Hi: I emailed my neurologist about CGRP and he said he doubted my insurance would approve it. I am wondering if anyone else has started on CGRP therapy and if their insurance approved it. I contacted my insurance, but they said they’d have to talk to my neurologist. It’s all very cryptic.
Are you talking about the new aimovig? I asked my insurance – it was so new it wasn’t listed under Rx or specialty medicine but they said my doctor could submit a pre-approval and we could see what happened. Also, he said one of their vendors stopped by (of course) and gave him some forms that patients could get 2 months free, which, depending on the number of injections you chose, could stretch to 4 months free (it comes in 70 mL or 2×70 mL injections).
I was told the same thing in my neuro’s office as ib480g… that there are currently incentives available as they are hoping people will start trying it. My neuro is not yet prescribing it. As for insurance, they’re always turkeys when it comes to anything that needs pre-approval. I forsee another month spent on the phone every day like with my non-generic meds, and botox. I think Kerrie Smyres or one of the other regular posters put it, “You know how you have to jump through hoops with insurance? These hoops will be on fire.”
I just got back from my general practitioner’s office and she gave me my first CGRP injection of Ajovy (made by Teva). Apparently, the drug representative was there the day before dropping off samples. Not sure what my neurologist is going to think about it considering I’m getting my botox from him. Despite having had two botox injections so far, I’m still having some headaches. How long does it take for the CGRP drugs like Ajovy to start working?
KoreySmith – I suggest you read thru these forums, as there is much information, including the period of time in which those experiencing a benefit have noticed a change. Some people have reported benefits almost immediately at first dose and others doses two or three. However, I believe 2-3 months is a good indicator. For me, I am starting to feel some relief midway thru second dose, but not without side-effects. Of course, some people, like myself, go into it with intractable migraine at 25-30 days per month. Someone who has less frequency may experience different results. Note also this is for Aimovig. You may be the first here reporting on Ajovy. In that regard, what was your dosage amount and what is the frequency of injection? Good luck.
If we’re talking about Aimovig I feel fortunate that my insurance carrier has approved me. I’ve experienced debilitating site effects with other prescribed medications, so I’m cautiously hopeful about this drug. My neurologist initially recommended I consider Botox, but I’m concerned about the possible side effects given my low tolerability to medications. I’ve also experienced a similar Botox type treatment using 8-10 injections in my scalp and neck, I was miserable and my migraines returned within 24 hrs. I recognize my case is complicated, so I’ve tried a variety of treatments and hope I will find that magical something that will help me regain or improve my quality of life.
I am a 40 year migraine sufferer whose migraines went chronic about 5 years ago. I was phenomenal at ignoring the pain for decades, until the other symptoms of migraine forced me to a stop. I have tried dozens of preventatives with no luck and just to complicate things further, I am hyper sensitive to any type of mediciation. My migraine specialist wrote me a scrip and I had my first injection of Aimovig on July 3. I have had a lot of side effects but was staying hopeful because I understand that Aimovig was thought to work even better for those who are chronic. I saw my headache doctor yesterday only to find out that my insurance will not cover Aimovig for me unless I have tried and failed 2 rounds of Botox. I have not tried Botox before now simply out of fear. I have heard some horrific stories of people who were permanently damaged or injured due to Botox for migraines. I also found out that I do not qualify for the bridge program because the insurance won’t pay until I do Botox so it doesn’t matter if I get it free for a year if the insurance is still going to make me fail Botox before they will pay for it. I am completely disheartened at this point. My migraine symptoms have become so bad that I can’t drive more than 10 or 15 minutes away from my home safely. Some days I am so dizzy that I can hardly walk. My HA doctor is a wonderful, caring, also migraine suffering woman who is actually not happy to have to basically force me to do Botox when I don’t want to. I am now worrying over the fact that the insurance might not cover the Botox. I am truly at the end of my tolerance level for all of the pain and stress and frustration of dealing with an insurance company that I have never had any issues covering things up until the last 18 months. Now they are fighting me on my triptan prescriptions. Any support or positive stories of Botox would be much appreciated. I really just don’t know what to do anymore.
JenniferA, I feel for all your pain, suffering and frustration. I am awaiting word on the Aimovig, but as I noted above, have tried most everything, including Botox to no avail. The good thing I can tell you is no side effects from Botox, after probably 6 series of injections over a year plus. My neurologist said, any rare side effect such as drooping facial muscles/eyes would be temporary, as Botox is by nature, not long lasting. That is why people who get it for wrinkles, need to go back for follow ups. Good luck and keep us updated. Let me know if there is something else I can answer.
Peter – there are a number of people here (including myself as of late) who have reported side effects. There is also a separate forum here just for side-effects. Also, someone here posted a link to the discussion on drugs.com, which had almost 100 reviews – – many negative. I got no relief from first 70mg dose and thought I was starting to feel some relief from second 140mg dose, but some apparent side-effects have surfaced. Most notably, extreme dizziness with vertigo like episodes, especially when I wake up and flu like aches. Have been queasy as well and this morning, woke with a migraine and all of the aforementioned side-effects and ended up vomiting, which I have not done is a long time – – even when waking migraine was much worse. (I should note, I took imitrex injection an hour or so before vomiting). These side-effects have been reported by others. I will have the side effects checked out to rule out other causes, but it all seems pretty obvious to me that it is linked to the Aimovig. Good luck!
Insurance has approved Aimovig and I can’t wait to try it. Wish there was some feedback from other members on here about this new drug. Feeling like a guinea pig. With my chronic intractable migraines I’m willing to give this a try!
Ooo… thanks for the update, Blythe! I’m chronic intractable too, so very curious to see how you do. My dr still isn’t giving out rx, but I’m going to ask again at next appt. Hoping to try it too and will definitely post if I get to. Very curious to hear how others are doing.
I am curious to see how the Aimovig works. I am currently being treated with the Botox injections and they are not working. I have tried so many medications it’s just exhausting. They either don’t work or I have terrible side effects from them. Botox worked the first month but has not worked since. Today I received #5 and the PA feels that the first time it worked was a placebo effect. I feel he is giving me excuses as to why it hasn’t worked. He said it should start working now since this is #5. I’m not getting my hopes up. I would love to try Aimovig to see how it works.
I had my first dose almost 3 weeks ago, and I’ve only had ONE migraine, and that was during the first week! I was getting them every day or every other day. My quality of life is so much better. I’m doing the free trial but the preauth form has been sent in to my insurance.
After this 30 year battle, I am filled with joy and gratitude. I hope with all my heart that this continues, and that everyone here finds relief.
I am so happy for you, but now i am wondering if my insurance is going to put me thru the ringing to get approved for it. This just gave me a slither of hope that relief may be on the way. thanks for sharing.
I haven’t heard back from my insurance yet, and still waiting for my trial ones from Aimovig. These are all encouraging things to hear. There are no reported side effects according to the research, so this sounds really promising. Weather is my primary trigger like what was shared, so I’m really, really excited that you’ve received good results.
@rikntracy I would also love to hear how you decided whether to try the 70mL or the 140 mL.
I had filled out the “trial” paperwork on May 31 with my neurologist and who knows when they sent it in; I just got a phone call today from Aimovig and they said they will ship my Rx to deliver on Wed (someone has to be home to sign for it since it has to be refrigerated). They said I can inject it myself, even the first time.
So u felt relief the first week? It is strange I got the shot on Wednesday felt less intense migraines Thursday, Friday and Saturday. Then Sunday ( we also had torrential rain) horrible migraine. Monday also. Strange also my gums started bleeding two teeth Saturday. I am also under a lot of pressure my daughter gave birth at 30 weeks so I don’t know if this is part of the problem.
I felt different the second day, but my head was still angsty…but something had changed. I almost felt like there was a battle going on in there (although physically I didn’t have any sensations or anything.) Day 7 I got a migraine and the next day it was like everything just went quiet. I’ve only had to take Imitrex twice during the whole month. I wondered if it would start to wear off near the 30 day point but it hasn’t. I’ve been really pushing it with triggers, too, but it’s still quiet. I can think clearly. A couple of times after I did something that would normally floor me, like eat something sweet, I felt a tiny something and got rid of it with an Excedrin. That is unreal.
Second shot I got a great week and a half of no headaches. No waking up in early morning with them, great. Then horrible headaches that couldn’t be controlled. I had an extra shot at pharmacy and Dr. said to take. Nothing has happened. Still getting headaches. Can’t understand why I had one week of headache free? Anyone else have this happen to them? Diane
My headaches haven’t gotten any *worse* but I’ve definitely had periods of better days and stretches where there are headaches. I was chronic intractable to start with, so was not realistically expecting to never have a headache again. Currently having a 7 day pretty decent streak (hoping not to curse it by typing this.) Had maybe 10 days before that where I hurt every day, but the pain level was less than before Aimovig. Will see what happens after second dose.
Diane51- there are a number of people here, including myself, who have reported that since starting the Aimovig it seems that the usual rescue/abortive med was not being as effective. This includes people who seemed to have gotten a benefit from the Aimovig and others who have not.
And one thing I should mention, since I am not part of this “trend” is that I cannot take any abortives, so would not have noticed a difference either way.
Have people experiencing this side effect reported it on the website? It would be interesting to see how many others are noticing the same.
One thing I wondered (non-scientific opinion) is that since CGRP acts as a vasodilator, when you start playing around with its function, do you simultaneously decrease migraine, but also somehow make abortives (which also play with that process) less effective? I guess I wouldn’t think so right off the bat… since abortives help constrict things back down to size, but I just wonder if somewhere in that chain reaction of migraine that isn’t really understood anyway, there could be something that got changed.
Thanks for posting updates, guys! That’s a super hopeful story. I’m on day 31 of a long one, so happy stories appreciated. Botox usually does something for me for at least the first few months, but it’s been a real (insert bad word of choice) trying to get rid of this one. Would like to at least try the aimovig and see if I respond to it.
I did the last study for 18 mos went from chronic to 3 or 4 migraines days a month ( one migraine event ) less intense short lived . no side effects , I don’t tolerate many medications . In 45 years of migraines I have been on every medication for migraines, epilepsy , antidepressants , blood pressure , anti anxiety , ect . nothing has worked except CGRP injections . tried the oral tablets had to quit do to side effects .
Just found out first few times was 70 next 3 140. My migraines have been worse. Although the barometric pressure has been horrible. I also gained 7 or 8 lbs. has anyone else gained any weight? This was my last try. Has anyone tried any of the othe shots? Thanks Diane
So glad to hear of some people already getting relief and amazed to hear some insurance companies already covering. I filled out the paperwork at my neuro earlier this week to get my “introductory doses” straight from the company. I look forward to hearing more from everyone as this promising drug (and those like it) makes its way throughout the migraine community. Please keep the communications coming ! Note that IMO, it is always helpful to know how many headache days per month you have to gauge against a statement saying the drug has provided relief. I have 25+ headache days per month. Botox did nothing for me and have tried all the rest of the meds over decades. Luckily, I get relief from imitrex (tabs and injection), but tomorrow is a new day and a new headache… Good luck everybody and be well!
I just spoke to my case manager re Aimovig and wanted to pass on some encouraging information. If you send in your paperwork, the company reaches out to your insurance co. If they deny it, the co files an appeal. And as long as that appeal is ongoing, you get your med for free. Up to one year. So for me, for example, I’m doing the free trial but they already filed an appeal so if my two months run out and my insurance still is fighting it, I will continue to get it free until the appeal is worked out. It’s called the Bridge Program. So don’t lack of insurance stop you from going for it!
I’m still waiting, my Neurologist has assured me that my insurance company WILL deny it, at which time she will resubmit. My take on this is, this is the first migraine med designed from the ground up for migraines, not some other drug that has been re-purposed. That said, if you have migraines your insurance company should be required to cover it! I’m really sick of these pencil pushers just trying to keep their own profits high at patient expense. My Neurologist prescribed sprix for me and my insurance denied it, sending a list of 4 drugs I had to try first. What was the first drug on the list? Ibuprofen….. after having chronic migraines for over 10 years, and having a migraine EVERY day….. don’t insult me like that. I’ve probably taken enough ibuprofen to medicate a small town.
Got my prescription for Aimovig on July 18th. The Pharmacist said I was the first person at their location to get it. I went home and let it come to room temperature for about 1/2 hour and then injected it into my thigh. I was surprised, being someone who has done Imitrex injections and the needle-free injections… the Aimovig was totally painless! Unfortunately I stayed home from work because I had a migraine. By the way, the 70mg shot retails in my area for $690.99 and after insurance was $625.00, but with the drug manufacturers discount card I paid only $5.00!!!!
Aimovig update: Bad weather is a MAJOR trigger for my migraines. We had thunderstorms last night and rain today and I did not get a migraine. Normally I would have had a migraine before the bad weather set in, but this time I didn’t even know about the storm until looking outside. I injected 70mg of Aimovig on July 18th.
Thank you for that information about United Healthcare (Medicare)! I’m also with them and was wondering about the chances of them covering CGRP therapy for my migraines. Of course, the CGRP isn’t an option at this point since I’m currently on Botox injections for my migraines. So far, I’ve had two series of botox injections and they appear to be working, except when my migraine triggers get “tripped”. Like today, I overslept and woke up with a migraine. Completely avoidable if I would’ve gotten out of bed on time. Do CGRP drugs only come in an injection or are they available in pill form? I’m already on other injectable meds, so needles don’t bother me, but I was just curious.
Korey, did your neurologist tell you that you’re not allowed to have Aimovig while on Botox? People have mentioned some doctors saying that, but others on here have reported being on both (including me.) Unless your doctor is specifically refusing to allow it, it isn’t currently contraindicated by Amgen.
I haven’t been told either way by my neurologist yet. I haven’t had a chance to discuss CGRP therapy with my new neurologist yet and since I’m only on my second series of botox injections, I figured I would wait until after my third or fourth injection before asking about the CGRP therapy. Hopefully, things get better between now and then.
I had my first Aimovig 70 mg 27 days ago. It did lessen the severity and frequency of my chronic migraines. Within the last week or so, I have been getting bad migraines again starting 3-4 pm most days. If I take Toradol, it works for a while then the pain returns. That is all I usually take. I also sleep in a dark room with an ice pack near my left eye.
I spoke to my headache specialist last night. He said I will bump up to 140 mg (70 mg x 2 doses) when I come in on Thursday August 23 for my injections.
That will allow more of the med to stay in my body until I
Get shots #3. I haven’t had any other side effects.
Other than it being harder to control any migraines now
If I get them.
I hope everyone is doing well and good luck with the Aimovig. I wish you “migraine free” days.
I’m having the same problem: harder to control my migraines when I get them. I never made the connection to the Aimovig, but my rescue meds don’t break my migraines anymore, just reduce the pain. I’m also bumping up to 140mg. For my third injection next Friday. Good luck and keep us posted!
I just spoke to Aimovig customer care to, among other things, see about bumping my second injection up to 140mg dose. Told me my neuro originally completed form for 70mg dose and would need to “edit” page two of form to change to 140mg and fax to them. Would also need to call the mail order pharmacy the use and advise them since script for 70mg already in their hands. Passed on info to my neuro and waiting for confirmation.
As mentioned, I have not seen any benefit in the first two weeks from the initial 70mg dose and like others, have had some real bad days where my abortive (imitrex injection and tablet) has not done the trick at the previously administered dosage. It has taken double and even triple the dosage to abort. Could be coincidence, but seems generally timed to the start of the Amovig.
Edkrauss, sorry to hear you’re having same problem I am with rescue meds. How much oral imitrex do you need to get relief? I used to need two 50 mg. Now that does nothing. So I wait in anguish for about. 6 hours and then take a third and finally get relief. I thought you were only supposed to take two a day, but the pain has been so unbearable I didn’t care if I was breaking the “rules.”
kblange, I have been prescribed the 100mg tab for years and often could break in half to get relief for the rest of the day and on rare occasion the following day. If not, I will take the other half. About two years ago, I starting using the injectable in addition and insurance pays for both. As I often wake with a migraine or am woken prematurely with one, the tab doesn’t provide relief or at least not quick enough for me to function. As you state, for the last couple of weeks, I have had to take an injection upon waking, half a pill later in the day and sometimes even another half or another injection later in the evening! And yes have tried botox for a while and many many preventatives to no avail. In the last year, I started getting occipital nerve block/trigger point injections and can sometimes get a day or two relief from those. My first try gave me a week, which I had not experienced in many years !
I just took my third injection. First two were 70 mg. Today took 140mg. Within 5 minutes I felt like someone drugged me. Extremely sedated, fatigued. Trouble getting words out. It slowly lifted. Now I feel a bit high. Not safe yet to drive but getting there. Anyone else feel odd the day of injection?
My insurance company only covers about $35.00 (which is laughable) of the $700.00 price tag (for 70mg dose), but I have the discount card from the drug manufacturer, so I pay $5.00.
I administered the 70mg dose the first month and it worked great! I felt better than I’ve felt in years! But, it only lasted about half the month. Come to find out, I was supposed to get the 140mg dose, but Walgreens only gave me one dose (and still have not given the other dose, which I’m afraid I won’t get now). Then Walgreens said that I would have to find something else because they couldn’t get Aimovig, then they called my Neurologist and cancelled my prescription. My Neurologist works at Froedtert Hospital and they have their own pharmacy, so now they mail the 140mg dose to me every month. On top of that the manufacturer has sent me 2 doses of Aimovig for free (4 70mg shots).
So, I received the 140mg dose and administered that…. the results were not as good as taking the 70mg’s. It has been really slow to take affect, I’m still getting migraines – not as bad mind you. But I don’t feel as good as I did when I just took the 70mg dose.
I’m going to talk to my Neurologist and ask if maybe I can try administering one shot at the beginning of the month and then follow up with the other dose half way through the month to see if I have better results like that.
As I write this today I am waiting for the delivery of my first dose of Aimovig straight from the manufacturer. I am enrolled through my Neurologist. It seems that because my doctor is part of a large Neurology group located in northern N.J., they were selected by the drug company to choose patients for trials. I don’t know which dose I will be getting, but my doctor, who I have been seeing over 20 years will make that choice. I have been on so many different types of medications through her, including Botox since last November. I am praying that this helps because I am out of options after this. I am very excited to try this BUT also kind of scared if it doesn’t work. I will let my results be known. I don’t know how long it takes to know for sure if it is helping, but I am waiting for an answer from the medication answer line.
Someone from Amgen called(!) to tell me I needed to enroll in it as well, which I did. Who knows if signing up actually does anything. I still can’t get a straight answer about getting into the bridge program and getting my third dose.
In good news, Aimovig is working great! I’m on 140 mg, have had two doses, and am having milder intermittent headaches, after spending all summer having intractable weeks-long migraines. I still am terrible light sensitive, so it’s not taken things away completely, but oh to be doing so much better while inside!
It does work. I enrolled (it took 2 minutes), printed the online card. Same day went to my pharmacy to pick up my dose and they said they’re still waiting on insurance to ok it. I then gave them the printed card and it was covered. In fact, they said the first one was at no charge. And confirmed the next 11 doses would only be $5
So after your insurance denied it (because mine says they won’t cover it at all), with the card, the pharmacy said “sure no problem you can have it for $5. ??
I printed the card last week. That part was easy. Just trying to figure out if all we have to do is print a card and suddenly anyone who prints a card can magically have 12 doses for $5 each (um, yes please), why the hassle of having the Bridge Program and McKessen?
I finally received my first complimentary dose (70 ml) of Aimovig on the morning of Sept. 11, and used it (easily) that evening. Here it is 12 days later and first, I have had no side effects and second, I am kind of a mix between feeling good and then not so good, with only 1 short lived bad migraine. I am definitely going to get my next and possibly final complimentary dose. After that my Neuro will prescribe it and I pray my Ins. co. will pay most of it. I am determined to keep it going as long as my doctor feels it will help. I am disappointed that I did NOT get a good response right away but I will always remain hopeful. YOU CAN NEVER LOSE HOPE. Just as a reminder, I am a 42 year migraine sufferer, so if I can still have hope, maybe some others can too. One of my other doctors told me that there are also other similar drugs on the pipeline with maybe a little different chemical makeups. (: (: (:
Cappucino, you might also give it a little more time. I feel SO much better right now. But it took a little while for it to kick in. My doctor said not to expect anything to happen for 8 days. The first two weeks, I had felt not particularly great, and was discouraged. After a month, I could look at my data and see overall, something was changing. Second dose made me feel even better than the first.
New update on insurance: I received a letter informing me that my insurance will not pay for Aimovig as long as I am also getting Botox. Apparently I will be forced to choose one or the other (presumably because they do not want to pay for both.) This isn’t really a choice, as I was declining on Botox alone, and showed immediately improvement on Aimovig, but I do feel I do better with both. Oh well. Insurance sucks.
I Tried Ajovy for the first time today and so far so good. I was having a Migrain headache in the morning and purposely waited for my Ajovy to arrive (my pharmacist has to order, Normally I would take 100mg summatriptan). As soon as I receive the injection at 2pm and my headache did not come on at work. It’s now midnight and I feel like a have some sort of a ringing ear combo super mild headache but it’s bearable . I am thinking not to take my Summatriptan to see if this Ajovy is working on me or not. My Aetna insurance paid for Med without a prior authorization (my doctor was surprised). With the coupon from manufacturer I ended up paying 20 dollars.
I am worried about long term side effects as Calcitonin gene receptor peptides are in you gut, heart and pituitary glands (which is the mother of all glands) . I also have an ulcer problem and hypothyroidism. Anyone have thoughts regarding long term side effect?