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Aimovig: Community Feedback & Experiences

Aimovig: Community Feedback & Experiences

Many of our Migraine.com members that have tried Aimovig have been willing to share their personal experiences including side effects in our forum page dedicated to this topic. You can read all of these responses that appear below in more detail here and can join in on this topic by sharing your feedback as well. Additionally, if you’d like to read more member feedback about the other CGRP treatments (Ajovy & Emgality) you can do so by viewing our main CGRP forum page here.

Here is a summary of some of the responses from those that have tried Aimovig.

So far experiencing some improvement

“I’ve only had one month of injections but if things continue going the same way this will change my life. It took about 5-6 days for my everyday migraine to subside after the first dose.”

“My neurologist had me stop the Botox and the Topamax, and I did – it turns out the second Aimovig injection still worked great but I wasn’t completely headache free. So I got the Botox again and a week later after it kicked in, I’m good. If I do get another headache he said he might start me on Topamax again. I am always concerned starting new drugs but this really has been amazing for me. Zero side effects and I’m the queen of side effects so big thumbs up from me.”

“This drug seems to be a miracle. Now getting it is not easy but you CAN get it. You need a neurologist headache specialist preferably to prescribe it. They can get you started with the two month free trial. (Getting the second dose has been dang near impossible- there must be a shortage). Go to the Aimovig website and sign up for the copay card. Find a pharmacy that can order it and even if your insurance doesn’t offer any hope of coverage (mine does not) use the “bridge to insurance” option to get 12 months free. It is a bear to get it but so worth it!!!”

“I have daily severe intractable migraines. My first two Aimovig injections were 70mg. While the severity of my migraines decreased, I never had even one migraine-free day. So for my third injection we bumped up to 140mg. No change. I was ready to throw in the towel but my doctor urged me to give it one more try and boy am I glad he did! Had the injection last Friday and have been migraine-free ever since, which is nothing short of a miracle.”

“I think the drug might actually be working. My pain level has been 0-5 with most leaning towards low end. Prior to Aimovig it was 8-19 every damn day. Hope I didn’t just jinx myself!!”

“12 days since two shots of Aimovig and I’ve only gotten 2 migraines! That’s great for me. I feel like migraines are trying to start, but then they never do.”

“I had a bad migraine with the 70 mg. No side effects. Happier with the higher dose. Time will Tell.”

“I am on month 2 of Aimovig. The first month I only saw a small improvement in my daily migraines. This month I have had much better results!! I can’t say I have been headache free yet (I have had a daily headache for over 2 years) But I can say that I am feeling much better than I have in 2 years!”

“This is the first preventive drug that has ever worked for me. Definitely give it 30 days if not 60, if you can.”

 “I’m almost 3 months in with Aimovig and have gone from 12-15 migraines a month to zero (3 if you count a few mild instances that cleared within 12 hours). I didn’t think Botox was helping much before Aimovig, and suspect dropping the Botox would have little effect, but another part of me wants to change nothing while I’m getting such relief.”

So far little to no change

“I have had NDPH/ chronic intractable migraine for 5.5 years. I had 2 of the 70mg injections as part of the trial, and just had my third dose 4 days ago which was the first time had 140mg. Still zero benefit. If this doesn’t work, the next might, or a different anti-CGRP med might work.”

“I’m two weeks past my third 140 mg dose and no changes to my chronic migraines symptoms, which are daily. I recognize the clinic research identified that improvements may not be experienced until after the fourth dose, but my side effects are escalating with each dose.”

“I just had my 2nd treatment of Aimovig a few weeks ago and absolutely no change. I’m having them worse than ever! I am also itching terribly. I mentioned this to my neurologist and she said even though it’s listed as a lesser known side effect none were reported in trials so it’s not the Aimovig.”

“I’m officially done with Aimovig and boy do I regret taking that last injection! I’m daily severe intractable so I’m pretty damn desperate….I’m on week 6 of going off and still triptans don’t work at all. Plus I’m back to 14 hour migraines every day.”

“I have had three doses with no improvement (plus side effects) and am strongly considering not continuing with fourth dose.”

“The lst does of 70 did not do anything. Two weeks ago I had the 2nd injection and then a few days after that had yet another round of Botox as my Neurologist thought the double punch might help…nope, nothing.”

“It’s only been two months, but I think I’m one of the people it doesn’t work for, at least not at the 70mg dose. I’ve had worse migraine pain since starting it than usual, and no noticeable reduction in migraine days.”

“I only tried one injection of Aimovig And it gave me awful side effects…I also have fibromyalgia but the injection made it 10 times worse on a daily level. Plus I experienced the constipation which I can’t afford…. even with stool softeners. My doctor decided that it was not for me..”

“I was using Botox and getting relief for about 3 months after the injection, then the migraines would reappear. I switched to Aimovig in July. It worked well until October. Now the migraines are back.”

Side effects from Aimovig

“I have experienced mild stomach queasiness, dizziness and even vertigo like symptoms, as well as extreme lethargy – beyond what is “normal” for me as someone with chronic illness.”

“I am having terrible side effects since my first shot a few days ago. Dizziness, nausea, insomnia, and worst of all the worst migraines of my life everyday.”

“I haven’t noticed any side effects from Aimovig and seems to be the first solution in my 30 years of migraines. Weather (pressure) change is my trigger.”

“I too am experiencing muscle aches and profound fatigue.”

“I have had no side effects after 2 weeks.”

“I have always had muscle pain (neck, shoulder, traps) associated with my migraines, however since starting the Aimovig 2 months ago my muscle pain has been unbearable.”

“I’ve had three injections. The only thing I’ve noticed – and I’m not sure if it’s a coincidence or side effect – my joints are stiff and ache all over.”

“Approximately 3 minutes following the 1st injection of Aimovig (in the my right thigh), my lips from midline to the right went numb and tingled as did my right shoulder.”

“My body had a severe response to Aimovig. My Immune system recognized the drug as a poison, and made antibodies to destroy the drug.”

“The first 24 hours I felt light headed from time to time. Has not recurred since. My headaches have gone from 15-20 headache days/month to 5-6 days/month. I’m on the 70mg dose.”

“Have not been able to sleep at all since the injection and constipation as well.”

“My triptans stopped working since taking the Aimovig.”

Let’s keep the conversation going

How about you, have you tried Aimovig? If so, we’d love to hear your feedback & experience in the comments below or in our forum page here.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • elisa1
    3 months ago

    I have had 3 doses of Aimovig and amazing results for migraine cure. I have tried several med’s including Botox injections. Botox gave me no results and the other med’s I tried had such adverse side effect and still didn’t manage the migraines. Unfortunately, I am realizing that I have been experiencing increased hair loss over the past 3 months. I have lost approximately 1/3 of my hair. It’s very disturbing to be losing clumps of hair on a daily basis. I also experienced constipation, but that is easily remedied with daily Miralax. Most importantly, I don’t want to go off Aimovig. It has given me my life back. Could I take something in conjunction with the Aimovig to promote hair growth or keep it from falling out???

  • Joanna Bodner moderator
    3 months ago

    Hi there @elisa1, Well I am SO thrilled to hear what great success you have had on Aimovig! However…saddened to read what difficult side effects you have been managing. It does not sound like you are alone in experiencing this. We are of course not healthcare experts and cannot provide medical advice, but maybe a hair supplement or hair therapy system may help the hair loss. Of course discuss with your doctor, but maybe a Biotin supplement, Nioxin hair care, Rogaine. Just a thought. Good luck & keep us posted.

  • kissmygumbo
    4 months ago

    My friends and family joke that I should be a spokesperson for Aimovig. It has changed my life! I had one sample early on and was unable to get the second sample consecutively. I had some relief about 10-14 days in that first month. When I was able to get it approved by my insurance – I started it late August and noticed improvement in about 2 weeks again. I went from 1-2 migraines a day on average to hardly any at all. By the middle of the third month – I had a new lease on life!

    I continue to get Botox and in November began weaning off Trokendi xr as that made me too thin and was starting to have lots of negative side effects.

    It is now February and I may get about 5 minor headaches a month at most. The majority coincide towards the last week before my next treatment.

    By the way, I also have a severe latex allergy and this has not bothered me in any way. I’m so thrilled my doctor researched it and felt I would still be a good candidate.

    I’m sorry to hear this wasn’t the miracle drug for so many of you and that others can’t get insurance to cover it.

    I feel very blessed and now that I’m migraine free almost all the time and have gained weight, I have so much more energy and am back to exercising regularly.

    Since my migraines increase about 5 days before the next shot, I’m curious if I should ask for the next dosage up (which insurance probably won’t cover) or if 28 days is really the magic number and not 23.

  • elisa1
    3 months ago

    Also, I believe the disease doesn’t affect the cost. It doesn’t with my insurance or with the coupon either. I hope this is the same for you!

  • elisa1
    3 months ago

    The dose, not disease. Oops

  • elisa1
    3 months ago

    I too had my migraines return about 10 days before my next 70 mg injection. My neurologist has agreed to up the dose to 140 at my request. I’ll let you know if it gets me through the entire month. Even so, since starting Aimovig, when I do have a migraine they are easily managed with a Maxalt or the generic brand. It truly feels miraculous!

  • DAA70
    4 months ago

    I’m on my second month *“in a row” of Aimovig & I’ve only had two full blown migraines since my injection Friday. I was able to get them to stop with sumitryptan or fioricet which is a massive improvement over the last 3 weeks. I still have some pain around my eye socket, where my migraines occur, as well as fatigue and the nausea. I’ve noticed anxiety and depression also, but I was about to lose my mind last week from having migraines almost nonstop.

    I live in the Houston area and I think the constant drops in barometric pressure from The Gulf Coast cause me to have more migraines.

    I hope I am able to continue to get this medication, but I hope this nausea stops. Anything that increases seratonin levels seems to also be a migraine trigger for me so I can’t take ondansetron (generic Zofran) for fear of triggering a massive migraine attack.

    *FYI- apparently it can take at least six weeks to kick in, so after a month, I thought it didn’t work for me & didn’t get the second injection. When I had two weeks of relief, I thought it was from wearing a bite guard to stop me from clenching my teeth in my sleep. Then the migraines returned and the Dr.’s staff confirmed the rep said it can take that long to start working so I started over ASAP & am “technically” on my third injection, just on my second month in a row, so I only had about 4 week delay this time.

  • Sassygirl42
    4 months ago

    This is my third month of 70 ml of Aimovig. It is a miracle for me. I have had some hives around the injection site but taking Benadryl clears it up within a few hours. I can’t believe how well it works! I’ve had chronic migraine for 25 years. This was really my last hope as nothing else has worked. I went from 15-20 migraines per month to 1-2 that are low intensity and dissipate within an hour after taking a 100 mg Imitrex tablet. I am still getting used to not being in constant pain. But I am so grateful it is working. I hope others are having positive results.

  • DAA70
    4 months ago

    Amen! I so hope they keep working for you! I’m just having some side effects that I mention above, but I was getting to where I couldn’t even hardly get a few hrs of relief between massive migraines!

  • jamiezac
    4 months ago

    I just took my first dose of 140 ml of Aimovig on 12-31-18, and I’m having a strange side-effect that is not discussed on any of the paperwork supplied with my auto-injectors. I’ve read on this site that a few others are also experiencing the exact same thing. I seriously cannot stay awake. I’m constantly fatigued to point that all I want to do is sleep. I suffer from both migraines and chronic cluster headaches, and my neurologist wanted me to try Aimovig due its purported success with so many migraine sufferers. I’m not sure what’s worse — this extreme fatigue and dizziness or the constant head pain! Under either scenario, I still can’t do anything. I’m afraid to drive anywhere as I might fall asleep while driving. Now I think I know how someone with Narcolepsy feels. Does anyone have any advice? Thanks!

  • DAA70
    4 months ago

    If this does not abate, there definitely are medications that can be prescribed to keep you awake during your “normal” hours. Modafinil, armodafinil, nuvigil, provigil and meds like aderral. Discuss your options with your doctor. I’m having that mono kind of fatigue myself. Hope it improves for you.

  • JDW30324
    5 months ago

    I have on average three migraines per week. These last all day. Does anyone have any positive experience with the Amgen Safety Network Foundation? I took the first two injections of Aimovig which were free. First month, I saw no difference. Second month I believe there was a slight decrease in number if migraines. So I was a little hopeful and want to continue. Aimovig talks a good game about being so concerned that there are patients out there who could benefit from Aimovig but can’t afford it. Therefore, they supposedly have this procedure to provide Aimovig at a reduced cost or even free depending on your circumstances. I’ve been struggling with Amgen Safety Network Foundation for over a month, trying to get them the paperwork they need from my doctor. They said they never received it – my doctor’s office assures me they have. Talked with the Amgen Safety Network Foundation again today and rep didn’t seem to understand what I was talking about and had no records of my previous calls. He suggested I call Aimovig directly. So I realized today, the Amgen Safety Network Foundation not real. They intend to make patients so frustrated that they give up.

  • DAA70
    4 months ago

    Oh, no!! I hope it is for real, otherwise I won’t be able to get it either. I filled out all of the form I could and the assistant said she would finish it and send it in. I haven’t heard from the manufacturer either and it’s been a month. I can’t get anyone in the doc.’s office to transfer me to the person I need to ask about it ever either. I hope it is legit. I hope this law against people on Medicare/disability or Medicaid being able to us manufacturers’ coupons is repealed soon too. Good luck!

  • Snowbunny
    5 months ago

    I have been on Aimovig for 3 months. 1st injection on Sept. 17, 2018. It was a true miracle. I went from having 3 to 6 migraines a week for several years, to NONE!!!!! Aimovig changed my life in many positive ways, however, after my 2nd injection, I experienced a scary, horrible side effect. I went to get out of my recliner (2 nights after the 2nd injection) and I could not move. I finally got up out the chair, however I collapsed on the floor screaming in excruciating pain. I had SEVERE muscle cramps in BOTH LEGS and FEET at the same time. I could not move from my hips down to my toes. The episode lasted for 5 minutes. After the episode, i could not walk for the remainder of the night as it truly felt like I was carrying “bowling balls” in my thighs, calves, and feet. Since this night, I have experienced DAILY muscle spasms in both legs and feet, and there are many days I can’t use my left leg, I have to limp to move the left leg. Even though i am still suffering with these debilitating side effects from Aimovig, I still rate it a 9, simply because I have only had 3 migraines in 3 months. A true miracle!! My doctor has just taken me off Aimovig and switched me to Emgality. However, it will take months for the Aimovig to clear my system. I hope I get full use of my legs back. Prior to this I was a avid walker, 5 miles a day, ice skater, snow skier…a very active person. I hope to be able to ski again but I can’t even attempt to do so with the daily leg pain I experience.

  • PEINURSE
    5 months ago

    I had my first dose December 5th of 140 MG. I am not sure if this is a side effect from it, however, I have extreme bloating and gas to the point that I can hardly sleep due to the chest pain from pressure build up. I also have hip and knee pain which I never had before. I have chronic intractable migraine and they have subsided minimally which is a help. However I am not sure I can continue if these side effects persist.

  • sherose
    5 months ago

    I have been using Aimovig for 3 months with grate results

  • sherose
    5 months ago

    I have had 3 months on Aimovig 70 mg migraines have decreased by 50% When l get one it starts as a10 and rapidly decreased. My rescue medication can not be used everyday. I feel as if Aimovig is awesome. I haven’t had any side effects. I have my life back

  • Jodi
    5 months ago

    In July I had 21 migraine days. I took my first dose of Aimovig on July 23rd. In August I had 8 migraine days. Aimovig continues to cut my migraine days by almost 2/3. I have since gotten off Topomax, but my neurologist wants me to try some new medications as the number of migraines increased with the cessation of Topomax. I now take 140 mg of Aimovig and the only side effect is constipation.

  • Sandra123
    5 months ago

    I have had 2 months of the 70mg and 2 months of the 140mg. I am noticing a very slight difference in the severity but not the number of headaches. I still get all the other symptoms (nausea, seeing stars, weakness on one side, using wrong words, etc). I will take whatever relief I can get and will hope it will offer more relief as I continue to use it. I am noticing a lot more joint pain and having a lot of nerve pain in my feet and hands (enough to wake me at night). This was present before but has gotten worse…not sure if it is because of the injections or not. During the first few days after the injection, I want to sleep more than usual and feel like I am starting to get the flu. I can deal with that if it is going to help with the migraines.

  • Delaney1120
    3 months ago

    I am 46 years old, I have had migraines since I was 7 years old. I have daily migraines and intractable migraines every 3-4 days.

    I have always been willing to try anything to help. I was over the moon excited about Aimovig. Within days of taking it, I was living in a constant state of intractable migraines, #10. Not only did I see my migraines increasing in numbers, the intensity increase severely.
    Aimovig does not list a side effect of increase migraines or increased intensity so I had yet put the two and two together. The day after my second shot, I went back and review my migraine calendars. Nothing else has changed except for the Aimovig. I’ve had migraines for 39 years and the intensity of these migraines had me curled up in fetal position begging God for just a few minutes of relief. I knew the emergency room was not an option. 1) they have started treating chronic pain patients like drug addicts. And 2) this medicine was in my system and with the shelf life of 28 days there was nothing even an ER doctor could have done. My abortive medicine (Fioricet) would bring the migraines down to manageable. But as soon as it wore off the terrible migraine was back due to the abortive not being able to completely abort that migraine. I am extremely careful not to take pain reliever of any kind on a daily basis do to rebound headaches. But the migraines I had due to the Aimovig, a rebound headache would have been child’s play.

    I called Aimovig and I was told that was not listed as part of their side effects. So I decided to Google Aimovig side effects. There I found over and over women experiencing the same side effect as I was having, more frequent migraines along with increased intensity.

    I took my first dose the beginning of November, second dose in December. I spent Thanksgiving, my birthday, my daughter’s birthday, and sadly Christmas in bed. I’m very blessed to have an amazing supportive husband that didn’t mind at all eating Thanksgiving and Christmas dinner in bed with me. This was our first Christmas alone since our children were born and we had planned to spend it on the beach.

    This medicine can work different for everyone. I do not regret trying it. And I would never suggest anyone else not try it at least once. 39 years of daily migraines, anything is worth trying just one time.

    I truly hope this medication helps everyone out there. And for those of you that are having the same side effect as me, please know it is a real side effect, and it’s happening to a lot of us. It’s not in “your head”

    Angie

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