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Aimovig Fears

“I am scared to try it and I’m scared to not try it.” That’s what I’ve told everyone who has asked me if I’m excited to try Aimovig. As I prepare for my first injection in a few hours, I continue to be afraid while simultaneously ready to try it.

Aimovig might not work for me

Most people assume I’m afraid that Aimovig won’t provide me with noticeable relief. Unexpectedly, that’s not what I’m afraid of. I have a reasonably effective (though absurdly expensive and finicky) treatment in the gammaCore. It’s far from perfect and I’d like something more predictable, but if Aimovig fails, I won’t crash to the ground without a safety net. And Aimovig is the first of four CGRP-inhibitors that will be available in the next couple years. If it doesn’t work for me, another one might. So, I’m pretty comfortable with the possibility it won’t help me. And yet I’m still afraid.

I’m scared to try Aimovig because of potential side effects

I’m mostly afraid of side effects. Even though the reported side effects are minimal—constipation is the biggest issue and a small number of study participants reported muscle cramping—I’m still scared of encountering side effects that didn’t show up in the clinical trials. In unscientific online discussions, patients are reporting an increase in migraine severity or frequency or fatigue following the injections. While these could easily be coincidence and not due to the medication, the thought of more fatigue chills me. It’s my most disabling symptom right now, far worse than the pain, so potentially signing up for more is distressing. And I’ve seen a friend in a terrible migraine spell following the injections. This could be coincidence, but maybe not.

All that said, I’m actually not all that scared of the short-term side effects. After all, if they’re unbearable, I can stop taking the drug and the side effects will fade away. What I’m most worried about are the long-term effects. What adverse effects might show up after large numbers of people have been on Aimovig for 10 years? This question is currently unanswerable, which is the part that nags at me. [I brought up these concerns with my headache specialist after I drafted this article. He told me that with the way the drug works, the short-term response would probably have already indicated any potential long-term issues and that some patients have been on the drug for five years without adverse effects. He did point out that trial participants are otherwise healthy, so it will take longer-term use from a broader population to truly know if any other adverse effects will show up.]

Yet I’m scared to not try Aimovig, too

I could be one of the lucky ones who has a huge improvement in my migraine attacks. If I wait another five or 10 years to try Aimovig and it helps, I would feel like I’d wasted all those years in between. Given my headache specialist’s reassurances and the fact that I’m otherwise healthy, I did my first injection on August 21, 2018. Being scared to try it and scared to not try it told me I had to go for it to see what happens.

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

  • MojoJoJo
    2 months ago

    I am going for my first injection in May. We tried a year of Botox injections with no results. If anything my migraines are more severe. I have chronic migraine and have had them for at least 25 years. I will hope that the Aimovig will give me some relief. It is so depressing to suffer daily.

  • GardensatNight
    6 months ago

    For me, Aimovig has been life-changing. (No, I do not work for pharma, lol.) I have had four doses and to date, no side effects. I suspect it’s like with anything else with this disease, you just have to try it and see how your body responds. Mine responds to almost nothing else. I can’t take any abortives… I can’t even take painkillers because they just trigger more migraines. So many other preventatives didn’t work for me. For whatever reason, Aimovig works. Before I was having migraines that went on for weeks at a time, completely intractable. I’d get a day or two off, then another migraine that could go on for a month. My quality of life was destroyed.

    I still have headaches every day and still have to watch every trigger, but the severity is lower, and when cold fronts come, it’s just a nusiance for several hours instead of being wiped out for at least a week. If your quality of life sucks, I would definitely say to try it. With migraine medicine, my experience has been you just have to see if you respond to a drug or not.

  • wesixcooks
    6 months ago

    Hey guys! If Aimovig didn’t work at first, try it again. The first month I couldn’t tell a difference, but since then, it has definitely helped.

    I’m having many more migraine free days, plus some that are just more mild and easier to manage. It’s very exciting.

    I haven’t been tracking it, but I’m going to start. I would guess it’s reduced my days by at least a third, maybe even half. And then a few that I can head off with just a Goody’s powder and some caffeine!

    As far as side effects, I get a red blotch at the site, no big deal. I also do experience high blood pressure for about twelve hours following the injection. This is a known reaction. I have pre-existing hypertension, so I just take some extra medication. Yes, I reported this to my doctor.

    I also experience the “constipation,” but for me, it’s worked out really well because previously I had chronic diarrhea.

    I am on the program where I get it free for a year because my insurance doesn’t cover it. I’ve already had 4 or 5 doses, and am already worried about what’s going to happen when my head is up.

    Also, my neurologist opted to continue Botox with the Aimovig. So I get the benefits of both. Plus all my other meds too. She says they are fine to take together. I think some doctors are stopping Botox first, but it’s not necessary.

    Good luck!

  • lucylou
    6 months ago

    A Huge Thank you to all who have shared their experiences with Aimovig…. I too am afraid to try, but feel pressured to do so. I had a horrendous experience with Botox so that is a huge factor for me. I have had chronic migraines since childhood and am now 69, so I have been a guinea pig for all so called remedies with many side effects and very little relief in # of attacks. My biggest blessing has been Triptans especially Amerge/Naratriptan…… please keep posting your experiences so we can all decide ….I will absolutely wait since I never want to go through the Botox nightmare again!! I was horribly sick and exhausted for over 2 months. Anyway thank you all it helps to have others who understand.

  • skipper
    6 months ago

    @lucylou, I feel the same way. I have multiple problems, and I cannot afford to get worse, not even slightly worse. So I’m afraid to gamble with the CGRP stuff and have that deplete my immune system or whatever it might do for months or longer. You are not alone. Best wishes to you and everyone who reads this.

  • icorvidae
    6 months ago

    Give it a try! You may not experience what others have and can just discontinue if it doesn’t work out. The Aimovig people will supply a 2 month dose for no charge (and NO, I am NOT a mole for the darn pharmaceutical company). I took my third dose a few weeks ago and happily report a big reduction in migraines (looking like a consitentent 50% per month) and when I do get a migraine, it’s at a 2-3 pain level rather than the 6-9 I used to get, and often if I take aspirin (yes, just aspirin!) with a cup of coffee, it will thwart the migraine entirely. This wasn’t the case before.

    Now, for my side effects: I ice the injection site for about 30 mins, so no issues there; I do have very mild constipation but only in the respect that where I used to be in and out of the bathroom, now it just takes a bit longer, but I still poop everyday; possible increased fatigue but that may also be related to my thryoid meds needing adjustment and it’s not everyday, just some days you really want to take a nap-like when you just woke up from a nap. lol. I have had a couple days where I felt really down and wondered if it was related, but that was in the first 45 days or so, not lately. Overall I’m a proponent. It works! Too many completely headache-free to deny it. I cannot take the tryptans and the Topomax was a nightmare. I also read that the other new related drugs may be even more effective as they effect the receptors on a slightly different level.

    I wish ALL migraine peeps out there relief and a collective hug!!

  • Neely McCormick
    6 months ago

    I am scheduled to take my 3rd shot (70mg) right after Thanksgiving. I experienced side effects almost immediately after my first injection. Constipation has gone hand in hand with my migraine since childhood and sometimes it’s difficult to tell which is worse – the migraine or the chronic constipation. It seems like since I began Amovig, my gut has taken center stage in my life. Thru the years I have found myself able to get out of my head, so to speak, by intense focus on something outside of myself (music, certain aspects of my work, reading if my eyes aren’t too pained, etc.) but gut issues create an obsessive preoccupation that I find almost more unbearable, at times, than the migraine. This is made worse by almost everything I eat now giving me heartburn. Also, the fatigue. Oh, the fatigue. I can be a very high energy person (in waves) and that allows me to power thru things when I have to when I am under attack. Since Amovig, I am finding that impossible. The fatigue is profound. My MD has had me suspend my Botox shots so we can more clearly examine the effectualness of the Amovig and I find my face pain has increased. I have always been harshly affected by barometric pressure but that sensitivity has increased so much my husband calls me the walking barometer. The migraine attacks are fewer but last longer and are just as intense so on that front I would call it a wash. Lastly, the joint pain I have been experiencing has been harsh and very limiting. I tore a tendon in my hip about a year ago and have been in PT. My therapist was about to dismiss me when the hip pain began to rage again, as well roaming pain in my back and knees (not usual pain for me). I have discontinued PT for now because the physical therapist is convinced the medication is having a negative affect on my joints. My doctor wants me to complete a 3 month trial before giving up but honestly, I could forego this next shot and not feel like I gave up too early. I am just as uncomfortable as before and at least pre-Amovig, it was the devil I was used to. All these new additions to my daily suffering are really wearing me down. Finally, the effectiveness of the pain meds I take has been diminished. I think I am taking more pain meds than before because I am not getting (what passes for) relief. That will probably be the last straw for me as my goal and my doctor’s goal is to minimize my suffering and my consumption of pills. I don’t take a lot, but regulators are making it more and more difficult to sustain a pain management regimen and I always feel like I am braced for the government to take my pain meds away from me. I would rather have the pain medicine work with minimal consumption than have to take more to get thru the fog of the Amovig. I am not feeling optimistic about this new treatment. As we all know, what works for one does not necessarily work for another. We all have highly individualized toolboxes for coping with this disorder. I am only sharing my negative experience here because I have found reading about the experience of others extremely helpful in assessing my own experience.

  • MarkF
    6 months ago

    It’s important to fill out a Medwatch report with the FDA. The consumer has a responsibility in addition to your physician to get their adverse drug interaction information added. It takes a few minutes here: https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

    All that said, I too have had problems with Aimovig similar to others (malaise, worsening of depression, constipation, poor appetite) but it also decreased my migraine related symptoms to half or more from before. After reviewing my situation my MD and I opted to stop it.

  • Marian Andrews
    6 months ago

    I am also scared to try it, so I appreciate all your information. My doctors keep giving me meds for prevention, but nothing for abortion because of the “opioid crisis” and I am tired of suffering to pay the price of someone else’s actions. Does my pain not count in order to satisfy some politician that something is being done about “drug abuse”? How does denying me relief from pain help?

  • adkrauss
    6 months ago

    Kerrie – My sincere best wishes for your trial with Aimovig. However, there are many more side effects being discussed in the migraine forums on this very website than you suggest in the article. I for one, have had three doses (70mg, 140mg and 140mg) and am due for my fourth dose next week – – a dose I may not take given I have gotten no relief and several side effects including vertigo like dizziness, nausea, constipation, extreme muscle ache and extreme fatigue. However I have 25-30 migraine days per month for years and also have mild RA. Like you said, there are a couple other CGRP choices available that work a little differently, so I may be jumping ship on the Aimovig and giving Emgality a try, after consultation with my headache specialist. Good luck to all suffering with this terrible illness.

  • Joanna Bodner moderator
    6 months ago

    Hi there @adkrauss, It sure sounds like you are being forced to make a very tough decision on whether or not to go for that 4th dose. I am sorry you are having to face that. The symptoms forum has been very engaging as you mentioned and it is very discouraging to hear that you & so many others are dealing with these difficult side effects. Keep us posted & if you decide to switch to Emgality. Also, you may have already explore our sister site, RheumatoidArthritis.net, but in case you hand’t I wanted to pass along their information. Hope to continue to hear more from you & about your treatment journey in the time to come. Best of luck to you! -Joanna (Migraine.com Team)

  • adkrauss
    6 months ago

    Thanks Joanna. I was not aware of your sister site but will definitely check it out. At present your forum on Emgality is pretty vacant, as I suspect many people jumped on the Aimovig bandwagon, it having come to market first. Another big issue I and others are struggling with is how long to wait between switching CGRP meds. It is new science and there is certainly no definitive answer, but I intend to give myself at least a couple of months from the last Aimovig dose, hopefully to fell the side effects subside first. Will hear what my neuro thinks shortly.

  • Andrea
    6 months ago

    I gave myself my 4th Amovig injection this past Monday and all I can say is that it’s been life-changing for me. If I do get a migraine, its significantly less severe. Even one of my biggest triggers – a drop in barometric pressure – hasn’t even triggered a migraine. I haven’t noticed any side-effects either. I’ve continued to receive Botox injections every 3 months and nerve-block injections/trigger point injections every 2-4 weeks. I can’t use triptans ever again because I had a stroke. I need this medication to be functional.

  • pwrnapper
    6 months ago

    I’ve been taking Aimovig since it first came out 5-6 months back and all I can say is “it worked for me” and I have both Migraines and Cluster Headaches, stopped them once I increased the dosage to 140 mg (2 injections per month). I’m really glad I have excellent insurance and only pay $36 per month. Side effects, yes there may be some. Personally I have nasty constipation and renal issues. I recently went in for a Colonostomy and the doctor said I was backed up even after taking the pre-test procedure in 100% compliance so constipation can be an issue. But compared to having 5-6 migraines or Clusters per day I am in heaven.

  • Anne
    6 months ago

    The side effects that people report are the same that people get with placebos which is probably why they weren’t indicated in the research results. Aimovig works great for me. I hope it does for you!!!

  • adkrauss
    6 months ago

    Anne – In all due respect, that is a pretty broad blanket statement and comes off to me as someone with a biased agenda. Do you work for or have any financial interest in the makers of Aimovig? I reported my own experience with Aimovig in the comments above. That being said, I am extremely pleased it has worked for you and many others I have read about.

  • skipper
    6 months ago

    @icorvidae If you knew what adkrauss has gone through with Aimovig, then you would understand the reaction. I cringed when I read the post by Anne suggesting others’ bad side effects were unfounded. Either Anne is completely uninformed about the adverse effects people have been reporting here, or Anne is attempting to counter negative feedback about the drug. Maybe the same situation has happened to you on the other site. Please read further about the unfortunate reactions that others have had.

  • icorvidae
    6 months ago

    Hi Anne, I too was accused on another site of being on the side of big pharma for posting a positive review of Aimovig. It comes across as extremely arrogant.

  • skipper
    6 months ago

    @adkrauss I see ads on this site for Aimovig and I get emails from migraine.com with Aimovig ads in them. There are surely posters here with an agenda. We can click on each username and read every post they’ve made, and judge for ourselves where their loyalties lie. Kudos to the migraine.com team for keeping this forum and the articles neutral and for allowing migraine sufferers to continue to express ourselves here, uncensored. They’re paying the bills with revenue from the drug companies, but their business model depends on the content and traffic that we migraine sufferers create. So as long as people have migraines and keep coming back to this site, it’s a win-win!

  • bluebird
    6 months ago

    Hope this goew well for you. Thank you Kerrie for this honest piece of writing. It’s not a simple choice. The short term trials on healthy subjects do not account for the condition of many Migraine syndrome people. The nervous system is so complex and feedback loops so many …it is nearly impossible to know what these drugs will do over time. Not to mention how costly they are. Migraine patients have been encouraged in the past to take drugs that have not been designed for migraine and have awful side effects. We did that. We complied because…we had hope. We were trained to correlate onset of migraine with triggers…foods etc. Often times these coincidences …like craving sweets or salt …lead to avoiding important comforts and are not specific to the “triggers” but to the progression of the episode of electo-chemical disruption of the brain. We feel craving and blame what we eat. People are reporting so many side effects…it will take a while to sort out what is coincidence, what is fear-based and what is a risk and for whom. For many with limited finances, the hope of relief may not be even within reach.

  • aero1
    6 months ago

    I truly hope this drug helps you. I tried it for 3 months. The first at the 70 level and the next two at 140. It was a disaster for me. Each time after I took it I went through some of the worst migraine spells I’ve had (longer than normal periods of intense migraines) which were aggravated by it making the triptan I take much less effective. I will not be taking it again. I hope you have better results but if you see this happening with you after the first dose, I’d not do any more if I were you.

  • Candy Meacham
    6 months ago

    I felt exactly the same way, afraid to afraid not to. My fears were clustered around the fact that it is an injection that lasts 30+ days and if you have side effects, you’re stuck w/ them for a while. My first dose was in June, and indeed the side effects, constipation, have been troublesome to say the least since I have a lot of gut symptoms. Also effectiveness of my long-term abortive, naratriptan, seems to have decreased. I’m not impressed w/ the efficacy and am now struggling w/ the decision to discontinue. I hope it has worked for you, Kerrie. Like you, gammacore has helped reduce the severity of migraines including some of the gut symptoms. Good luck.

  • pam bitterman
    6 months ago

    With regard to the new “preventative” treatments, I can’t imagine that all migraine sufferers wouldn’t want to go that route, barring dangerous side-effects or… well, I guess barring just that! What a miracle that would be, one I am sure we have all prayed for! So I think we all might have to wait just a little bit longer to see what happens when all the bugs are worked out? I am following this closely. Anybody else with any info regarding this, please post! We are our own best source of help, information and support. We have no agenda other than the chance of actually having a normal life again! I hope, hope, hope this or something like it works! So happy research is ongoing finally in the direction of prevention!

  • skipper
    7 months ago

    Kerrie, great article! I went through the same decision-making process, and decided I could not take that chance of getting more fatigue and depression. Your first injection was over two months ago. Can you give us an update how you’re doing?

  • Kerrie Smyres moderator author
    7 months ago

    Thanks, Skipper. I’m not sure how it worked. It seemed to make my migraine attacks slightly worse and a little less responsive to treatment. However, I have some other health issues going on that may be contributing to the reaction. I may try Aimovig again once those are sorted out. I didn’t have any other side effects.

    Take care,
    Kerrie

  • skipper
    7 months ago

    Kerrie, thanks for your reply. Others have also reported worse migraines that are less responsive to treatment, as you surely have seen. It would be good for the support community to figure out the common denominators. There is literally no data because many with multiple health issues were excluded from the studies. Those who do have other health issues should be able to choose whether these new drugs are right for them or not.

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