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

View Comments (13)
  • DAA70
    3 days 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
    5 days 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
    3 days 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
    1 week 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
    3 days 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
    3 weeks 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
    3 days 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
    3 weeks 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
    4 weeks 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
    4 weeks ago

    I have been using Aimovig for 3 months with grate results

  • sherose
    4 weeks 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
    4 weeks 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
    4 weeks 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.

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