By Joanna Bodner Keymaster
By Joanna Bodner Keymaster
I switched to Emgality after 3 months on Aimovig with no relief and the side effects everyone is talking about……fatigue and extreme muscle pain. when I told my doctor about it, she said these side effects were now widely known amongst her and her colleages (sp?). So I took the loading dose of 240 mg (2 120mg injections) on Nov. 7, just two days ago and at this point all I can really report is this
The shots hurt like hell….just momentarily , it’s fine after the injection is complete (we have migraines, we can suck it up, right?)
About two hours after the injection I had an intense wave of sleepiness come over me (like when you taken a pain killer), it was almost bedtime so I went to bed (but regardless of what time it was I would have had to lay down). when I woke up I had no lingering feelings of fatigue and have had none since. And at this point, no reported muscle pain.
I have been in a vicious cycle since the beginning of October and it’s only been two days, so not much relief to speak of, but I certainly didn’t wake up expecting to be cured.
I will continue to post my progress, wish me luck!!!!!!
5days out and still no relief. I am easily at an 8. my eye is throbbing goes around to the base of my skull, my neck and shoulder hurt, my jaw hurts, my teeth hurt, my nose hurts in a sense that I got punched, my ear even hurts. And I get terrible hay fever symptoms so my nose is running, my eyes are tearing up, I’m sneezing. I could only find one other set of reviews for Emgality and one person said they had relief in 2 days. Ugh. Here we go again
Dana curious if you are having. Any success yet with Engality. Looking to switch after 5 months with Aimovig and no effect on daily migraines.
Unfortunately, no. However I have been in a horrible cycle since the beginning of October and my neurologist reminded me these drugs are preventative (which is weird, because the success stories “had relief within days”). I’m actually being admitted to the Thomas Jefferson Headache Clinic tomorrow for their Lidocaine Infusion to try to break the cycle in hopes that after that the Emgality will work to prevent migraines in the future. I should be there approximately 5 days and them am due for my next shot 12/7. Now I’ve been to Jefferson before and left Headache free but was unable to tolerate the preventive they gave me at that time and now less than 6 months later I’m going back. I’m hopeful, but skeptical. But I will keep you posted on my progress. I’d like to know a little about your migraine history because I think that’s important. But I say give it a whirl, what do you have to lose, really? And bonus NO side effects with the Emgality.
My husband just took his third Emgality injection and has had limited impact. His neurologist has mentioned considering the Jeffery clinic. May I ask you if they accept Medicare and health insurance, and if it took you long to be evaluated for admission? Thanks for any info you might share
Jefferson does accept insurance, including Medicare, the problem that sometimes comes into play is if you live out of state. I have put of state Medicaid and my doctor had to prove that I required care that she could not provide in order to get them to pay, and initials it was a visit by visit process. I did have the appointment while my doctor and my insurance battled it out, but getting an appointment does take a few months. You call a number get a voicemail and leave a message. That leaves a bad taste in a lot of people’s mouths because they don’t hear back right away. I left a message everyday for 3 days and got a call in the fourth day. Now, the first appointment is cash only. Yup! $485, your insurance company will not reimburse you, even though they tell you to submit your receipt. This fee is to meet with the psychologist and take a personality test that you never get the results to unless you request them in writing. HOWEVER, they do have treatments that were not available to me where I lived. I don’t know how bad your husbands migraines are or how long he has suffered, but I will say this. I have suffered for 23 years and mine are debilitating and I have not had success with everything they have tried and even had a bad experience, but I don’t, for one second, regret going. I hope that helps. I didn’t want to sugar coat, they aren’t perfect, but I’m still a patient, preparing for my next Hospitalization. Feel free to inbox me if you have more questions
Best of Luck,
Sorry for the delayed response. I hope you are doing better. We have neuro appt tomorrow and it’s time for his 4th Emgality injection. He’s had a few days of relief recently (praise God!) so we are hoping to see continued improvement. He lost his mother early December, and as you might imagine, was in a very bad cycle. We are still considering the clinic. Of course, hoping we won’t need it. I will tell you that after reading some on this forum, he has tried Kratom and that has kept some h/a manageable along with his ketamine spray. The Kratom has helped his fibromyalgia even more! I’m convinced that there is an underlying pain syndrome and all of these things are related. If only we could find the right supplement or whatever to calm those nerve endings. Cold air or sometimes shower water will instantly cause a h/a! Like the nerves are raw and exposed and when irritated, triggers the migraine. Thanks for your feedback!
Oh, Dana, so sorry you’ve been suffering so long. We got married 10 years ago today and the migraines became chronic shortly after we got married so for 10 years. He is on disability which took years to get approved. We are thank for each good day. I’m sure you are too.
I have just joined and hope this is not a violation of rules. I was diagnosed with fibromyalgia in the 80’s. In 1991 the dr filled out papers for Social Security disability for me and said it would help the pain if I lost weight. I had gained over 200 pounds on meds that did not work under his care. I joined a suppliment support group to lose weight. I lost no weight. But, in less than a week my pain was gone. I backed out a suppliment each week until my pain returned. It was the non essential amino acids that stopped the fibro pain. I have kept it in remission all these years by simply having a muscle builder protein shake for breakfast. It has to have the non essential aminos. The one I use has 26%. It has worked with my mom (91) and her sisters. Our dr is supportive and even insists it be added to her med list when she is in hospital or rehab. Prayers that you find something that works for you.
what is Kratom? i have never heard of this.
thank you for the reply.
By Melanie Merritt Moderator
Hi @lisa c santa cruz, I wanted to share this info about Kratom with you: https://migraine.com/living-migraine/what-is-kratom/. Thanks for your question! ~Melanie Merritt (Migraine.com team member)
Only thing lidocaine will do is put you to sleep you need steroids to break the cycle!
Where do they inject a steroid and how often?
They don’t inject them. I’ve been given a “Medrol Dose Pack” (4 mg) orally. It’s a short pulsed dose of steroids (I believe 6 days). I think I’ve had it 4 times and 3 out of 4 times it has helped “break the chain”. But they returned again in a few weeks.
My teeth also hurt even when I don’t have a common migraine and I’ve wondered if they were mouth migraines. You runny eye and tears sound like cluster headaches. If Emgality doesn’t have side effects and even if it doesn’t work, it’s worth a try.
Thank you for your posts.
I’ve noticed that mine are erased. Can you explain?
Is this forum funded by CGRP drug companies or related?
I had the two injections (loading dose and first month) on 11/7. When I went without a migraine a week later as a cold front moved through, I was the tiniest bit hopeful that maybe Emgality was already becoming effective. Unfortunately, I’ve had 7 early morning migraine since. My new headache specialist also Rx’d Zomig, but I’ve been reluctant to take it since I don’t know what the side effects will be and I need to be able to get to work.
I don’t know if the stabbing pains in the back of my head are side effects but they began a few days after the initial injections. Also, a true headache in the back of my head has occurred twice and that turns into a migraine that really wears me down, with rubbery legs and fatigue.
My next Emgality injection is due in several days and I will do it. The doc said it can take 2 or 3 months for it to be effective. But she said other patients were reporting positive results within weeks.
I also took my first dose on 11/7, my doctor wasn’t surprised I hadn’t gotten any relief because I was in a vicious cycle, she said we had to break the cycle first, as it was a “preventative” med which was frustrating because people were saying they had gotten immediate relief from Aimovig (which I had failed). So I did a six day inpatient stay a Jefferson Headache Clinic (which also failed) so I’m concerned the second dose due 12/7 won’t help either. I will say I have not had any side effects like you have mentioned, where as I had terrible side effects with Aimovig. Hopefully, your side effects were related to something else…like the weather maybe. I’m curious to see how you do with your second dose please update and I will do the same.
Good Luck 🍀
I had the two load dose injections of Emgality on November 6th, 2018 and yes, they do burn like the dickens for a minute. In the month since, I’ve had many migraines, but I’ve occasionally 2 days between the cessation of one and the beginning of the next one. I have spent a few less days in bed even though I had 16 migraine days. That’s actually a reduction in the number of headache days, I can have 20 or more in a month, and I sometimes have migraines that last 2 solid months, yep, that’s 60 days. I received my second dose (one injection) yesterday, Dec. 6, 2018, and will monitor and mark the calendar when I have migraine days. I’m only slightly hopeful as I’ve been disappointed every single time I’ve tried the “latest, greatest” treatment. Well, perhaps I’m more hopeful than I realize. After all, I’ve only had these headaches for 59 years (I’m 64) and trying treatments since 1993, I reckon I’ll keep on trying.
I decided not to take the second month dose of Emgality for a couple reasons: 1) This is the time of year the cold weather brings some relief for me. I won’t know if Emgality is reducing my migraine flares or if it’s just the the cold and dry air. 2) The lack of safety data is bothering me. I’ve been on PubMed reading the actual research. The study groups were not very big. The researchers from each Rx company are very excited, but this is what this independent doctor, Dr. Loder, has to say, on MedScape”
“Dr Elizabeth Loder
After the EVOLVE-2 presentation, session moderator Elizabeth Loder, MD, chief of the Division of Headache at Brigham and Women’s Hospital, Boston, Massachusetts, asked whether any serious AEs occurred.
Presenter Robert Conley, MD, from Eli Lilly and the University of Maryland School of Medicine, Baltimore, reported that there were two cardiovascular (CV) events: one in the placebo group and one in the 240-mg group “that were resolved” and one non–treatment-related seizure.
“People will be very interested in more information” about possible CV events, Dr Loder later told Medscape Medical News. “A concern with all of these antibodies is long-term safety. Tolerability looks good but safety is important,” especially based on past studies where problems cropped up down the line, she said.
“So we’ll be interested if any safety signals emerge, not just for cardiovascular events but also long-term liver toxicity and things like that.”
Still, Dr Loder applauded the study’s “modest but definite reduction” in MHDs. “The results are consistent for all of these [anti-CGRP] drugs. It’ll be interesting when they’re all available to see how they try to differentiate themselves — hopefully it will be through cost.””
https://www.medscape.com/viewarticle/881657#vp_3 (You’ll need to register to read articles)
I was in the middle of a 6 day migraine and started Emgality,the two shot starter. It has been over two weeks and I have been pain free! Once in the day and another time at night I definitely felt as though I was getting one, but it dissapaited! I am trying not to get excited,after 40 years of pain, but it has been the best two weeks I can remember! I am so afraid this feeling isn’t going to last! I am actually doing things and not dreading it. I feel excited about life. My husband and I would be able to travel! I hope the one shot next month works as well! Oh, no side effects that I know of.
So I’m due for my 3rd injection January 7th. Between my first and second injection I was admitted to Thomas Jefferson’s Headache clinic for their Lidocaine infusion…I was there 6 days and discharged as a “failed treatment” as they were unable to get my pain level under a 6.
After speaking with my local neurologist and the neurologist at Jefferson I have “decided” to continue the Emgality because I haven’t had any side effects from it, unlike the Aimovig which was horrible!
I have been prescribed Ketamine Nasal Spray (which is a compound med, so your insurance won’t pay for and I had a difficult time even finding a compound pharmacy that carried it), so that is currently being filled at $75 a pop and they are talking another hospitalization, this time for a Ketamine infusion. It leaves me wondering why I am still putting another med that doesn’t seem to be working (Emgality) in my body….but for now I want to be able to say I gave everything a fair chance. UGH!!!
Hi, um we couldn’t get my insurance to cover the shot at the time so the Ajovy rep came in and was able to cover it. I will be taking my 3rd shot in a couple of days. I have had migraines and headaches every day almost all my life and this is the first time in my life I wake up headache free. The only side effects so far seem to be a low grade fever 99.5 to 100.2 which is not fun but liveable. So far, I love the Ajovy shot!!!! It has worked wonders!
Do you think you’ll try again when the weather changes and is “no longer your friend”…so to speak?
So sorry for the delay in replying.
I’m waiting to see what happens in the spring, however, those weird stabbing pains that correlated with my loading doses got worse. On 1/4 and 2/7/2019, both arms went completely weak and I could not use them. I was also getting more stabbing pain and neck pains, not all in the same place. I have a history of spine problems and car accidents so went to a spine specialist after ruling out cardiac or neuro events.
I already knew that my cervical and thoracic spine had 18 disc bulges, stenosis, and desiccation from prior MRIs in 2013 and 2017. The spine doc didn’t need to do a new MRI because he said it it would either be no change or worse. However, he did point out cervical kyphosis and asked if I had migraines, headaches, dizziness, etc, which, of course, I do. He thinks most of my migraines are cervicogenic due to the kyphosis and nerve root stenosis. I have trouble finding a comfortable position to sleep in and get very little sleep. He Rx’d a newer muscle relaxant, tizanine, which isn’t as sedating as Flexeril. I’ve never slept better, and I only take it 2 or 3 x a week. I’m also doing neck exercises to undo the kyphosis. The stabbing pains are mostly gone. The only “migraine” I had was after a particularly physically demanding day at work. I have to be very careful about stooping and flexing my head back, like you would if you were checking for a leak under the kitchen sink or looking under the bed. I didn’t get some slight neck pain under control and it escalated into a migraine.
That migraine was an eye-opener. I took sumatriptan and it helped, but it really made me feel tired and depressed. My PCP wanted to treat me for depression last summer but I had an inkling that it was really depression. I think it was the Imitrex. I’m going to see what happens as it gets warmer. I stopped picking up the Emgality and have 3 in the fridge. I have a feeling my migraines stopped with menopause but the spinal arthritis got worse with the lower estrogen, which can be anti-inflammatory.
I hope you’re seeing better outcomes and a lot more progress by now.
Hi Dana and anyone else on Emgality.-
I have been reading your posts since yesterday. Great info thank you. I am a chronic migraineur for 25+ years. I live in the East coast. I have tried every drug cocktail known to man ( my headache Specialist is aware of all the new and old alike). I have seen 2 Neurologists and 2 well known headache specialists in my area. I have tried Botox every 12 weeks at a dose of 150 mg for 2 years. I have also tried
Botox 200mg ( using the full bottle it comes in ) every 10 or 12 weeks x 3-4 years. I also have tried pain management
Re: nerve blocks, meds under anesthesia, and other blocks in my neck area under fluoro guidance with ct scan.
Sorry so long. Nothing ever helped long term. 😏
I return to specialist yesterday for a follow-up. I was hospitalized December 24-29, 2018 with a intractable migraine. DHE IV drip helped, along with nausea meds and Toradol.
So when I returned to my headache Specialist yesterday, he declared The Aimovig I have been on for 7 doses is making my migraines worse. So now we change to Emgality. I didn’t have any major side effects on the Aimovig..I hope that holds true to Emgality. I have been getting 15-25 migraines per month in the last two months. Quite a lonely period.
Thanks for listening and I will keep up my posts of my Emgality adventures.
Gail here again! I had my two starter shots Dec.3,and now my next single dose Jan. 3rd. After 40 years of chronic migraines, I have NOT had one since the first day!! I am starting to trust and am starting to live again…with not so much fear that the shoe will drop again! It is so exciting to makes plans and actually think I will be there! The only side effect, which isn’t much, is the first week after the injection the glands right under my ears ache a little and feel tender. This from a girl who has tried everything under the sun. I will let you know how this next month goes! Especially hoping my new insurance provider that is starting will help pay as the last one ,..my cost was $200.
I’ll start with Gail….Congratulations, I’m so happy that you are getting relief, alittle jealous, but anytime one of us feels better, it’s a win!
beachbumgirl…. I’m sorry to hear you were hospitalized over the holiday (if you celebrate it). I did my 3rd shot this morning. I find the longer you leave it out the less painful it is, so I leave it out an hour instead of 30 minutes. Still no side effects. And although I feel like I’m not getting any relief, my husband pointed out that this past week has been horrendous for me, completely bedridden, oxygen going almost constantly, severe vertigo…etc… and I was coming up due on a shot, so although my migraines are still horrible I must be getting a little relief. My doctor has also put me on Ketamine nasal spray and I go back into the hospital in 2 weeks for a Ketamine Infusion. I’m also on the East Coast, are you North East? I don’t think I’m certainly not getting enough relief from the Emgality to consider it a success, but the docs want me to stay on it as it’s not causing side effects and they’re hoping in conjunction with everything else it will help. So far, not so much….but like I said before I want to give everything a fair shake. Ugh…sorry for being so long winded. Keep me posted. If your up North, I’d love to know who you’re seeing, maybe we could compare notes!
Best of Luck,
Is the Emgality working yet? Any side effects? I’m from the Northeast. Do you get any relief from the Ketamine nasal spray? When I get a migraine that is bad enough and does not respond to my at home treatments ( pr antiemetic, Toradol, and Migranal spray) , the ER doc will use ketamine.
It does help but needs to be used in a small amount, ie
50-100 ml bag or directly in the IV. They tried it in 1000 ml
This last time and it didn’t work as well. I’m hoping the Emgality helps. I hope the Ketamine helps with your next admission. When do you go in? Good luck 🍀
The rules of this forum does not allow us to share email.
Not sure how to share info? Got any ideas?
Have you tried the Ajovy? There is a saving card that will pay for your shot for 5 years. That aside, it has worked wonders for my migraines. Mine stem from food allergies and intolerances and life in general. I was able to eat an egg for the first time in years and no migraine. Amazing!!! Just a thought.
I’m getting ready to start Emgality. My headache Specialist gave me a savings card while my insurance decides if it’s going to pay for it. It covers 1 year of monthly doses. Talk to your md about one . The company supplies them. You could also call 1-833-EMGALITY to inquire on how to get one.
I hope this saves you and anyone else using this drug some money.
I am so very happy 😃 it is helping your migraines.
Emgality 240mg started last night. I have been in a 8 out of 10 migraine for 3 days. Today is day four and now it’s worse.
I hope this breaks soon.
So I took dose number 4 today and although I don’t feel like I’m seeing a difference, my husband pointed out that a week, week and a half before the next shot is due, I tank HARD!!!! So, maybe it is helping a little and for only a short amount of time, but in conjunction with my Ketamine nasalspray, my other abortive and my muscle relaxers, maybe I’m making a little progress. I’m trying to be positive, so “a little progress” is huge for me 🤗
I got Emgality. Manufacturer gave me a coupon for a year’s worth. My insurance did finally agree to pay for it, but $100 copay. First shot in November, doing February today. Down from 20+ migraines a month to 1-2 – which seem to go away easily with one imitrex. When I was 5 days late taking monthly shot I got 4 days of migraines. No side effects yet that I’m aware of. And yes, the shots hurt!! Mainly I’m suspicious – this seems to be too freaking good to be true. I’ve never had a medication work this well, except a DHE week long i.v. drip, and that was incredibly painful.
I am thinking about starting emgality next month. I am really nervous about not having the botox. I dont get 100 % relief from the botox but I have migraines in some form everyday and it keeps the pain levels down but this past 3 months have been terrible and that is why I am considering emgality. Does anyone get botox and emgality at the same time? Did anyone suffer with the shortness of breath? I already have breathing issues and that worries me. I hate trying new drugs but I am so frustrated with this head. I am new to the headache problem. I didn’t start getting migraines until 2 years ago after my mom passed away. The Doc tells me I have New Daily Persistent headaches. Anyone with that diagnosis try emgality? I have headache 24/7 just different levels of it. The headache is controlling my life. Its so frustrating.
I started Aimovig one month ago and have gone from 3-5 migraines a week to only having 2 in the last month! To me this is a miracle. I am due to take my next shot, but I am afraid to take it. About a week after my first shot I ended up in an ambulance heading to the ER with an SVT and heart rate of 209. The doctors said they didn’t think it had anything to do with the Aimovig, but I have been reading that CGRP is not just brain but in the heart as well. I know I have mitral valve prolapse and have had palpitations in the past, but never as bad as that day. Anyone have or heard of anyone having any problems with heart rate or irregular beats? Wonder if the other meds would do the same or be different.
Have you read through the Aimovig thread? Both the “Have you tried it” and the “Side effects”? While I never had any issues like that (I had others) I read many posts about people having issues with their heart rates and blood pressure. The threads are really long, but I encourage you to go through them.
Best of Luck,
I just started the Emgality with the two injections on Feb. 15. Since then, several weather fronts have gone through as well as a supermoon. (East coast, US) and I have noticed that the migraines I have experienced since the injections have been far less severe. No side effects so far. I am hopeful!
It did hurt like at first, but no residual pain at the injection site. Good advice about leaving it out of the fridge longer for less pain. I’ll try that next time.
My neurologist is sending in the pre-authorization to my insurance now, so I don’t have any info yet as to what it will cost me. I’ll keep you posted…
Txladi here. I’m a 25 year migraine sufferer, having had my first migraine after my younger daughter had colic that kept me up walking the floors for 36 hours straight. They were manageable for years.
They really began to hit me hard after my youngest was born. He will be 17 this August.
I had a pretty good year from 2017-2018, but had them begin again, as job changes, and stress increased. They started up badly again in September 2018.
I’ve been able to break them until now. I’ve had one for 4 weeks, with it ebbing and flowing with the weather, sleep, hormones, and stress. I’ve tried abortives, preventatives, Infusions, chiropractic, and Accupuncture.
My pain management dr backed up my neuro’s suggestion to try Emgality or Aimovig. I’m starting with Emgality, as the Aimovig shows to have side effects that include GI upset/constipation. I have Ulcerative Colitis, so I really don’t need any extra issues in the GI area.
Praying this helps to break this one, and prevent them moving forward. Your words have been very encouraging.
I’m not looking forward to the sting, but it is what it is.
I’ll follow up with how things go in the coming days/weeks.
Today was the second dose… so far so good. I have had far less migraine days in the past month. More stress, though… hubby tore his quad tendon and had surgery yesterday. Insurance has covered the cost, so I have no co-pay. I did leave the injector out of the fridge for a little over an hour, and the sting was far less. Will keep you posted.
Hi everyone and welcome. 🌸
I have intractable migraines. I tried Aimovig and that made my migraines worse. I have taken
Emgality for 3 months. 240 mg for 2 months ( done at my migraine specialist office to see if it would break my 9/10 migraine: it didn’t)
and this month 120mg. Yes, it does sting for 4-5 secs going in ( I just breathe nice and slow: once it’s in, I feel ok) I have had no side effects.
It just hasn’t worked 😔 it hasn’t affected my asthma.
My next step: my specialist referred me to another one about 2 hrs away . My appt. is 3/27. I will see what he has to say. Hopefully he can provide a service that no one has tried yet. ( that’s hard ) Going up very positive.
Migraines have taken so much from me, but not who I am inside and my sense of self. So hard when I deal with daily pain 7-8/10. Not taking pain meds. I have a hold on medical marijuana. Difficult to try something that is not who you are.
Hope everyone is having a 😉 day.
I’m at the end of my 2nd dose of Emgality and debating on whether or not to continue.
Though the actual “ache” of my migraines has lessened under Emgality, I’ve also gained almost 10 pounds in the same time period that I’ve been on it.
This weight gain really frightens me because my weight has never ballooned so quickly like that – even when I fractured my foot and was on daily opioid treatment while being almost fully non-mobile.
I posted a question about it a few weeks ago in the Q&A, not sure if you can search for it and also put it out on FB for discussion….it seems to be happening to A LOT of people. 14lbs. In 5months for me. Try to see if you can find it in the Q&A. Wait I have the link
I have gained 10-12 pounds too in a 10 months since going on these injections. First aimivog for 5 months and emagality. I had asked before if anyone had gained weight and got a reply back that no they hadn’t seen any side effect of that. I am so happy that I am not crazy and feel horrible for all that have gained like I have, but makes me feel so much better that I am not crazy.
Hi I have a question. When you started your shot did you stop your migraine prevention meds? I take Topamax twice a day for prevention and when I started Ajovy we didn’t stop the Topamax. My side effects from the shots are increased heart rate and fever. I’m not sure if the Topamax is the reason why I haven’t gained or my lack of appetite due to the fever but I am losing weight but I am also burning up most of the time.
I am still on trokendi, but I never lost weight from it just cognitive memory.
Good morning ☀️
At the present time, I’m hospitalized
for what my headache specialist believes is an allergic reaction to
Emgality. Since my last two – monthly injections, my baseline 6-7 /10 pain has risen to 9-10 out of 10 pain. The migraines had been coming 26/30 monthly. Now, daily.
Much nausea and vomiting despite
Rectal anti-nausea meds.
12/10 pain x the last 7 days .
My headache md wanted me admitted for IV steroids, IV dhe and
Pain control. No one could get an IV started except the special team from the ICU that usually puts in lines. Picc, midline, etc.
I now have 2 peripheral lines. If I lose them, then I need a picc Line.
I have seen #4 consult about my migraines last week. He recommended: a 2-3 week admission to Diamond Headache
Clinic once I get my insurance
Has anyone been seen there and like anyone of their team in particular??
Thanks for listening and any advice or thoughts you may have.
I’m a 54-year old male with chronic daily headaches and chronic migraine having been diagnosed originally with episodic migraine after sustaining injuries in combat during the first Gulf War. Like most of us, I’ve gone through a LONG list of failed treatments and have most recently tried Emgality. Initially I tolerated the loading doses well, but within 3 weeks I began to have great difficulty sleeping and began to have even more trouble with nausea. I do have some level of nausea frequently given that my baseline of chronic migraine is 24 – 28 days per month. After the 2nd shot, I noticed a slight INCREASE in headache intensity, no reduction in number of headache days, and additional troubling side effects of wildly fluctuating body temperature (hot flashes to suddenly being cold – in summer, in Texas), having constant cold or flu-like symptoms, having major allergic reactions to allergy triggers that “normally” don’t affect me – one included a trip to the emergency room. I also experienced an increase in overall baseline level of pain with my spine injury, increased days of allodynia and many unexplained days of pure exhaustion. After the 3rd shot and all of these side effects increasing exponentially, I discontinued taking Emgality and filed a report with the FDA to let them know that there were more side effects with this drug that injection site redness. And I’m so sorry that you had to go through what you did with having the allergic reaction to this drug, Carol. I love the little line at the end of their ads that say don’t take this drug if you’re allergic to it. How are we supposed to know if we’re allergic to it until we take it, especially since the manufacturer won’t disclose the ingredients of the drug because it’s a trade secret?? I hope you’re doing better now and that you find something that works for you.
I’m sorry to hear that Emgality didn’t work for you 😞 I know it’s extremely frustrating and hard to think about but have you considered trying Aimovig or I’ve heard many people say they had better luck with one of the others when one fails. I wish you the best of luck and please keep us posted on how you’re doing!!
By Peggy Artman Moderator
That is awesome that you have had 6 months with no migraine attack!! It sounds like you have started taking some supplements that may be working for you or against you. From what I have read, people that respond well to one of the CGRP drugs can still have headaches. You may want to check with your doctor to see if any of the supplements you take could be a migraine trigger. There may also be other triggers you have encountered. ~ Peggy (Migraine.com team)
I am a 60 Year old life long migraineur. I started Emgality in late February and on my second monthly dose. So far my experience is my number of low grade vascular headaches have decreased with the peak effect being in the middle two weeks. The efficacy seem to fall off in the latter part of the 30 days. Late in the first month, I experienced a severe debilitating attack lasting four days requiring multiple doses of sumatriptan. I consider that a rebound event. My concern in the last week is that I have developed severe lower back pain requiring narcotics and muscle relaxants. There was no triggering event for this and the pain/dysfunction is quite persistent. I believe there was also a period in March when I also had significant back pain however not as bad as this. Are other people experiencing similar side effects
By Peggy Artman Moderator
Thank you for reaching out to us and we thank you for your service. We are hearing mixed results from the CGRP medications. For some, it has amazing results. Based on my experience, your results sound great! Taking a CGRP medication doesn’t mean you will never get a headache again. But a reduction of pain or a lessor amount is better than migraine attacks everyday. A suggestion is to keep a migraine diary which will help you determine what your migraine triggers are. ~ Peggy (Migraine Team)
I started Emgality and my migraines intensified!! I had the worst pain I’ve suffered in years – for a week straight each time I got the shot it was unbearable even my rescue meds didn’t help I had to actually miss work which I pride myself in not doing often. So frustrating after all the testing and promising of relief it made me worse
I started Emgality one week ago today and will update as time goes on. Right now I’m a senior college student who has an officer position in a student chapter as well as a job, so every day lost to migraines puts me three paces behind. I’ve tried some preventatives including blood pressure medication like verapamil and more typical preventatives like topamex to no avail.
I get a wide variety of headache/migraine types, with my worst ones being vestibular/migraine with aura manifesting behind my left eye and radiating down my ear, temple, jaw, neck and shoulder. My triggers are smells, bright lights, lack of sleep, stress, and we believe certain foods and additives, so I’ve been avoiding meats with nitrites (sausages and other processed meats) and some sweeteners like aspartame.
However, nothing really seemed to help except, oddly enough, a prescription for amitriptyline, an anti depressent. The benefits slightly faded over the past year since beginning it and weren’t massive to begin with, but did at least put a dent in my migraines.
I tend to get 5 headaches a week, with any number of them beginning as or turning into migraines.
Since beginning emgality, I have had only one mild headache. I am usually very sensitive to medication side effects and have not noticed anything from the emgality other than a very minor bruising at one of the injection sites. For the time being I’m cautiously optimistic. Since I have such a wide variety of headache types and triggers, the idea of a single treatment making a significant dent in all of them seems like a fairy tale, but if I could get full control of my life back now I could graduate college and enter the workforce with much more confidence and far less to worry about. Fingers crossed!
I’m so excited that you are seeing results. My doc has told me that full effect is around month 6 but even a year later those that this is helping it is still helping more even a year later. I wish it helped more people and from my experience, I’m seeing it either helps or it doesn’t….much like most of the migraine meds out there. I wish you continued success and keep us posted!!!
I’ve been on Emgality for two weeks and still on Topomax but dr wants to eventually wean me off. So far I’ve only had one migraine, which given all the storm fronts and high humidity, is a pretty big deal. But then, out of nowhere, this last week I’ve been hit with serious nausea that comes at night and keeps me up. I haven’t eaten anything new and of course my neuro said the only side effect was site pain redness, etc. The nausea has me contemplating not doing the next dosage next month, that’s how bad it is. Anyone else deal with it? Does it get better? I really want to stick it out but I already struggle with getting enough sleep as it is with a three year old.
Topamax will be my last resort if emgality doesn’t work 🙁
I’m so sorry you’re dealing with so much nausea. I’m experiencing feeling like I have the flu for the week after my shot. I get exhausted and nauseous myself along with my kidneys hurting on and off. It’s been a rough road but it has reduced my migraines by around 90% and the ones I do get now seem to respond to treatment much better as well. Maybe try keeping saltines next to your bed a eat 2-3 before you even get out of bed? I find that helps quite a bit. Good luck to you and keep us posted!!
Hey! I’ve been struggling with chronic daily migraines for almost a year now. I basically woke up with a bad headache and it never went away. I’ve tried antidepressants and anti anxiety medication with little to no help. So my dr recommend Emgality and I’ve been on it since April 5th. I have some side effects like horrible right side pains (I’ve been checked out by drs and everything looks normal, normal ultrasound and everything) and I’ve also had shooting leg pain down both of my legs along with the right side pain and I feel very hot at times. It’s hard because I don’t know if I want to take the next dose. On a positive note haven’t had a headache since starting this medication. My dr wants to wait out my side effects and he doesn’t want me to discontinue using it. I feel lost and I feel that everyone thinks I’m a hypochondriac 🙁
Hey! So I took my 2nd dose of emgality on May 7th and it hasn’t helped at all. I read that it could take up to five days for it to fully kick in. Well today is day five and every since I’ve been taking 1-2 sumatriptans a day. I don’t understand because the first month was great. I wish I could just take the two shots a month but my dr said that’s not allowed. I found out why I had the stomach pains it was due to kidney stones, but this medication doesn’t cause them I asked! I just wish I had an answer to my headaches.
Hi, my daughter has had migraines with auras since she was 10. They run in my family – me, my brother, and his son. I am thrilled to report that, at her current age of 17 3/4, she finally got approved for a 3-month trial of Emgality! The meds she was required to try first (by her pediatric neurologist and insurance company) were ugly – like antiseizures (topomax), antidepressants (venlafaxine), Botox and blood pressure meds (thankfully her regular doc refused these). Nothing helped anyway. It’s awful that even with a strong genetic factor, my 16-17-year-old first had to try a med in several categories, each with many known potentially harmful side effects. But moving on…
Before Emgality she was getting migraines several times a week, and recently she had 4 auras in one very miserable day. She has missed a lot of class because of her disability. For example, last year she missed 42 days of 1st period. It’s been a tough road for sure.
OT: If anyone has a migraine-suffering child in public school, you can ask the school counselor to make a 504 Plan for disability accommodations at school. I didn’t know about this until midway through her Junior year, but she has it now and it has made for a tremendous improvement, both emotionally and academically.
So I chose Emgality over Aimovig (which my brother has had some good results with) because I read about Aimovig’s possible side effect of widespread body pain, which she already deals with. She took her starting dose one month ago and will take her second shot in two days.
The results so far: She has not had a single aura since taking her starting dose! Out of the whole month, she has had several mild headaches, two medium ones, and only one day that was severe. She only missed TWO partial days of school the entire month. And she has had NO side effects. This is looking to be a life-changing, life-saving medicine for my sweet girl, who has suffered so much. How blessed we are to live in this time in history!
I’ll post more updates as we go along. 🙂
Just wanted to post an update – my daughter has now been on Emgality for 4 1/2 months and has only had 2 auras in that entire time! The headaches are greatly reduced in number and severity, and it is proving to be an incredible life-changing med for her! Based on her results, her insurance has authorized lifelong preapproval, and her co-pay of $117 was automatically covered after she turned 18 (I think this is the free year from the manufacturer, but it didn’t specify.) We are so happy and thankful for this medication!
That is such great news for your daughter!!! I’m very excited to hear it’s working for her as many of us have suffered in much the same manner in school or work. Thank you for posting about the form that can be filled out for her school as I’m sure that will help so many others in their struggle!! Keep us posted and I hope things just keep getting better for her!!
I just injected my second dose. Haven’t notice improvement yet.
Has anyone experienced a “scratchy throat” or a shallow, dry cough as a side effect of Emgality?
I got a bad cold two months after I started the Emgality and had a bad cough for months. I still have a dry tickle cough. Did not connect it to Emgality. hmmmm
Emgality side effects. Been on for 2 months, getting ready for month 3. But one thing I have noticed is almost immediately I had trouble sleeping. Like I was just in a zone (not sleeping not awake). And about a month into it, I noticed that I seemed to be anxious many days. Not normal to feel that way. Lastly, I know that Aimovig has a constipating effect, but I’ve noticed a change in my bathroom habits in the opposite direction almost immediately after starting Emgality. Anyone else experience any of these three side effects?
Just took my 3rd monthly dose of Emgality. Over the past three months I’ve seen a reduction of chronic migraine. The migraines I do have seem to be less severe & respond more to imitrex, but I have had three auras since starting it. I have more energy & less brain fog. It hasn’t decreased the number of menstrual migraines I get. No side effects the first two months; this month I had an injection site reaction (it feels & looks like a massive mosquito bite).
I have been on Emgality for almost 3 months with some good success. The number of migraines/headaches have decreased substantially but I have had a significant increase in visual migraines which was somewhat rare for me prior. The visual migraine incidents have responded quickly to low dose nasal imitrex; garnering relief in as little as 20 minutes. I have also been experiencing some facial flushing during what I initially thought was just a hot flash but the experiences were different from before. I also think I have been experiencing weight gain.
69 year old guy lifelong chronic migraine sufferer. Finally have a neurologist who won’t give up. Started Emgality after a few months of Trokendi XR. Seems to be working. The weird side effects of Trokendi are going away – taste, no fizz in sparkling water, mood swings etc. headaches less frequent and less intense. Not taking Relpax nearly as frequently. Keeping my fingers crossed.
Ok, I’m 47 years old, got my first migraine at 15 that included my one and only trip to the ER, courtesy of my parents who freaked out. Yes, there is a family history with my dad being the donor of these demons. Ironically, he no longer suffers with them, while I’ve become chronic. Go figure! I’ve been seeing neurologists since 15. The first one saw me for decades, trying one triptan after another, until he got fed up with me and gave up. Next came my wonderful GP who kept me on the meds that at least gave me some mild relief. About 5 years after seeing my GP, my migraines became more frequent and more intense. At this time a tumor was discovered 2/15 and by 8/15 I had the tumor removed by an incredible neurosurgeon. Things felt better for a good year, and then BAM, migraines were back full force. Fast forward to 4/17 when I went back to that wonderful neurosurgeon and had an occipital nerve decompression. For those that don’t know, it’s removing the veins that were compressing the occipital nerve, causing severe migraine pain on the back, right side of my head. Unfortunately all that did was leave me with a scare going down my neck, and the migraine pain now located on the top of my head like an extremely tight headband that only tightens when I move. Going back to 2015, I started with a new neurologist who I adore. He tried every preventative medication on the market, nothing worked. So we stayed on the rescue medications that at least give me minimal relief and added Botox. I can’t swear that it works, but at least I get one shot in my frown line. The end of last year when the new injectables came out, we added Amovig. Still can’t say that it worked, but I’m willing to try anything, including hoping in a circle clockwise on one foot chanting “go away migraine, go away”. So June of this year we changed to Emgality. And after this incredibly long post, I’ve just started with the 2 pens and in a week I go to the one pen. Does it work? I don’t know, maybe I have less intense pain, and maybe I can
get through the early part of a day before the pain hits. But I don’t think I’ll be calling it the miracle drug as of yet. I may just stick with my chanting.
The only thing I dislike about the Emgality shot is how painful it is. A friend suggested using an ice cube to numb my leg first, which worked really well. Other than that, I haven’t had a serious migraine in months.
I was just thinking of trying that and wondered if it would help! I’ve tried a combination of ultra strength topical anesthetics and they don’t even touch it.
Well, after ice it still hurts some, but no more than an imitrex injection. I had gotten the point where I was procrastinating for days – sometimes weeks. And it really seems to be working, so that’s stupid of me. The ice cube helped a lot. My next step was going to be topical anesthetics, so good to know. I’ve also started to reduce an oral preventive, so this is real progress.
Excellent! If I find anything else that makes it burn less, I’ll let you know 🙂
Has anyone tried aimovig, emgality, and they did not work. Then try ajovy and it worked. Can’t decide what to do. Been on a break for a few months. Nothing helped actual aimovig did for 5 days and then all hell broke loose. No meds helped and migraines were horrible.
By Peggy Artman Moderator
diane51, I’m so sorry these new medications have not helped you. There are plenty of other people that have had this experience. This must be especially frustrating because other treatments have not given you much relief. Be sure to keep following up with your doctor because you probably haven’t tried everything yet. Wishing you the best. ~ Peggy (Migraine.com Team)
So no answer then to my question did anyone try aimovig, emagality, and then try ajovy and it worked for them.
By Peggy Artman Moderator
You have a good question, but I have not seen anyone share about this type of situation. My own personal experience is that I started with Aimovig and it helped with certain things but I still had a lot of migraine attacks. So my doctor switched me to Emgality and after 8 months of injections I still get migraines, but they are so much more manageable and less painful. Hopefully, some others will chime in with their experiences. ~ Peggy (Migraine.com team)
Thank u! How long did it take for emagality to work? I was on for 5 months.
By Peggy Artman Moderator
@diane51, Emgality didn’t work very well for the first 3 months. Many people give a new treatment 3 months to see if it works or not. However, I call myself a “slow responder” when it comes to Emgality. Each month I’m making a little more progress forward. My migraine attacks have been less painful. Sometimes I have a migraine attack with no pain, just other symptoms such as nausea, dizziness, etc. When I started Emgality I was determined to give it a year to decide whether it helped me or not. I don’t know much about Ajovy, but maybe your doctor can help you make a decision on that. Below I’ve attached some information on the CGRP medications.
~ Peggy (Migraine.com team)
Sorry just saw 8 months, but when did it kick in?
By Peggy Artman Moderator
For me, it didn’t just “kick in.” I committed to taking this medication for a year and then make a decision for next year. I have almost daily migraine attacks. So, first I just noticed that my pain levels lowered. Then I had more good days but this did not happen within 3 months. It was more like 5 months. But there are people that respond very quickly and some that don’t respond at all. Then there are people like me that have partial relief. I know that isn’t really an answer to your question, but I would suggest that some things take time and patience. Our disease is neurological and complicated.
~ Peggy (Migraine.com team)
Well for me I switched directly from Aimovig to Emgality, so the Emgality took until my second shot to really work because I still had so much Aimovig in my system still. I just started my 4th month on Emgality and my migraines have gone from 3-4 a week to 2-3 a month which respond better to migraine meds because I’m not rebounding from medications. So while I get kidney pain, it’s far more manageable!
I just did my third round of Emgality. I was having 3-4 migraines every week. I noticed improvement immediately and have dropped to 3-4 a month. I also was able to decrease the dose on my oral preventive, and I’m no longer dizzy. Hurts like a son of a……!! Excruciating 10 seconds, then it’s over. Takes me a couple days to work myself up to injecting again, but it’s worth it!
By Peggy Artman Moderator
@shelco05, welcome to this community forum! Thanks for sharing your experience with Emgality. I am so glad you found success with this medication. It’s true that we all are different and this medication affects everyone differently. Keep us posted! ~Peggy (Migraine.com team)
I’m so glad to hear you’re getting relief from Emgality as well! It’s true, you kind of have to psyche yourself up for the shot but once it’s done I don’t feel pain at my injection site other than maybe a bruise now and then. I tried Aimovig for a few months prior to Emgality but switched when I noticed the Aimovig was causing serious brain fog when I was at work trying to talk to people and I would just lose my thought in the middle of a sentence. I can’t say I’m happy about my kidneys acting up with Emgality but it’s tolerable for the most part. I’ll take that over 3-4 migraines a week ANY DAY! If the shot hurts that bad try leaving it out longer before you inject it. 30 minutes still kind of hurts some but leaving it out for 45 minutes or an hour before injecting makes it hurt less. Good luck and keep me posted!
I’ve been on Emgality now for a few months. Loading dose month 1 and then the 120mg dose each month after. The week after the shot I tend to feel exhausted, a little flu like feeling, and my kidneys are colicky but it has almost completely kicked my migraines to the curb. Previously I was on Sumatriptan/Imitrex shots and pain meds which only helped knock my migraines down by 50%, and tried numerous other preventative or abortive medications. Emgality has dropped my migraines down by 95%. I’m trying to be patient as the medical community doesn’t know how these meds interact with all bodily systems at this point. I’m not angry with my doctors as many are because I know this is a new drug and I took it at my own risk. I will say that as months have gone by, my symptoms have gotten somewhat better and my migraines continue to decrease. There seems to be a wide variety of symptoms people are experiencing, and to that I say keep posting everyone. The more we share our experiences, the more we will learn and the quicker we will learn it. Good luck to all of us!
Just saw an ad for emgality and thought I’d see whether you all have any of the same complaints as I saw in the aimovig side effects chat.
The commercials are on all the time and make my blood boil. Naturally no mention of the numerous side effects now being noted by patients.
I am 55 and have suffered from migraines since I was a child. I have had chronic migraines for the last 10 years. On average 8-10 headache days per month but as many as 16. I take 200 mg of topamax daily.
I started taking 140 mg/ml of aimovig last September and after 6 mos, noticed my stomach wasn’t really working as it should. It took me a few more months to make the connection between my diagnosed gastroparesis and aimovig. I lost 9 lbs in 6 weeks. Reduced motility is one of the things CGRPs do. Aimovig patients also have complained of shoulder joint pain (I have that- no other explanation for my frozen shoulder except my age) and insomnia (I also had that- it stopped when I got off aimovig).
Once I realized the cause, I discontinued use in May but I am still not back to normal.
The thing is that aimovig worked great on my migraines. I was down to 3 per month- still am. It’s just not worth it.
I write all this to let you know because my dr didn’t know about it when he prescribed aimovig to me. And my GI specialist didn’t know either- I had a lot of unnecessary tests to determine what was wrong with me before I made the connection.
I’m glad for you if these drugs work and you have no side effects you can’t live with. But you should know.
By Peggy Artman Moderator
Thank you for sharing your story on our community forum. I’m sorry you are having a hard time. At first, CGRP’s were said to not have any side effects. But now that more people are using them, doctors are finding that some patients do have side effects. My doctor told me that the side effects for their patients are being reported to the manufacturer. If you cannot tolerate the side effects of being on a CGRP, then you may want to report the side effects to your doctor or healthcare provider and look at some other options. Best ~ Peggy (Migraine.com team)
I’m jumping on your comment to let others know that gastroparesis can also be caused by amitriptyline.
I have been on Emgality more than six months with no headaches until this last month. I have experienced 4-5. I did take the shot on the 27th day instead of 30th and had added some supplements to my diet (a mix of Bs and C, etc) in the form of an energy powder without caffeine. I take my next shot on September 2nd and hope it works this time. But I am grateful for the six months of being migraine free.
I have been on Emgality 4-5 months and have much fewer migraines, but have experienced a couple of muscle/tendon injuries in that time. First was my Achilles’ tendon and now a possible tear in my rotator cuff, but a frozen shoulder at a minimum. Now I’m wondering if Emgality contributed to both. So frustrating!
By Peggy Artman Moderator
@loflin, I’m glad Emgality has given you some relief from your migraine attacks. But your other symptoms sound very frustrating. Since our bodies are so different in the way medications affect people, I think getting a professional opinion would help you a lot. ~ Peggy (Migraine.com team)
My doctor prescribed Emgality four months ago. I noticed a reduction in frequency and intensity from the first month. That’s also when my side effects began. I did not attribute them to the Emgality right away, as I had been told injection site pain and constipation were the only side effects reported. After reading through forums like this one, I now know others have been experiencing similar issues. I have had hair loss that even my hairdresser noticed. I have gained a few pounds, right in my stomach. I have periods of insomnia, and I also have a painful, itchy tingling that runs down my legs (particularly when I first get up in the mornings). I am going to report my side effects, now that I know I am not imagining them. I was really pleased with the reduction in migraines – only one triptan taken in a month!- but these side effects are problematic and have me concerned over longer term effects. I’ll be contacting my neurologist to stop this medication.
I appreciate everyone’s comments. To stavmom, I’d like to say that my daughter, too, had horrific migraines from the age of 14 on, inheriting from both sides of the family. She used her experience with the school system, dropping out of varsity cheer for her junior year, & the like to write a stellar (ok, I’m her mom, but the universities were impressed!) college admission essay.
My experience is about 40 years of nonvariant migraines. I guess that means they don’t know where they come from. I cannot take Imitrex, DHE, or Migranal. I’ve tried about every preventative there is. They obviously didn’t go away with menopause, like my grandmother & a couple of her sisters (my mom, an only child, was spared the headaches). Botox worked for maybe 7 years not over the last 18 months, I noticed it really starting to wear off faster. My only life change was getting ready to retire. My neuro was nice, informed, but passive. I switched drs & started Emagilty in June. He had a little experience with that, over Amovig. I told my husband that I was almost afraid to say it after 2 months of Emgality but it was working amazingly well! And still is!
I have no trouble with needles. Just the 1st dose that I foolishly put in each front thigh, just above my knees. Not enough fat, even tho’ I am not a thin person. I looked at their instructions, but…I’m also going to leave the next dose (next week) out of the fridge longer to see if it is a bit more comfortable.
I take Wellbutrin as a preventative & probably always will. I’m easing off of Topamax, which is a bit scary, but we’ll see. I usually jump to Excedrin, then Ultram, but of course now getting it is like seeking the holy grail. Those of us truly in need are the ones denied, for some reason.
Oh, my co-pay haha on Emgality? $1146/month. Yes per month. So without the Eli Lily savings card, I wouldn’t be on it. One of my other drs days that’s no Co-pay, it’s just simply not covered because it’s a Tier I (or whatever) new drug.
Oh, a couple of more things that my daughter & I have discovered that I have not seen here—hydrate like crazy. Drink as much water as your body can adjust to. Avoid xylitol. It’s a trigger & in Trident, Mentos, many toothpastes, & other foods, etc. I’ve also read that niacin is a trigger so I no longer take a daily vitamin. You get plenty in your so-called normal diet.
Thanks for my chance on this long post & best to you all on this journey.
Extreme success is the only way I can categorize it. I will describe my whole experience here in case any part of it can help somebody. I have suffered from migraines since the late 90s. I have tried everything from Imitrex to Botox injections for a year. The Botox injections were very effective until my insurance stop covering it. Next I discovered Rizatriptan, which was amazing. You are not supposed to take them very often so insurance only covered 14 per month. I would burn through like candy. I found that I could use GoodRx instead of insurance and the pharmacy would fill the full 30. Safeway had the best price. A few months ago my doctor recommended Emgality. I took the initial two shot loading dose in my arms and it hurt a lot. I have been giving myself injections for a couple of months now. I find straightening my leg and injecting into the middle of my thigh barely hurts at all. I have only had 2 headaches in 3 months. I finally feel like my happy self again. I have less stress and anxiety because I’m not in terrible pain all the time. I hope this helps somebody. Thank you Emgality!
I received my loading dose of Emgality September 11 (one month ago) and went from migraines 3-6 Days/week to ZERO migraines since that day.
Did I experience constipation? Yes. I knew this could happen and I went from IBS loose stools to very hard rocks in about two days. I cleaned myself out the next day and then started a nightly dose of Miralax for the next two weeks to get back to normal. After that time, i have not needed Miralax to keep me going.
I injected my dose today and will see if I will need to go back to the nightly Miralax dose for these next couple weeks.
Overall, this drug has been the biggest game changer, and I say this having tried every preventative drug possible and having Occipital Nerve Decompression surgery last July.
By Peggy Artman Moderator
@MsStacieNicole, your success with Emgality is wonderful, especially since you responded positively the first month. I hope this continues for you.
~ Peggy (Migraine.com)
An update: Emgality has been nothing short of life changing for me – 3 months of Emgality and combined with Trokendi XR and I have had six headache free weeks for the first time in memory. And this is from 2-3 a week.
I don’t know how to act!
@Frankmcfadden – I feel exactly the same way. It’s like I am waiting every day for the migraine that never comes. It’s a very surreal feeling.
Update: went to get October Emgality refill— I don’t qualify for the savings card I’ve used for 4 months! I never should have! Oh, really? I did the full disclosure on my insurance status. I’ve called all over & can find no other source of funding. So of course I’ve relapsed, but crashing my car, actually totaling it on Monday, is surely a factor. Neither I nor the hitee (I was the hittor) were injured, thankfully, just my SUV severely, & a quarter panel on her ‘Vette (yikes!).
My dr is out of town, so I await his ideas, in a week. It’s hard not to go to too much Excedrin, to be afraid of the overuse headache, & thinking about urgent care/ER visits. It’s been a long time since I was in that mode & my anger with Eli Lilly is palatable. Maybe I should just think about the whole system & what it does to all of us. That helps a little, I guess.
By Peggy Artman Moderator
It sounds like you’ve had a rough time with all this. I can understand your frustration.
Do you know why you can’t use the savings card? The bridge program should last a year.
~ Peggy (Migraine.com team)
Sorry for the delay on this response. Eli Lilly said that I didn’t qualify for the savings program, & never should have, because i have commercial drug coverage. Funny, I answered tons of questions before I signed up for their little card & told them that. Now, after 4 months, I didn’t qualify?!? I was still angry enough to spit nails. A few days later, tho’, I got what I thought was an odd call from my prescription carrier. They asked if I wanted to talk to a specialty pharmacist. I was perplexed but said sure. He asked about how I was doing on the Emgality & I said, “Hah! I can’t get it!” He had no idea what I meant. Then it turns out that rather than have my script filled at my local pharmacy, I can have it filled by the mail order pharmacy —get this —3 months for $50. I about dropped the phone.
So with about a 3-week delay, I was back on Emgality, with 2 more months’ worth in my ‘fridge. Eli Lilly may make it, but I don’t feel too kindly towards them, PR wise.
The migraines are diminished, but not as much as I hoped. Not as much as before. It may be the delay & stress of trying to get the script, wrecking my car earlier in Oct., a mold situation in our kitchen, to be resolved in the next couple of weeks…I still have faith in the Emgality because it was working before. Also I tried easing off Topamax, like my neuro dr had me doing when I 1st started on Emgality, but because the headaches were bad, I went back up to full-strength Topamax for now. When the Emgality is maybe 2 months in a row, maybe I’ll try the Topamax reduction again.
By Peggy Artman Moderator
It sounds like you have been through a lot with having access to Emgality. It was my understanding that if you have commercial insurance, it is preferred that your insurance cover the medication and the savings card is good for those that don’t have insurance coverage.
I’m so glad this has all been resolved now. I hope you have great results with Emgality.
~ Peggy (Migraine.com team)
I got my first shot 11/22, and I must say I have felt a little better, but it doesn’t say much considering my normal is 4/5 migraine free days a month. Also, I have a had a migraine since the end of October, and it hasn’t gotten rid of it, but I have had some morning where I wake up feeling clear. Next step is a neurologist if this doesn’t work and I have had many issues when I go and it ends up making me feel worse. Out of curiosity, did anyone else feel numb in the arm and leg on the side where they got the injection the day after? I got the injection in my right hip and the next day dealt with numbness in my right arm and leg. It was confusing, but it passed after the first day.
I have been on Emgality for 3 months. I have been using the migraine buddy app for 4 months. Recording my migraines on this app, it shows that I had 18 migraines in August. Since my first injections in September until today, I have had 15 migraines total. That’s less in 3 months than I was having per month without Emgality! I am very pleased with the results.
Aimovig, Emgality, & Ajovy (my experience)
The doctor switched me from Botox to Aimovig as soon as it came out. It was a huge success. It cut migraine days in half– from ~28 to 14 per month. I had much better energy overall, but the migraines were a bit more acute when I had them. I encountered two side effects when I first began taking it: acute anxiety and constipation. The constipation stopped recurring after several months. For the anxiety, I switched from a single 140 mg injection every four weeks to a 70 mg injection every two weeks. This works well for me.
After several months, the insurance company refused to pay for Aimovig unless I tried 3 months each of Emgality & Ajovy. I tried Emgality first, anticipating that it might reduce the anxiety side effect. It did, but it also had very poor efficacy. I noticed some reduction in migraines for the first week after an injection, and then little improvement. When I switched to the Ajovy, it was even worse. It had no apparent effect on my migraines, and I regressed to a very bad state of constant misery. The insurance company refused to budge on their policy.
7 year chronic migraine sufferer here. I tried Ajovy first and had to go to ER for allergic reaction. Discontinued and started Emgality. I’ve had only one mild headache each of the 6 months since!! And they usually come at the end of my dosage month. A Triptan takes care of it. I had tried many other preventives before finding Emgality. I’m very pleased but feel for those of you still suffering. I know how debilitating it is!
25+ year migraineur, that like others have tried everything, every thing, and even the hydrocodone approach. Sigh. Took my first two Emgality shots in October with good results. Migraines cut by 75% in terms of both frequency and intensity. Not quite to zero, but sigNIFicant improvement. November was not as good, and December even less so.
Still, all-in-all I’m better off, but wondering if others have had the same experience, i.e. diminishing improvement, Are two shots monthly an option?
Hello. First dose (double) of Emgality today. Have tried triptans, verapamil no help.
Injections easy to administer. Pain in right thigh was more than the one in the left thigh for some reason and it actually caused me to withdraw the plunger prior to the 2nd “snap” noise (although I think I got most of it in).
So far, 30 minutes post injection, I have to say that I do believe I am getting a bit of a headache when I didn’t have one before and feeling a little lightheaded. Nothing intolerable yet. This coming from someone who can usually tough things out and dismisses side effects.
Will add updates as I have more info.
Update later on day 1. I definitely did get a mild headache after the injections, along with mild versions of what I usually get with my migraines … dehydration, head felt unclear, weakness in legs, head pain. But no aura. Right now, I’ll take it. Will report back periodically. My migraines have been one or two clustered together every 3-4 weeks, so it may be difficult to gauge how effective Emgality is within the initial cycle.
By Susan L
Hi everyone. I haven’t posted in probably a year ago because using a screen makes my Chronic Daily Migraines worse! But I often come here to read posts. They help my sanity always! I’ve been using Botox every 3 months for several years. As advertised, it reduces my migraine free days by about 15 a month – however I’ve had months when it doesn’t do a thing. But, I will never stop getting Botox for migraine as long as I have them. I had one of my bad months a couple months ago, & seriously considered migraine surgery. My Neurologist was very upset to hear that. I was shocked that he hadn’t even heard of migraine surgery. Plus, he was extremely upset that someone would be cutting into my skin. Needless to say, I was shocked & hurt because he is considered a fabulous neurologist by all my other docs. (Like so many of you, I have multiple health issues.) What he did do for me is give me 2 shots of Emgality. Now, this is on top of my getting Botox. I felt nothing for about 2 weeks, but then it must have taken effect because it was obvious I had maybe 2 days out of 10 without a migraine. That plus my Botox that I had recently gotten made for an easier month. I still suffer with migraines ( for almost 50 years) – several docs have told me I am one of the most difficult patients they treat because my migraines are so severe. This is NOT said to diminish anyone else’s pain.) My Mom’s family suffered with horrific migraines. At least I have better options. However, I’m on Medicare. I believe my insurance may cover me for a CGRP med, but the co-pay for Aimovig last year was $362…a month. No can do! I’m seeing my neuro tomorrow, & we’ll discuss it again. He suggested Gabapentin. I need to lower the dose bc it made me too dizzy. But has anyone taken it for migraine? I went off Topiramate after 3 years due to side effects. I’m also having trouble with Maxalt’s side effects recently. I look forward to the oral CGRP meds that have just been approved as a rescue med. I do use marijuana, with success at reducing my pain often, & sometimes it gets rid of my migraine totally. My pain mgt. doc prescribed it to me for migraine & joint/allover pain. Thank you all more than I can say for sharing your experiences. My heart goes out to those of you who have pain level 7-10 migraines + those of you who have one migraine that can last up to 15 days…or more! I know exactly what that is. It helps to know my specific struggle is shared by others trying to carve out a life in spite of this horrific disease. Hugs to all of you no matter how slight or severe your disease is. Maybe we can all have a Happier New Year!
Hello all! New to this thread and had a question.
Is anyone taking Emgality that does not have any other health issues? My wife only has migraines and no other health issues and was just given Emgality to try. We are wondering if anyone who has no other health issues has experienced any side effects. She exercises regularly, eats healthy foods, meditates, etc.
I appreciate any feedback.
Having “other” health issues is really a matter of opinion and perspective. If I have a bad back or get periodic sinus infections … are those health issues? Or do you mean more diabetes, arthritis, heart disease, cancer, etc? Is there any body who actually doesn’t check off ANYTHING on those checklists that you fill out the first time in a new doctor’s office? Just trying to understand what you’re after. I get that there are a lot of people here that complain of side effects and given that there is only one that the manufacturer puts in the prescribing info, it’s hard to believe that there could be that many others if they weren’t coincident with other conditions. But OTOH, a face swelling up ONLY after Emgality injections or Constipation (which DOES seem to be a legit aftermarket side effect that wasn’t noted in clinical trials) might be legit side effects.
Now with all of this said, I had a very good initial injection(s). One of them was quite painful and one has to remember not to withdraw before hearing the click. And I definitely got a mild headache and some other vague feelings. But they were tolerable and gone by the next day. No swelling. No reaction at the infusion site. No (thankfully) constipation. Unfortunately, I did have a migraine a week or so after the injections. Only one so far, but it’s only been 12 days.