed. I could barely eat and it didn’t help much with migraines.
I am very excited about Aimovig. So far, Anthem Blue Shield is denying but I plan to appeal. I read that if your neurologist is Board Certified with United Council for Neurologic Subspecialties, that can make a difference, as long as you have tried, and been unsuccessful with a few other medications.
I had it done in July. The pain unbearable. I can’t do this every four weeks forever. This isn’t the drug for me.
Migrainenyc – What is the pain you are referring to? Are you speaking of the pain from the injection itself, your migraines or side-effects from the Aimovig?
Sorry I realized after I posted that I wasn’t clear. It was the pain from the injection. I got the 140 dose and it hurt like hell. It was fine going in, once it was all the way in the pain was unbearable. And I had 2 injections, after the first I can’t believe I let her do it to my other leg. Both hurt just as bad. When I went back for my Botox appointment my doctor suggested maybe they hadn’t kept it out of the refrigerator long enough? I don’t know but I don’t think I want to try again. She’s gonna have me try Ajoy, she said that has a different injection system.
MigraineNYC – I am surprised to hear the injection itself was so painful. It is the same spring loaded system used on my imitrex from Sun Pharma and I find it to be the least painful out there. (Indeed, I stopped using another imitrex injection because of the injection pain, due largely to the fact that you had to press so hard to simply release the safety lock.) As far as it being too cold, that could be the issue, as I take insulin and have made the mistake of injecting while cold and thought I was stung by a bee.
I’m 30 days out from 70mg dose of Aimovig. No side effects and I’ve gone from 8 migraines a month to NONE. None of my usual triggers started me off. The only big one left to test is the dreaded menstrual migraine. I’m 52 and with peri menopause the menstrual migraines have gotten longer and stronger as things become less predictable. They usually take an ER infusion to break them. My next dose is scheduled to arrive Friday.
I’m feeling *very* lucky. I haven’t had long waits on the phone with Aimovig and my general physician seems to have navigated the application for the free sample Ally program first try. Today I was on the phone with Anthem a looong time but (for once) good results. Anthem (at least in Ohio) updated their drug list as of October 1st and while one page has Aimovig still listed as nonformulary, I can now find it on their mail order pharmacy Expresscripts “price a medicine section” as a Tier 3 covered med at the 70mg dose. I called to confirm and my doctor or Aimovig had already gotten a prior authorization in place. It did look like you’d have to struggle to get the 140mg dose though.
I’m delighted to read in this thread that often the effect builds as you add doses and that there are other drugs if Aimovig doesn’t live up to its initial promise. I mean thank goodness for Imitrex shots but I would sure love not to constantly have one within reach!
Anyone know anything about menstrual migraine and Aimovig?
Hi all! This is for anyone losing hope because they’re not getting relief from Aimovig yet… I have daily severe intractable migraines. My first two injections were 70mg. While the severity of my migraines decreased, I never had even one migraine-free day. So for my third injection we bumped up to 140mg. No change. I was ready to throw in the towel but my doctor urged me to give it one more try. And boy am I glad he did! Had the injection last Friday and have been migraine-free ever since, which is nothing short of a miracle. I wish all my fellow migrainers similiar success.
@kblange THANK YOU for posting your experience and wishing you the best, so happy for you! I myself have had NDPH/ chronic intractable migraine for 5.5 years. Also similarly to you I had 2 of the 70mg injections as part of the trial, and just had my third dose 4 days ago which was the first time had 140mg. Still zero benefit. Your post gives me hope that if this doesn’t work, the next might, or a different anti-CGRP med might work.
Can you please give me more info- how long you’ve had an intractable headache? Did you have any positive or negative symptoms from the first three doses? When did you finally see improvement after the 4th dose? THANKS again!
Hi migrainedeath, I’m glad my post gave you hope! Reading all the success stories when I was getting 0 result really bummed me out so I wanted to show that slow and steady can still win the race. I woke up two years ago with a severe migraine that basically never went away. Tried all the usual treatments (Botox, nerve blocks etc) but no luck. Thought Aimovig would be my savior but as I wrote, first three months weren’t much of a success. I did get a pretty lousy side effect that others have mentioned; much harder to break my migraines since starting the drug. I took the fourth injection on a Friday, had a wicked migraine on Saturday. Then100% 0 migraines for 11 days!!! That’s amazing for me. In the first 12 weeks I only had 2 migraine-free days. Unfortunately, I did get what I hope is just a breakthrough migraine today. I’m terrified my migraines are back for good but I’m sure it’s the humidity. It just seems too good to be true. I hope I answered all your questions. If not or you have more ask away! ( I think you sent something to my inbox but for the life of me I can’t find my inbox anywhere. Sorry) Be well
migrainedeath (great name), I am also chronic intractable. Mine usually last at least 2 weeks, but recently have gone on for a month, some longer. All summer I was like migraine for 2 weeks, 3 days off, migraine for 20 days, 3 days off, migraine for a month, 2 days off. Fun times. 🙁
My doctor started me on 140 because she didn’t think 70 would do anything on me. The first two weeks, no change. In fact, I got a migraine and was totally discouraged, even though it wasn’t as completely knife stabbing acid-burning terrible as usual. And only lasted like 6 days, which was a total improvement. After about two weeks, I felt better. By the end of that first month, I could tell I was doing better. One thing my neuro reminds me of when I’m in a totally bad pattern (which is like, often), is that whatever my brain did the week before affects what happens the next week. So if a migraine beat the crap out of it, it’s not going to go to happy overnight. But by the end of that first month when it was time for shot #2, things were definitely improving. Still have headaches daily. But the pain level and incapacitation has totally improved.
I’ve only had one month of injections but if things continue going the same way this will change my life. It took about 5-6 days for my everyday migraine to subside after the first dose, but after that only 1-2 days required a triptan. I’m 50 years old and have suffered for a good 40 of those. This drug seems to be a miracle. Now getting it is not easy but you CAN get it. You need a neurologist headache specialist preferably to prescribe it. They can get you started with the two month free trial. (Getting the second dose has been dang near impossible- there must be a shortage). Go to the Aimovig website and sign up for the copay card. Find a pharmacy that can order it and even if your insurance doesn’t offer any hope of coverage (mine does not) use the “bridge to insurance” option to get 12 months free. It is a bear to get it but so worth it!!!
Hi everyone, this is just my second post here.
I tried Aimovig 2 months ago. I have had migraines for years and was taking Topamax and Botox shots under the migraine protocol. I couldn’t take Imitrex because I have autoimmune problems. (If you have vascular problems Imitrex is a no-no.) The Botox and Topamax were helping, but I still got headaches. So I was taking a Fioricet (or two) every day.
The Aimovig turned out to be the miracle drug for me. My neurologist told me to take 140mg because he said the 70mg wasn’t working for a lot of patients. So I got the free Aimovig delivered here (and yes, there’s so many problems with getting ahold of the right people at Aimovig or the Speciality Pharmacy – as others have discussed.)
I did the injections (they didn’t hurt but then again shots don’t bother me.) By the next morning I was headache free and that lasted a full month – not one headache. I was so happy because I was afraid I may have had rebound headaches from the Fioricet.
Long story already not short, my neurologist had me stop the Botox and the Topamax, and I did – it turns out the second Aimovig injection still worked great but I wasn’t completely headache free. So I got the Botox and a week later after it kicked in I’m good. If I do get another headache he said he might start me on Topamax again.
So what I really wanted is to give some advice:
1) If you have an insurance that has a mail-order such as Caremark with Anthem Blue Cross, then you should have your neurologist order a 3 month supply (so 6 injectors if it’s 140mg.) . I pay only $50 for the full 3 month prescription. IF YOU ONLY GET IT FILLED MONTHLY, you’ll pay so much more. – then it’s over $270 a month. Quite a difference, huh? And don’t worry about the Aimovig not lasting – the people at Aimovig there told me it’s fine as long as I keep it in the refrigerator for the 3 months.
(Added plus, you don’t have to talk to the Aimovig people anymore. I got my 3 month supply today.)
2) If you have an autoimmune problem – and I have Scleroderma/Crest, then talk to your rheumatologist. My specialist at UCLA said this would be fine so big relief.
I am always concerned starting new drugs but this really has been amazing for me. Zero side effects and I’m the queen of side effects so big thumb’s up from me.
Carolelynn – Glad to hear the Aimovig is providing some relief. For other here (as well as the Pharma’s and even FDA who may be monitoring), can you tell us how many migraine days a month you were having going into the Aimovig dose?
I also want to add that Amgen has a co-pay program that is paying $20 of the $25 it now costs me for dose three forward, as my insurance is covering the med.
I’ve been on Topamax and getting the Botox protocol for a few years now, but I was still getting around 5 headaches or more a week by the time I started the Aimovig. I had been adding on more and more Fioricet so I was worried I was adding rebound headaches to boot.
The day after my first dose of 140 mg (two injections) I had no headache at all. I couldn’t believe it. Didn’t even have to take a tylenol for the whole month.
I had always wondered if the headaches I was getting were had tension headaches as well as migraines but regardless, they were gone.
I did start the Botox again after having stopped them after that first headache-free month because I was starting to just feel a headache coming on. It was so glorious have zero headaches that I started the Botox again per my neurogists recommendation. I am off of the Topamax.
Carolelynn – thanks for the further detail.
I’ve been on Aimovig for three months and haven’t had a migraine since starting! I’m no longer getting my Botox either. I have had some headaches, but they go away with just Advil! Prior to starting Aimovig, even with the Botox, I would get a debilitating two-day migraine every single month. I highly recommend trying it!
Getting my 3rd round of injections (140ml each time). Aimovig is a godsend. It’s time for my dose today and I’ve had a migraine yesterday and today – but before that only 3 migraines all month!!!!! I’m attributing the migraines yesterday and today to the dosage wearing off. I had migraines at the start of my dose and now at the end of my dose and NONE in the middle. That is crazy good for me!!! I’ve had zero side effects – other than less migraines. It actually would be pretty hard to get side effects due to the role of CGRP – which essentially communicates to the brain that you’re in pain. That’s why there were very few side effects indicated from the studies done. If this drug doesn’t work for you, take heart. There are more preventatives coming out soon! I have my life back and am so excited!
Anne – I am so happy that you are getting such great migraine relief from the Aimovig. I am due for my third dose next week, which will be 140mg. (Took 70mg and 140mg doses previously.)
However, as you may have read, a great deal of people (myself included) have reported apparent side effects – – most commonly, extreme lethargy, dizziness, muscle aches and inhibition of their regular abortive migraine meds effectiveness. Unfortunately, I have not yet seen a reduction in frequency or severity of my migraines (25-30 per month) and am experiencing all of the above ailments which I believe are related to the Aimovig. Thus, I go into my third dose with great trepidation.
You make the statement that it would be hard to get side effects due to CGRP’s role in pain transmission. However, my minimal research indicates that CGRP plays a role in numerous other bodily functions and much is unknown at present. Here is a link to an extensive scientific report prepared in 2014 discussing CGRP – -recognizing that much is still to be learned. I refer you to Figure 6 which shows in simpler fashion the human body and each bodily function CGRP is believed to play a role.
As stated, this is jut one report from four years ago I located from some quick searches. I urge everyone, myself included, to continue to read up on the latest research. Be well.
adkrauss – The side effects you mentions are very common placebo side effects. I read a ton about it before I started taking it, because I wanted to make sure the side effects wouldn’t be worse than the treatment. Correlation is not necessarily causation. “But sometimes the effect goes the other way, and the placebo seems to cause unpleasant symptoms. These may include headaches, nervousness, nausea, or constipation, to name a few of the possible “side effects.” The unpleasant effects that happen after getting a placebo are sometimes called the nocebo effect.
Together, these 2 types of outcomes are sometimes called expectation effects.” https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/placebo-effect.html
Of course this treatment will not be effective for everyone, but my hope is that people are not scared off from trying it by symptoms that may not be a byproduct of the drug but rather something else that is being attributed to the drug.
Anne, thanks for the reply, but as MANY people have noted, these “apparent” (that is the word I have used for now) side-effects were not mentioned in the literature as being experienced by trial group members – whether they were receiving placebo OR the actual Aimovig. I think that is the most important point. And these are not minor issues. That being said, I will keep my fingers crossed and take my third dose (140mg) next week and report back. Right now its back to daily migraine, often with a need to take abortive imitrex in the morning and evening – – which rarely ever happened before the Aimovig.
Does anyone know how long you need to be off Aimovig before you can switch to another CPRG? I can’t decide if I should give up on Aimovig and switch to another CGRP. I’ve been onAimovig for four months and only had 13 migraine free days, 11 of them right after my 4th injection but then my migraines came back with a vengeance. After reading up on Emgality I really want to switch. But the Aimovig has definitely cut down on the severity of my pain so Im afraid to leave the Bridge program and lose out on the free injections only to find the Emagility is even worse. I’m meeting with my migraine neurologist on Monday to decide what to do next. Anyone is a similar situation?
KBlange – Unfortunately, I dont think you will get any definitive answer, but please share with us what you learn. Obviously, given the “half-life” is 28 days, you can figure out how long before supposedly out of your system. As mentioned in an earlier post today, I am due for my third dose next week and may be in your situation shortly. My neuro said that if he knew these other drugs were going to get approved so quickly, he would have told me to not start the Aimovig, because, as previously mentioned, he believes some of the others have a better shot for me with intractable migraine. However, he said I should try and give the Aimovig 6 months, unless side effects are severe. I note that the Emgality promotional literature touts its effectiveness for people that did not get a benefit from Botox, which is me.
Adkrauss, re: Botox and me! Though I would imagine that’s true for most of us trying these CGRPs, don’t you think? I’m willing to do one more injection because after my 4th I went 11 days migraine-free. Up until that 4th dose i had only 2 of those in 3 months but we didn’t bump up to the higher dose until the 3rd month so I’m hoping I just need more in my system. But of course I’ll have to see what my migraine neurologist thinks on Monday. How long have you been on 140 mags?
KBlange – First dose 70mg and second 140mg. As mentioned, third dose next week will be 140mg.
Wow adkrauss, feels like we’re living parallel lives almost! My next injection is next Friday. If I don’t get at least the same results as this month than I’m going to push to change. Luckily, my migraine neurologist treats me as an equal partner in our search to find something to give me some relief. I hope yours does too. And I hope your third injection does the trick. Are you at least getting less severe pain or shorter duration? I’ve gotten both which is why I don’t want to have to go off Aimovig for long before starting a new CGRP. Plus I’m afraid I’ll get off the Bridge program only to find Aimovig works better than the Emgality. It’s so hard to make these decisions when you’re head is pounding! Hopefully, my doctor can give me more direction. Be well
Not sure if this has been mentioned/discussed but note that the Emgality initial “loading dosage” is 240 mg with 120 mg suggested thereafter.
KBlange – well unfortunately for me, it seems our paths depart as far as any relief from the Aimovig. No relief yet and several apparent side effects that have me worried.I hear you regarding having to make such decisions in the midst of a migraine. I like my neuro a lot, but if this class of CGRP meds don’t provide any relief I am going to try the NYU Langone Headache Center for hopefully a more multi-disciplined approach. Even my neuro says that while he knows a great deal about migraines, that is all they deal with at Langone. If anyone here has experience with Langone I would love to hear it.
Adkrauss, I’m not sure our paths depart that much. When I look back over my calendar, my pain levels were lower than prior Amovig but every day I had to use my Cefaly and medical marijuana do the pain was still significant enough to keep me in bed. I think I just wanted to be
Believe it was working because it was for so many others and I felt like this was my last hope. But now I’m excited to learn about the clinic you mentioned. I’d go anywhere if they offer something different than what I’ve already tried. But I’m not looking for a second opinion. And I’m afraid that’s all I’d get at some of these places. Do you live near it? I’m in Chicago but would gladly travel. Oh I meant to mention that when my migraines returned after my 11 day break, they are worse than ever. 24/7 and nothing breaks them. So I have no idea what’s going on this month. But it started great and now it’s miserabke.
KBlange – Sorry to hear things aren’t on as much of an upswing as I thought. I believe there are a number of very good headache clinics throughout the U.S and probably in Chicago as well. Yes, I am under an hour from the NYU clinic in NYC. I think Pittsburgh has another highly regarded clinic, whose name escapes me. Has the medical marijuana helped at all?
Adkrauss. There really isn’t a reputable multidisciplinary clinic in Chicago. Is the place your thinking of in PA The Jefferson Clinic? As for medical marijuana, after almost a year of experimenting with different strains and delivery methods and paying a small fortune, I finally found two strains that consistently take the pain away. But if it’s a bad one, I have to vape a lot and while I don’t get high, they do sedate me. But I’d sure rather be in bed with no pain than with it! I hated pot back in the day so this was very hard for me but I have no other choice. And because I have lupus I’m legal in Illinois.
I have waited 2 months (as of this Friday) and 2 70 mg doses before posting. I was chronic for close to 4 years, tried all the preventatives, none worked. triptans abort well for me, but even at 2-3 per week I was noticing they would take me into bad spirals where I would get maybe a day of relief before another rebounded back on me–leading me into the ugly world of daily, intractable headaches. I switched from triptans to Migranal 10 months ago and settled into an almost livable pattern of having a migraine very reliably every 6-10 days. But then came Aimovig–
I had a migraine the night I first took it 2 months ago. I took the shot and went to bed hopeful I might not wake up miserable. I woke up with a mild migraine that went away over the morning with no treatment. This is unheard of for me. Migraines never just go away, they just gather strength. Since then, for the past 2 months, I have had 3 other headaches, each of which responded to advil or went away completely on their own. So, I am 60 days without an abortive! My life is changed. I have no side effects whatsoever, and the pain of the shot for me is trivial compared to a migraine. I am so sorry it is not working for everyone. I hope you find a way to get the relief we all dream of, and I hope this lasts for me.
Gracious, I’m delighted for you that your doing so well on the Aimovig! One question: what’s miganol? I’m on imitrex injections and since I started the Aimovig.’, it’s a crapshoot whether it will work or not. So I’m curious about an abortive that’s not a triptan. Thanks!
Migranal is the name for the marketed ergotamine. It’s used in the er for migraine a good bit but has gotten some bad press I believe and been buried by the triptans. That said, it’s a good option if you need to go away from triptan. Note 2 things
You can’t take a triptan within 24 hours of this and it is unfortunately a nasal spray so it’s highly variable how much gets transferred. See what your doc and insurance say
Hope it helps
Gracious, thanks so much on the info on Migranal. I will definitely bring it up with my migraine neurologist on Mondays appointment. Prior to taking Aimovig one or two 59 mg imitrex guaranteed me a pain-free day. Once I started Aimovig nothing can guarantee me anything anymore. I’m now on imitrex injections.took two this morning and got no relief. Then I took two fiorcet and have been migraine.free ever since. It would be great to have another tool in my arsenal. Again thanks for the info and good luck on your quest for relief!
This is my second month of Aimovig 140 mg. First month was terrible–ended up in 2 hospitals and was admitted for 3 days. My migraines seemed to change and are now more in the face and entire head. Second month, did Aimovig and had the WORST migraine of my life. Not going to use it a third time. It is making me worse, not better and my abortive are useless.
Has your abortive meds started working for you yet? Mine are no longer working as well and I’m 32 days after the injection. I don’t plan on doing another. I’m in hell right now.
Is anyone considering switching from Aimovig to another CGRP? If so, how long do you need to wait until you can start the new med? Today will be by 5th injection of 140mg of Aimovig. The first three months I had two migraine-free days. Last month I had 11 in a row! But the rest of the month was a nightmare because since starting the Aimovig I have nothing to break my migraines. So depending how this month goes, I’m considering switching to Emgality. But I’m getting different answers in how long I need to be off Aimovig before I can start it. Of course Ally support won’t help me because I’m just the patient. My doctor needs to contact them. He wants me off for two months. But I reached out to one of the leading researchers of CGRPs, Lars Edvinsson, and shockingly, he replied. He says the science says you don’t need to wait. So I’m curious if anyone else looked into switching and what they learned. Wishing you all a migraine-free day!
kblange, yes I am planning on switching to Emgality (most likely) after the Aimovig is out of my system, which as you stated, is a complicated guess. My specialist is Dr. Dodick, so I definitely trust his information, and he told me I need to wait 60+ days.. I am interested by what Lars Edvisson said, and happy he responded to you, but I would be surprised that you wouldn’t have to wait at all? That means we could be doing BOTH CGRP-type drugs at the same time such as Aimovig along with Ajovy/Emaglity, and that sounds dangerous and counter indicative.
I think no one knows, so it is just “safe” to wait 60+ days, since the half life is 28 days. Let us know if you switch. I am chronic intractable/ NDPH and only had side effects from Aimovig, which I reported (flu like malaise and menstrual delays). Huge let down.
Migrainedeath, thanks for the quick reply. You are so lucky to have Dr. Dodick as your specialist! Although I do love and trust mine. As for waiting the sixty days, I’m hoping you mean from your last injection of Aimovig, right? I misspoke. Dr. Edvinsson meant that for my next injection I could switch to Emgality, NOT to take both at the same time. But given what you’ve told me, I’m not going to push the issue with my doctor. Does Dr. Dodick think you still might have success with Emgality when you didn’t with Amovig? I know they work differently but I’m starting to wonder if CGRPs are meant for me. I’m daily intractable. Not sure what NPDH means? Thanks again for your input and I wish you great success in Emgality!
Kblange – I am considering switching to Emgality as well, but have not yet discussed with my Neuro. I expect to have that discussion by next week, when I will be in receiving a nerve block, as discussed below. I will report back here ASAP.
I took my third 140mg dose of Aimovig five days ago (with first two doses being 70mg and 140mg) and still no relief whatsoever. Apparent side effects experienced with second dose, incl. vertigo like dizziness and extreme muscle aches, have subsided with third dose, but stomach queasiness is worse and still lightheaded. And who knows about the fatigue given the life we lead with chronic daily migraine.
If I got 11 days migraine free I would consider it a smashing success. However, I recognize your plight as the rest of the month your abortives are not working — which is an extreme nightmare. At least I am still getting some relief from my abortives taken daily, but as previously reported, they do not seem to be as effective after starting Aimovig. The ONLY thing that has given more than a day of relief has been nerve block/trigger point injections and ironically/tragically, I recently learned that my insurer has denied payment to my Neuro for the nerve block as not being a proven effective course of treatment !! I will weigh in on that when I have a moment and the energy to respond.
I will probably fill my fourth dose of the Aimovig and decide if I am going to continue or stop shortly before the 30 day period. Like all of us, the “what if” possibility is a strong force in the decision, wondering was it going to be the next dose that finally made an improvement in the daily migraine.
Adkrauss, I’m so sorry you’re still not getting any relief from the Aimovig, but I guess that makes your decision to switch a bit easier than mine. Yes, those 11 days were heavenly, but I’m daily severe intractable so I spent the rest of the month in bed. Without any abortives, I even had to cancel my appointment with my migraine neurologist! Crazy. Plus I’m on the Bridge program. What if I find that the Emgality causes side effects or it doesn’t help at all? I’ll be screwed. So it all comes down to the injection I took today. We’ll see what happens.
I have the same problem with my insurance re nerve blocks so I’ve never had one. Do they really help you? Do you get occipital lobe blocks? I’ll try anything if it will give me relief. Again, I’m really sorry the Aimovig has only given you side effects. Not fair!
Kblange – Yes, they are a combination of occipital nerve blocks and trigger point injections in upper back/trap area. However, at most I get 5-7 days of relief from that, but its something … And as previously mentioned, I tried Botox for like a full year and no relief at all.
adkrauss, I just happened to see that you only get 5-7 days of relief from nerve blocks. I had one and it wore off in less than 7 days. I did get two and a half zero headache days in that week, though! I never realized how it would affect me psychologically to have some headache-free days. I was so accustomed to the chronic pain, and to get relief was actually distressing because it reminded me there is another dimension to life (that I can’t have every day).
Skipper – Yes, I understand completely your mixed feeling about a couple of headache free days, as being a tease as what life could be like without waking up to the weight of the world already on you before you even face the day. To be able to enjoy a bright sunny day with the birds chirping… I could go on.
I will be starting with my first shot this afternoon. Hopefully it will work.
Has anybody else had bone and joint pain start/increase after a couple months? I am due for my 3rd injection next week and over the last couple months I have had a severe increase in my joint problems in my one shoulder (I cannot for sure say this is related to Aimovig), however, I have started to have alot of bone/joint pain in my wrists, ankles, and my right thumb (bottom knuckle joint leading up to middle knuckle joint) with swelling. Also had more pain in my back than is my normal amount. I haven’t seen much of a difference in my migraines yet, but haven’t seen any increase either. Just concerned about these other symptoms.
Thank you adkrauss.
brookiepooh81, I’ve come across a lot of comments similar to yours about joint pain and fatigue from aimovig. Do a web search, you will find them. I was afraid to try it.
Yes, I had seen some of the same. Figured I’d ask in a more appropriate place! I have a follow-up with my Neurologist next month, so need to be prepared. Thank you.
Someone posted a site to calculate the half life of a drug. I assumed since this drug has a half life of 28 days I would have another month of this nightmare. That’s not the case. I did the calculations for the 70mg/28 day half life (672) hours and it calculates to 196 days in your body. I don’t know how I’m going to survive this with my abortive medications (triptans) not working. My god I wish I had known all this, and wish I had never taken this med.
Eastcoasta, seeing those numbers put me in a state of complete panic, especially since so far my 5th injection is not working like my fourth did. When I see my migraine specialist next week I’m going to ask him to think out of the box for other abortives besides triptans. I do have fiorecet and that still works but there must be other meds for people who can’t take triptans, don’t you think? I’m legal for medical marijuana so that helps but I don’t like the side effects and when I wear my cefaly, I have no migraine pain. Do you have any alternatives besides triptans to help you through the day? Are you like me with 24/7 pain (except when I’m sleeping)? I dont believe this side effect did not occur in the study when at least five of us have mentioned it. Sounds fishy to me. Of course now I regret taking the 5th injection but I was too far in to not give it a go. Be well
Eastcoasta, I forgot to ask you if your triptans stopped working suddenly or gradually? Mine were gradual over the first three months. Became unpredictable and if they did break them, only lasted a few hours wasn’t until last month (month 4) that they stopped working all together. Just curious if there’s a consistent pattern going on.
I was in a complete panic myself when I used the drug half life Calculator last night. My triptans stopped work since taking the Aimovig. I could normally break a migraine with 2mg of zomig and an excedrin. Now since Aimovig, I have taken 5mg zomig and 6 excedrin and can’t break the migraine. I’ve taken my zomig and 4 excedrin today and can’t break this. I can’t stop crying today. I didn’t think life could get worse. At least bet the Aimovig I could break this pain with my meds. I’m scared to death of what’s ahead as this wears off. I took the shot 32days ago. I find it hard to believe that in the trials no one experienced these side effects. Amgen will probably make all their money before listing these side effects. There’s also a group on a Facebook page people can join called our Aimovig adventure. Many others also experiencing side effects. I just wish someone who has gone off this drug could tell me what they experienced, when their meds worked again, and if this permanently changed their migraines for the worse. And to answer your question I do not have anything else besides the triptans for my migraines.
Eastcoasta , my heart breaks for you. The only positive news I can give you is that at least for me, it’s just my triptans that stopped working. I shouldn’t say “just” as I know we all rely on them the most to break a migraine. The good news is my fiorcet seems to work better. I took two at 11 am and have been migraine-free since 1:00. Can you call your migraine specialist Monday morning and see about trying a non-triptan abortive to see if it helps? I too am terrified that Aimovig has taken away my triptans for good, but the rational part of me is sure that they will slowly start to work again as the Aimovig leaves my system. I’m lucky that I qualify for a medical marijuana card due to lupus. As that gives me some relief, although it’s definitely not my drug of choice. And I agree with you that this awful side effect most have shown up in the trials. I hope you can find a non triptan abortive that gives you some relief and I hope all of us whose triptans no longer work eventually find out it was only temporary. Take care
Kblange thank you so much for your message. I will call the neurologist and see if they will write me a script for fiorcet. I’m normally scared to death to take anything because I’m so sensitive to meds. I don’t take pain meds because they make me sick. I hppe things get better for you soon.
Eastcoasta, I also can’t take pain meds. They make my headaches worse! Fiorcet comes in two forms: with and without codeine. Obviously , make sure you ask for the one without codeine. Someone else on here can’t take triptans so she takes something called migranal. I know nothing about it except it works great for her. And I’m going to bring it up to my dr. when I see him in two weeks. I hope tomorrow is a better day.
Eastcoasta, I’m a goof. I googled migranal and it’s the brand name for a very long word but shortened it’s known as DHE-45. It’s not a triptan nor a narcotic and I have the nasal spray under my sink! I haven’t taken it lately because I thought it was a triptan. Silly me! I’m going to try it for tomorrow ‘s migraine and let you know if it works or not. Wish me luck!
Kblange thank you so much again for your responses. I really appreciate it.
Hi, was responding to someone’s post here about their Fioricet working better.
I took my third dose of 140 Amovig a week ago and for me this stuff is amazing. I’ve gone from 5 headaches a week to almost no headaches. I have a serious autoimmune disease and I am always afraid to start something new. No joint pain or other bad effects for me so far and I’m prone to them.
(I know some people here are reporting bad side effects and they sound horrible – I would’ve probably not tried Aimovig if I had read some of these posts before. I guess everyone should weigh the risks vs. benefits but I’d hate to see anyone miss out on this drug which has been miraculous for me.)
But what I wanted to so is reply to the person that said their Fioricet is working better. Last night I had one of my first headaches since starting the Aimovig – my fault I was reading from my iPad and cell which has always triggered migraines in the past.
So I took one Fioricet in the morning and wow it worked right away. Usually I end up taking more than one but I didn’t have to do that. I do not know if this is because of the Aimovig; but I’m hoping that the Aimovig in my system is making the pain meds work better and faster.
Good luck everyone.
On the drug half life calculator I entered
Half life 672 hours (28 days)
Here is the calculation:
eastcoasta, I am so sorry to hear of your continued suffering and I wish you peace. I think you should not bother with that drug half-life calculator because Aimovig is a “biologic”. It’s an antibody that affects receptors in your nervous system, so it works very differently than the substances they reference in that calculator.
Skipper thanks so much for your message. How does the biologic differ? Do you think it will be out of my system sooner? I don’t know how it all works.
I am not sure where this will show up in the thread, but hopefully kblange, you and eastcoasta will see it.
Regarding the studies on Aimovig, it is possible that the symptoms you are have were not seen as statistically significant, but it’s more likely they didn’t have any participants like you in those studies. If you look at the exclusion list, it’s quite extensive:
Key Exclusion Criteria
•Older than 50 years of age at migraine onset
•History of cluster headache or hemiplegic migraine
•No therapeutic response with >2 medication categories for prophylactic treatment of migraine after an adequate therapeutic trial
•Use of a prohibited medication, device, or procedure within 2 months prior to the start of the baseline period
•Taken ergotamines or triptans on ≥ 10days per month during the 2 months prior to the start of the baseline period
•Taken simple analgesics on ≥15 days per month during the 2 months prior to the start of the baseline period
•Taken opioids or butalbital containing analgesics on ≥ 4 days per month during the 2 months prior to the start of the baseline period
•Excluded medical conditions: chronic pain syndromes, major psychiatric disorders, seizure disorders, malignancies, HIV infection, or hepatic disease
•Excluded medical conditions within 12 months of screening: myocardial infarction, stroke, transient ischemic attack, unstable angina, coronary artery bypass surgery, revascularization, drug or alcohol abuse
To be randomized into the study after the completion of the baseline period, patients had to have demonstrated at least 80% compliance with the eDiary.
I forgot to post this:
Key Inclusion Criteria
• Adults 18≥ to ≤65 years of age
•History of migraine for ≥ 12 months prior to screening
•Migraine frequency: ≥ 4 and < 15 migraine days per month on average across the 3 months prior to screening and < 15 headache days per month on average across the 3 months prior to screening
•If only one prophylactic medication was used, the dose had to be stable within 2 months prior to the start of the baseline period and throughout the study
Skipper-thanks for your post
You’re welcome. I just checked drugs.com and rxlist.com and they’ve added muscle spasms and cramps to the list of side effects. Those weren’t on there just a few weeks ago when I looked.
Skipper, thank you for all your information. It’s very interesting. I definitely would not have made the cut for the trials for many reasons. I want to clarify one statement to make sure I have it correct. I have daily severe intractable migraines. You said you couldn’t have more than 15 migraines a month? Is that right? I was under the impression the trials included people like me.
I need to do my homework before trying another CGRP (I have to wait two months so I have lots of time to research). Did you find this data on Aimovig’s website? If not, where? Thanks again!
eastcoasta, I found the info in a report made by the FDA prior to approval. Here is the link: https://www.accessdata.fda.gov/drugsatfda_docs/nda/2018/761077Orig1s000MedR.pdf
You will have to excuse my poor reading comprehension, as I missed the part where they did _one_ separate study on people with chronic migraine. (It’s all in the same report, scroll down)
For the chronic migraine study you had to have 15 or more headache days per month of which ≥8 headache days were migraine days.
But you were excluded if you had:
– Chronic migraine with no pain free periods
– Taken an opioid for more than 12 days during the three months prior
– Taken butalbital for greater than 6 days during the 3 months prior
– You had tried and failed meds from more than 3 categories (for your migraines)
– You were out if you had fibromyalgia, chronic pelvic pain, major psychiatric disorders, seizure disorders, significant neurological conditions, malignancies, HIV infection, hepatic disease, Gilbert’s syndrome, poorly controlled hypertension,
– You were out if you have any of the following in the prior 12 months:
myocardial infarction, stroke, TIA, unstable angina, coronary artery bypass surgery, revascularization, suicidal ideation, drug or alcohol abuse.
– You were out if your body mass index was >40 kg/m 2
And in the same document, for the chronic migraine study, is this:
” […], the following medications related to migraine treatment
were excluded throughout the study and the patients had to be free of these medications for two months prior to the start of the baseline period:
•divalproex sodium, sodium valproate, topiramate, carbamazepine, or gabapentin
• all beta blockers
• all tricyclic antidepressants
• flunarizine or verapamil
• venlafaxine, desvenlafaxine, duloxetine, or milnacipran
• botulinum toxin (injected in the head and/or neck region),
• lisinopril or candesartan
•butterbur, feverfew, magnesium, or riboflavin
•clonidine, guanfacine, cyproheptadine, methysergide, or pizotifen
The following medications were excluded only if they were being used daily for the purposes of migraine prophylaxis: fluoxetine, fluvoxamine, acetazolamide, picotamide, cyclandelate, ergots, steroids, triptans, nicardipine, nifedipine, and nimodipine. If these drugs were being used for
migraine prophylaxis, then the patients had to be free from them for at least two months prior to the start of the baseline phase, otherwise the dose was to remain stable throughout the
Skipper, I have been reading through the link you posted of the FDA report for approval of this drug and it shows many people experienced the same side effects people are mentioning on here. Amazing how they didn’t end up on Amgens website as possible side effects. I found this on the report:
The most common adverse events were URI/cold/flu-like illness, injection site reactions, diarrhea, and arthralgia.
Skipper-also have been reading the report for FDA approval shows the patients adverse reactions as well.
eastcoasta, It looks to me like the cramps and muscle spasms were reported in 2% to 4% of participants. While that’s not high, it’s about the same numbers as constipation, so yeah, why wasn’t it listed. The rates of infections were significantly higher than placebo as well, which makes me wonder what is happening with the immune system. Did you read: 8.4.2. Serious Adverse Events? “Of patients exposed to erenumab, approximately 5% reported a serious adverse event.” Some people had very scary illnesses. Two deaths, two spontaneous abortions, half a dozen cancers, DVTs and pulmonary embolisms, loss of consciousness, head injury, infections, etc. and it’s creepy how the reviewer just shrugs them off.
Skipper, it’s super creepy. I’m definitely stopping Aimovig but want to find a similar report about Emgality. Do you have any idea how I’d find it?
Skipper-yes I did read that section on the fda report of the adverse events. How is it these aren’t even mentioned as “potential “ side effects on their website. I am beyond livid I used this drug. I just read a post on Reddit where someone stated her migraines have gone chronic since 5e shot and triptans aren’t working. She went off the Aimovig and two months later nothing has changed. I pray to god this doesn’t permanently screw me up with worsened migraines than I had. Also having chest pains again. Someone else posted on reddit they are having really bad chest pains since the shot.
It’s possible that you’re having an immunogenic reaction. Has anyone discussed the bad side effects with their doctor and gotten treatment? If so what? Steroids?
Skipper. Buried in very fine print on the insert states an effect can be immunogenicity. So that’s probably what is happening to a lot of people. Their bodies are producing antibodies to this drug. Where you stayed it’s a biologic do you know how long it will last in the body?
eastcoasta, I do not know how long it would last in the body, and nothing I’ve read has led me to guess. Immune systems are very individual and they do what they want.
To me, it looks like a lot of chronic migraine sufferers were EXCLUDED so there is little or no data how Aimovig will affect them.
To reiterate the posts I made earlier:
You would have been excluded from the study if any of the following pertain to you:
– Your migraines started less than 12 months ago
– You have less than 4 migraines per month
– You have greater than 15 migraine days each month
– You have greater than 15 headache days per month
– History of cluster headache or hemiplegic migraine
– You tried 2 or more different kinds of meds for your migraines and neither of them worked.
– You take ergotamines or triptans on 10 more days each month.
– You take simple pain relievers on 15 or more days each month.
– You take opioids or butalbital containing meds on 4 or more days each month
– You have a chronic pain syndrome, psychiatric disorder, seizures, cancer, HIV, liver/hepatic disease
– You had in the previous 12 months: myocardial infarction, stroke, transient ischemic attack, unstable angina, coronary artery bypass surgery, revascularization, drug or alcohol abuse.
I live in Canada and I had researched Aimovig and followed it’s release in the USA ( May, I believe). I tried to get contacts of my physicians as I would have drove across the border and went to whichever physician I knew I could access and received the RX. However, that did not happen. My neurologist did send in an application for the Novartis GO program and I am now all approved for free supply. Aimovig is set to be available here the week of December 3rd, 2018. I am prescribed 140 MG, so 2 injections. It will be delivered to my door and I am comfortable self administering so, there is no barrier there. I am looking forward to, hopefully, some relief!!
eastcoasta, I just googled for “fda report emgality”. Here is the link: https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/761063s000lbl.pdf
Thanks Skipper. I think kblange was asking about it. I’m done with any of these drugs that are Biologics and stay in your system this long.
Yes skipper, it was me. Thank you for the information. I’m not sure what I’m going to do, but whatever it is, this time I’m going to be informed!
eastcoasta, In that document, I didn’t see information about adverse events, and it seems the longest period they’ve studied participants is only 6 months. You will find the relevant page on the FDA website, here: https://www.accessdata.fda.gov/scripts/cder/daf/index.cfm?event=overview.process&ApplNo=761063
There is a “letter” there (similar to the one for Aimovig and Ajovy), in which the FDA is requiring them to do further studies. There is no “review” for Emgality, like the one you read for Aimovig. There is a review of Ajovy.
I see you’ve replied while I was writing. I have learned a lot here, how to look up information on any drug the FDA has looked at. I think you are wise to avoid the antibody-based drugs, given the bad experience you’ve had. Stay positive, and don’t let the horror stories from others bring you down. Our bodies can be tougher and smarter than we give them credit for. I hope you feel better and fast! Thanks for the conversations.
Skipper-thanks you so much for all the info and your kind words. I have connected with a Facebook group for Aimovig called our Aimovig adventure. Some people who have gone off it said it took a while for them to start feeling better. One person said 3 months. Another is almost at 3 months since discontinuing and still doesn’t feel right. So If it’s 3 months for me I’m looking at Christmas time. Wow. Had no idea this stayed in the body so long.
Hi, I’Auby. I have a weird migraine profile: I get them about every 4-6 days for 36-72 hours. They are disabling and keep me doing a lot things. Official Diagnosis- refractory, irretractable migragine, but Inqualidu aa chronic as well. I also have GAD, MDD-recurrent (uncontrollably), and Commom Variable Immunedeficiency-1Selective Antibody Deficincy.
Now to my question- like most of us I take TONS of meds my sinuses and allergies are nasty as well. I am currently in a treatment run of SQ IgG in fusions to help with my immune system. I am nervous about adding not only another med, but another antibody.
What are you thoughts on Aimovig? Is it worth the risk of multiple drug-drug iterations? I want the niitty gritty details. Good? Bad, fantastic, and ugly.
I also have common variable immune deficiency. I stop the IV treatments last year after having two episodes of aseptic meningitis. This year I tried it subcutaneous and it also gave me problems. again I stopped it.
In spite of having other health issues I was having debilitating migraines and decided to give you aimovig a shot. I took my injection October 3, 2018 and thought I did OK in so far as thinking I was not getting side effects. This past month I’ve had more muscle pain joint pain and aches pains headaches and severe constipation. Constipation was not really bad until this past Wednesday october 31st 2018. I’m not sure if I should do this next injection. I would like to see if some of the muscle and joint pain subsides. I’m tending to think of the constipation came from something else. Why would it show up 28 days after my injection. I had started a new medication Librium 10 mg and perhaps that’s what did it. Right now I’m still having severe IBS pain cramping and swelling from Wednesday. Maybe I should wait a month and then try the Aimovig again. I don’t think I should do it now. My Fibromyalgia has been so much worse. I don’t know if it’s the injection or something else
Thank you for responding! We have a bunch in common. My GERD is new though. I saw my immunologist yesterday, and he would like to wait for more research to be out in the anti-CGRPs before mixing (min a year); which, I’d about 1month before I would come off 2y treatment if SQ IgG. So, with someone who knows more about antibodies saysing, “Let’s go slow,” I am going go wait. We can only learn more. As to your severe constipation question. I obviously haven’t experienced it, but my neuro warmed me that was one of the only symptoms her pts have complained about. Take care!!!
Sorry for the typos again. I’m speaking into my iPhone and it has a mind of its own.
Well, I’m officially done with Aimovig. I’m daily severe intractable. First three months = 2 migraine-free days, 4th = 11 migraine-free days and 5th = 0. Plus like many of you, my triptans have stopped working. But my doctor gave me Reglan to try with my meds. If often helps them work better. I haven’t tried it with a triptan yet but this morning I took it with my miganol which also stopped working and it worked! Reglan is an anti nausea med. so you might want to give it a try if your triptans aren’t working as well since you’ve been in Aimovig. Be well!
I have between 12-20 migraine days per month. I have tried about every therapy out there from acupuncture to topamax with little to no success. I just took my first injection of Aimovig 70mg last Thursday (5 days ago). I have had no pain at the injection site and no constipation, however, the morning after the injection I developed a horrible upper respiratory infection. I have been in bed now for 4 days and will prob. be out again tomorrow. This is the worst cold/flu I can remember having. I don’t know if this is a coincidence or if the Aimovig caused this. Has anyone else experienced this after taking Aimovig?
pain247-I have read several people getting UTI’s on the facebook forums you can join discussing these new medicines.
I am 21 years old and have dealt with migraines almost daily since I was 8. I am on month 4 of amiovig and I have noticed improvement to where I think the amount of migraines I received have been reduced about 50%, which is a lot for someone that gets them almost everyday. However, I am glad I am getting some relief but I literally hate this shot with a passion because it is the most painful 10-15 seconds ever!! I already have a phobia to needles, which I’m not over exaggerating about. I’ve put ice on the injection site for a couple of minutes to where I didn’t even feel the needle be injected in me and I have even tried different spots on my thigh to place the injection at. So I’ve figured out the moment the medicine is exiting the needle into my body/blood stream, that’s where the pain is coming from. It doesn’t even feel like a regular flu shot but instead it gives you so much pain for a good 10 seconds that all you can do is scream and tear up. Please comment any recommendations for reducing pain or if there are any other injections that work just as good as amiovig but are less painful.
Allison – I am glad to hear you’re getting some relief with the Aimovig, but sorry to hear the shot is so painful for you. I do not find it painful at all, but that could be because I am so used to self injecting meds/checking glucose levels, between imitrex and insulin for diabetes. Are you making sure it is at room temperature before injecting, because that will increase pain level? Also, perhaps try applying less pressure when you inject, being it doesn’t take much to release the safety lock. On that last point, I did have occasion where a different brand of imitrex injection gave me significant pain because it required so much pressure to release the safety lock, I would get black & blue. By chance, the pharmacy gave me a different brand one time and I discovered it was world’s better, only because it required less pressure. For anyone interested, the brand of imitrex injection I now use is by Sun Pharmaceutical.
On a side note, I see you mentioned you have taken your fourth dose. Did your relief come from the first dose or at some later point, because I am due for my fourth dose in about 1 week and am seriously thinking about stopping, as doses 1-3 have not provided relief and side effects have continued.
Are you letting it come ALL the way up to room temperature? For me it hurts a little, but only for like 5 seconds. The pharmacist from Amgen said if you don’t let it come all the way up to room temperature it will hurt!!!
I’m 62 and I scream too. At least it doesn’t last long.
I find the the Aimovig solution almost unbearably painful going in, as well. It is not the needle or the pressure, but the solution. Luckily … that pain dissipates quickly after the injection is complete.
anyone succeeding with Aimovig that has made a decision about Botox moving forward? I’m almost 3 months in with Aimovig and have gone from 12-15 migraines a month to zero (3 if you count a few mild instances that cleared within 12 hours). I didn’t think Botox was helping much before Aimovig, and suspect dropping the Botox would have little effect. but another part of me wants to change nothing while I’m getting such relief. thanks
Hi Gracious, I hope this shows up under your question. I am having a similar experience to you in regard to Aimovig.
I was taking Topamax and getting Botox before I started the Aimovig. It worked like a charm the first month (140 mg) and I didn’t get one headache. So my neurologist took me off the Botox and Topamax .
After the second shot, I started getting an occasional migraine but I was also looking at the my iPad screen a lot which is a trigger.
So my neurologist put me back on the Botox along with the Aimovig and that’s made a difference. So for me, I’m doing the Botox along with Aimovig.
At the same time, I’m not completely headache-free like I was after that first dose, but close, so I am tempted to add the Topamax because I wonder if it was the Botox/Aimovig/Topamax combo that stopped all my headaches but I’d rather not do the Topamax again.
Bottom line – I wish I had just stopped either the Botox or the Topamax, when I started the Aimovig, but not both like I did. It’s harder now to go back and figure out which one was helping the Aimovig most.
Best of luck. I am so grateful the Aimovig has worked so well on me.
I haven’t dropped botox, but I’ve been pressured to because insurance is currently saying it will cover only botox OR a cgrp. I am currently on botox, aimovig, plus 3 other preventatives. But when I went to the headache specialist and said I was going to have to pull botox because of $$ they freaked out and said not to, that they suspected it was working well in combo, and gave me samples to stay on aimovig a bit longer while hopefully insurances maybe get a little less stingy about what they’ll cover.
I was using Botox and getting relief for about 3 months after the injection, then the migraines would reappear. I switched to Aimovig in July. It worked well until October. Now the migraines are back. Triptans never worked for me and still do not. Has anyone had a similar experience? Considering switching to Ajovy or Emgality. Has anyone made the switch? Thanks
I made the switch to Emgality! I had absolutley no relief from Aimovig, and I also had side effects….horrible muscle pain and extreme fatigue.
I only started two days ago…but here is what I can tell you so far:
I took the loading dose of 240 mg (2 120mg shots) and they hurt like a son of a b!tch going in, the pain didn”t last after the injection.
And about two hours later this immense feeling of fatigue came over me (as if you’ve taken a pain killer), it was close to bedtime anyway, so I just went to bed. The next morning I had no lingering feelings of fatigue and have had none sense and so far no muscle pain.
I have been in a viscous migraine cycle since the beginning of October, so I also don’t have much relief either…but I didn’t expect to wake up cured. I am happy to keep everyone posted, but I think I do it under the new feed specifically for Emgality. Fingers crossed.
I have some similarities to you in terms of meds. Triptans don’t work for me. With botox, I don’t know if your doctor explained this, but Botox wears off completely every 3 months, and even within that 3-month cycle, it’s sort of typical that each time, it works best for the 10 weeks right after administration and then those last 3 weeks before you’re due for your shots kind of suck :). So if you had some relief, I might consider talking to my doctor and not entirely writing botox off as a fail. My doctor has me do botox in combination with a CGRP (I’m currently on Aimovig and 3 oral preventatives), which is giving me some relief. Not perfect. But better than I was before.
I am responding to your response to Gracious……
I know a lot of people hate Topomax or Dope-amax as it is often called!!! and I don’t know how long you’ve been on it or at what dose, but I can tell you in my case…for me the side effects do go away. I have been on it for well over 10 years and I take 300mg a day…..yes 300. i use it for both migraines and mood stabilization and I have zero plans to go off it. So maybe it was the combo of all 3. We all know with migraines it’s trial and error over and over and over again. Just a thought from a Dope-amaxer for life 🙂
Hope it works out for you!
Thanks Dana, i just saw your response – I’m still learning how to navigate around here.
I may go on the Topamax again because I think it was the combo cocktail of Aimovig, Botox and Topamax that gave me total relief. I just desperately want to ween my meds down.
With just the Botox and Aimovig, i need an occasional Fioricet as well; i didn’t have one migraine the first time i used Aimovig wth the other two.meds.
Btw,my Anthem Blue Cross are covering both ot them despite being told by my doctor’s office that it probably wouldn’t. So yay me.
I’ve been reading a lot of the replies but had to stop be cause headache turned into debiiitating migraine. I woke half hour ago 9:00 am!!! A first for me in a very long time! It usually happens when I am getting sick. Last night I felt very congested. Ok took allergy decongestant and Relpax 40 …also did some sinus rinses and attempting hot shower. Double whammy.
Anyway, I only tried one injection of Aimovig And it gave me awful side effects. I also have fibromyalgia but the injection made it 10 times worse on a daily level. Plus I experienced the constipation which I can’t afford…. even with stool softeners. My doctor decided that it was not for me because I did not get any relief of migraine whatsoever. Also he did not want to risk another hernia from abdominal pressure due to constipation. He put a request in for Ajovy. I’m waiting to hear back if it was approved. And then will decide if I want to take it now or wait until after the holidays. Too many health challenges right now and I’m not sure I want to throw something else into the mix. I’m sorry so many of you have so many migraine issues. I understand and know how it feels. I’ve had daily headache and migraines for years. My first migraine started 45 years ago. Wishing everyone some relief from the pain today.
It’s only been two months, but I think I’m one of the people it doesn’t work for, at least not at the 70mg dose. I’ve had worse migraine pain since starting it than usual, and no noticeable reduction in migraine days.
Anyone out there found that the higher dose worked for them after the low one didn’t at all?
Same boat here but a little ahead of you. I took three months’ of injections at the 70 mg dose. My migraines initially worsened for a few weeks, and – scariest part was my triptans suddenly stopped working as well overall. Saw the neurologist and we went up to the 140 dose about two weeks ago. Same: migraines seemed worse/less responsive to triptans. We agreed to try this dose for 3 months then move on to Ajovy. I hope the triptans start working better again!! Hope this helps. Also, tmi, but constipation is definitely a side effect that doubled with the higher dose. If that’s already a problem for you, it could be troublesome. Best to you!
Hi, one week ago I injected my second month 140 mg of Aimovig. The first month I had some relief, but it seemed to let up after about 3 weeks, I ended up in the ER (haven’t had to go there for 10 or more years). On the same day I received the second dose in the mail and injected the next day. Then 3 days no pain, more energy and clearer thinking. The next day…crash. I’ve been off and on pain wise this week (I have chronic daily migraine), when it hurts, the pain is more severe. Any other thoughts on the pain worsening as a side effect?
At two months on the 70mg dose my side effects have been constipation and worsening of pain during migraines, but no gain in migraine free time. I don’t have any abortive that work for me, so I’m left with lifestyle management and ice packs.
I’m terrified to try the higher dose in case the change in pain level continues. One ER visit due to unusually severe, persistent pain is enough – it was the first time I’ve gone based entirely on the pain level. I’ve had migraines since childhood but I’ve never been scared of them like I am now.
My neurologist appointment is right after thanksgiving, I’m trying to figure out how to explain my concern without sounding like I’m just panicking over coincidental bad attack.
By Nancy Harris Bonk Moderator
Thank you for sharing that with us. It’s so helpful to hear how others are managing these new medications so we don’t feel so alone.
I’m sorry to hear you haven’t had luck with an abortive. I can tell you I’m unable to take the pill form of triptans, yes, I’ve tried them all, but can use the nasal sprays. I wonder if another delivery system is something to discuss with your doctor?
Krystolla, Thanks for sharing your experience with Aimovig so far and sorry to hear the pain has worsened for you. At least mine has been mixed. I think you explained it well and can pass on the same kind of information to your neurologist. I understand your concern about increasing the dose, I’d be reluctant as well.
The only abortive that works for me is oxycodone and I don’t take it more than 2x per week. The migraine specialist I want to see, won’t take patients who use opiates. My appointment with her isn’t until the end of February and I’m hoping the aimovig will help me not have to use oxycodone in order to live my life.
I look forward to hearing updates from you and wish you the best!
So, the lst does of 70 did not do anything. two weeks ago I had the 2nd injection and then a few days after that had yet another round of Botox as my Neurologist thought the double punch might help…nope, nothing.
so, will be trying Ajovy next and also will have a medial branch block…and so it goes 🙁
By Nancy Harris Bonk Moderator
I agree :(.
Fingers crossed for better luck with Ajovy!
Has anyone used Aimovig for 3 or more months with gradual improvement?
I’m not sure how much mine would be called “gradual” but here is my answer.
My first month was sketchy, still migraines, but they sort of shifted around. By the second month, I was doing better. Had some migraines the third, but I also tried more trigger exposures (still can’t expose me to the bad stuff, bummer.) I’ve been on it for four months. Overall? Better.
Lyn.777 – I would like to know the answer to this question as well, since I have had three doses with no improvement (plus side effects) and am strongly considering not continuing with fourth dose. Thanks.
I did my first injection just over a week ago and I haven’t had a migraine since. HOWEVER, I have had terrible constipation. I received authorization from insurance and am participating in the $5 copay program. My first two doses were free from the company. I’m sure my insurance would rather pay for this than Botox. Any advice on the constipation?
As I’ve posted, I’ve had migraines almost every day for between 4 and 5 decades. I’m 83. For 5.5 years, no one would prescribe. All I thought about was escaping by killing myself but there were those who needed me….
When finally I got help, Fioricet, it came with constipation, of course. I took laxatives and as everyone knows, it’s sometimes necessary but its own kind of nightmare.
Then I discovered I never have to worry. It makes breakfast a bore after a while, but ended my problem perfectly.
A generous bowl of STEEL CUT oat meal every morning. Prunes are a trigger, but dried cherries aren’t (for me), so I dress it up with dried or jarred cherries, and use a little brown sugar (just a little!), and now I’m normal. I’ve thrown away my laxative collection!
You’ll experiment with the amount of oatmeal. A giant bowl if you’ve had a low-painkiller day can cause the opposite of constipation. So stop taking oatmeal for a day, and go back with a smaller quantity.
Before my oatmeal, as soon as I wake up, I have BIG cup of coffee to assist my codeine sulfate in helping with the morning migraine. The coffee does make it work better, and maybe it also helps constipation? No idea, but drinking a lot of water does, so probably a big mug of coffee does, too.
If you or others try my magical approach, do post. I’ve told doctors, including one who told me his father lived in pain because he couldn’t deal with the constipation, and I told him about steel cut oatmeal, and he was dismissive. His father is still in pain. Doctors are deaf to any information from someone who’s actually experienced, often for decades, the condition/s they prescribe for, have you noticed?!
By Jill M.
I used generic Miralax for the constipation I experienced in my first couple of months of using Aimovig. It helped tremendously. I took it every day for a couple of weeks and then gradually reduced to 4 days week, then 2 days week, then none. I only need it occasionally now. It worked wonders for me.
By Nancy Harris Bonk Moderator
Thank you all for sharing your tips and tricks for combating constipation.
I am going to be covered under a “Compassionate program” so I just heard I will be receiving Aimovig ( 140Mg) December 5th. Now , I also am booked for a surgery to remove my remaining ovary, in the hopes that this would minimize my migraines ( assuming they are hormone related).
So, today I think ” Should I go ahead with such a radical option as a third abdominal surgery in 7 years? “, or should I postpone the surgery and give the Aimovig some time?
Any thoughts? My OB/GYN is very easy to talk to and I am sure she would agree with whatever decision I make.
By Nancy Harris Bonk Moderator
Thank you for sharing your story with us. If it were me, I would not have surgery in hopes of reducing migraine attacks. It’s important to note migraine is a genetic neurological disease that is managed not cured. Think of it like asthma – it’s always there, with bouts of attacks or flares. Migraine attacks have many, many triggers including but not limited to hormonal fluctuations, irregular sleeping schedules, dehydration, skipping meals, smoking, alcohol and certain foods. Have you been able to identify any other triggers?
Something you may want to discuss with your doctor and try before having this surgery is short term Frova for hormonal migraine attacks. You can read more about this here; https://migraine.com/blog/short-term-option-for-migraine-prevention-frova/. I’ve spoken with many women who have had pretty good results with this.
By any chance are you currently seeing a doctor who is board certified in headache medicine, which is different than being certified in neurology? If not, I would encourage you to do so. These doctors are expert in treating migraine and headache disease and well worth time and effort. Let me share information with you on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and
I’m going to stop now before I totally overwhelm you!
Let me know what you think
I took my first shot of 70mg on Sunday 9/23/18 & on Friday 9/28/18 I developed severe pain on the left side of my abdomen. I spent the next month & a half having multiple tests with no apparent cause or relief. I took my second shot on Sunday 10/28/18 & on Friday 11/2/18 my entire abdomen was hurting. By early am Monday 11/5/18 I had visible muscle spasms on my right side that were pulling my rib cage towards my belly button they were so violent. I also had breakthrough bleeding 11/7 & 11/8 as well as muscle spasms on both sides of my abdomen. Nothing they gave me has given me any relief. Starting on 11/13, my heart rate started to rapidly rise to the 190’s & back down to the 70’s (in bpm) over & over in the span of a minute & stayed high despite no activity. I also began having spasms in my chest & upper back that make it hard for me to take deep breaths. I’m having issues regulating my body temperature & my left side seizes up & becomes very heavy & numb for hours at a time. Each shot was given in my upper right thigh with no adverse site reaction. My doctors have decided to have me stop the injections because they are sure my issues are related to the Aimovig despite not finding much of anything regarding these side effects online. I’m constantly tired, often not leaving my bed all day & if I do I sleep for the majority of the following several days. The pain from the constant abdominal spasms has caused me to lose most of my appetite & I’m constantly nauseous. I’m having trouble with my memory & my vision gets blurry very easily. I honestly can’t manage much more of this torture. I’m hanging in by a thread & no one seems to know what to do to help me even get comfortable. I’m losing my mind.
To PEINURSE: please wait on the surgery! I am taking my 3rd Aimovig dose today and it has helped a LOT. This is the first preventive drug that has ever worked for me. Definitely give it 30 days if not 60, if you can.
Hi all. I’m officially done with Aimovig and boy do I regret taking that last injection! I’m daily severe intractable so I’m pretty damn desperate. Here’s a brief summary of my Aimovig experience:
Months 1-3 2 migraine free days but significant reduction in severity and especially duration. This would last throughout my journey. Triptans not as effective.
Month 4: 11 migraine free days in a row but triptans not working at all.
Month: 0 effect and no triptans.
I’m on week 6 of going off and still triptans don’t work at all. Plus I’m back to 14 hour migraines every day.
Has anyone had there triptans start working again? I’m can’t take this much longer.
I’m so sorry you are still suffering. We chatted before on this forum. I only did one shot at the end of sept and by week 7 my triptans started working a little bit. Sometimes they don’t. I am 9 weeks out now and they are still iffy whether they work, but they do sometimes. I reached out on a FB forum asking people who discontinued aimovig if and when their triptans started working. I got responses saying their triptans worked anywhere from 6 weeks to 4 months after they stopped the aimovig.
I finally feel better aside from the triptans not always working and some muscle and joint pain. All the other side effects I had have subsided. I so hope you start feeling better soon. I know it was pure hell going through it. Take care.
By Nancy Harris Bonk Moderator
I’m so sorry to hear Aimovig didn’t work out. I know a lot of people were hoping it was “the” answer. Unfortunately like any other disease, what works for some people, may not work for others.
The other CGRP medications work a bit differently and may be something to discuss with your doctor. Dr. Dodick explains more here; https://migraine.com/living-migraine/cgrp-work-key-lock/.
Can you talk to your doctor about helping you break this current cycle? A steroid dose pack may be helpful or an infusion.
I hope this cycle breaks asap.
A week from today, December 10th will be my 5th Amovig injection. My headache specialist/neurologist started me on the 140 mg from the beginning. I’ve continued to get Botox injections every 3 months and trigger point/nerve block injections every two weeks (most of the time, unless my doctor is not having office hours on that specific day).
I can’t take any triptans or NSAIDS (I used to keep vials of Tordadol at home with syringes and draw it up to inject myself) ever again because I had a stroke in May of this year.
Sumatriptan injections were my go-to when I had a migraine. Right now, I really don’t have an abortive med, so I’m incredibly grateful that I’m one of the ones for whom Amovig
has fulfilled all my expectations. It’s worked incredibly well for me and I feel badly when I read the stories of all the people for whom it didn’t work. Some of the side effects sound familiar, but I’m on so many medications, I can’t tell what side effect is coming from what med. Regardless, I can still do what I have to do.
Just don’t give up. It’s a different ride – kind of like a rodeo on a mean bull – for everyone.
By Nancy Harris Bonk Moderator
First, I’m sorry to hear about your recent stroke, that must have been scary.
I am happy to hear Aimovig is reducing your migraine attack frequency. Please keep me posted on how you are doing,
Took my first 140mg dose about 3 weeks ago. No effect yet.
By Nancy Harris Bonk Moderator
Try not to lose hope – it can take a few doses before we see a reduction in migraine attack frequency and severity.
Please let me know how you make out,
anyone know where I can find out more information about amivog and if it is safe for someone who has congenital heart defect, atrial fib? Also same question for Emgality.