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CGRP Worked– For A While

I was one of the first in my doctor’s practice to start Aimovig. I knew that the CGRPs were arriving, and I was excited to have a new treatment option. At the time, I was having 3-4 severe migraines per week, and my quality of life was poor. I was managing to work, but I could not do much else. Most of my weekends were spent on the couch.

I felt a difference as soon as I started Aimovig. I went days, even weeks without a migraine, and when I did get them, they were much less severe. I started doing things I hadn’t done in years–walking to work, taking piano lessons, making bread–it was like a new life!

Then I hit the end of the first year. 2 months ago, I took my Aimovig injection, and I had a 5-day migraine. I thought it was because it was the first time I used the 140mg syringe (I had been using 2 70mg syringes.) I asked my neurologist to prescribe the 70mg syringe, and the same thing happened two more times.

I spent the last four days with a severe migraine, with more nausea than I usually get. I am also having more problems with severe constipation.

I have decided that I will take a break from Aimovig. But I am unsure what to do next. Should I try a different CGRP? I really did not get any relief from other preventatives. Has anyone had any experience switching CGRP drugs?

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

  • yvon22
    3 weeks ago

    Hi Phillygirl,
    I switched from Aimovig to Emgality August last year. Aimovig just wasn’t working for me anymore after 6 months. I had constipation and muscle cramps from the beginning and after a few months my migraines started to get worse again. I’m very happy with Emgality though! It took 4 months for me before it started to work well so please be patient for a while…I’m now episodic instead of chronic and I’m so delighted!
    So to everybody: don’t give up too soon!!

  • Janet
    3 weeks ago

    Philly girl…
    I began aimovig July 2018..2 /70mg injections…that’s all that was available then….I too got my life back for awhile..then I got so sick..so sick..not just migraines..fatigue..flu like symptoms….migraines..nausea..didn’t leave the house for months..then we moved from Las Vegas to Atlanta to be closer to family…back on aimovig..now 140 mg last October…stopped after 4th injection after reading the article I’ve included in this post….getting sicker and sicker again..all the same symptoms plus more..been fighting a sinus infection for months..ear infection along with a cold and the flu like symptoms again..not to mention migraines with aura…did not inject because last week a medical news article reached my inbox and opened my eyes..I’m sure migraine.com won’t allow this but I’ll try putting it in this post…the migraines are back worse than ever because I have NO prevention now…my neurologist INSISTS on botox…my husband and I don’t feel it’s right for me..been there done that…my husband is out of town For 11 days now and will be returning by the weekend…and I’ve been sick in bed alone with all these ailments I know now are side effects of aimovig..I have reported this to amgen once again like I did last year…for me aimovig is poison and I’m waiting for my April 1 appt with a specialist who is a brain neurologist….the side effects in this article I am experiencing plus more..each migraine now I have an aura with also…that was gone for years but reappeared as aimovig continued and has worsened now that I’ve stopped….I pray this link will not be erased by the commentator..it’s so very important!
    It is more than half way down under long term effects…I hope my voice is heard
    I’m leaning on faith now until the next step is before me.
    Blessings
    Janet Jones

    https://www.medicalnewstoday.com/articles/326056.php

    It’s near the bottom

    Here’s what it states..please migraine.com let my voice be heard..please.

    In one long-term safety study that lasted around three years, the most common side effects reported with Aimovig were:

    back pain
    upper respiratory infections (such as the common cold or a sinus infection)
    flu-like symptoms
    If you have these side effects and they’re serious or don’t go away, talk with your doctor.

  • katetyndall
    3 weeks ago

    I did switch from Aimovig to Emgality, but had a severe constellation of symptoms that started with Aimovig and continued with Emgality. My neurologist & I agreed that trying Ajovy was not worth it.

    My side effects showed up early & increased over time.

    Since you had a good year with Aimovig before it failed you, it might be well worth it to try one of the others. It might end up that you could switch back and forth—from one year to the next—between your best two CGRPs and be able to control your migraines this way with minimal or no side effects. Win win!!

    There is a 4th CGRP coming to market, one that is given quarterly, but I haven’t heard much about it lately.

    Much luck to you in your migraine journey.

  • deedueck
    3 weeks ago

    I have tried both Aimovig and Emgality . I was a participant in the Emgality ( glacanuzumab) drug trials – I had some relief at first but ( decrease in migraine days for about 7 months) then I started having severe migraines more frequently – I was followed with monthly blood work ( because of the trial) and it was found that I had developed antibodies to the medication . Basically my immune system was fighting the medication . This resulted in a flu like feeling for at least a week after each injection and over time I stopped responding to the injections altogether. I am currently on Aimovig but I have found after four months that I am having severe constipation, insomnia and feel like I have the flu ( muscle aches, low grade fevers, and severe nausea) for a week or more . And this last month my migraines have been the worst they have ever been- I see my neurologist this month and I don’t think I will be continuing with these medications!

  • gymgirl
    3 weeks ago

    Hi all,

    I have suffered from migraines since I was 7 years old. When I was young, i would get them about once a year. As I’ve gotten older, they’ve increased to 4-5 times a week. I have been on Aimovig for 1 1/2 years and it hasn’t been working very well. I’ve also been having trouble finding a new doctor since my neurologist of 30 years retired. I got a new Dr. and she just started me on Ajovy. I am hoping it works. I want my life back. It is so difficult to find a caring, empathetic doctor and someone who wants to help you on this frustrating journey of chronic pain. My heart goes out to everyone who is struggling with this disorder.
    I have heard that after a while, when one has been one of the CGRPs for a while, your body
    builds up anti bodies and you may have to switch to another CGRP.

  • sarahmchb
    3 weeks ago

    I had a somewhat similar Aimovig journey. My first year on Aimovig was amazing. I had no migraines at all! But I was experiencing hair loss and read that this was a possible side effect. Plus I got severe constipation. I stopped the Aimovig last December. My neurologist advised just seeing how it goes and if I do get a migraine to take a naratriptan which works for me. I had an awful migraine yesterday – the first one since I stopped Aimovig – and now I’m in that hangover phase. The migraine is gone but I’m so tired and out of it. If they start coming back more frequently, then perhaps I’ll go back on Aimovig since it was working. I just hate the side effects!

  • Janet
    3 weeks ago

    Do yourself a favor and forget aimovig…I’ve lost a year of my life because of the effects..it took away migraines great for awhile..but that’s a distant memory for the way I don’t have a life because of it…now I’ve been inside for months..weak like I have the flu..hair loss when I have strength to shower ..nausea..a 10 day cold that’s just clearing up and I don’t know until Monday when I return to the ENT of the sinus infection is gone…not a good trade off …all I have now is NO prevention med..fioricet..frova..advil…I hope you and everyone read the article on aimovig long term side effects…being so sick for a year with all of them…and no migraines is NO trade off when you live in your pj’s and never get better…now body is looking for aimovig and aura migraines haunt me.
    I pray for all of us
    Janet

  • TB3696
    1 month ago

    I tried Aimovig, but the side effects did me in. So I moved over to Ajovy. It worked to some degree, but what really helped reduced the frequency of my migraines was when my neurologist suggested a low dose of Trokendi, 25 mg., along with the Ajovy. Together the two drugs made things significantly better for me. My neurologist told me that his patients were having good luck with that combination. I should note that I also take 400 mg. of B2 and magnesium citrate daily as well. I hope you find something that works for you.

  • Allyson.Ellis moderator
    1 month ago

    Hi PhillyGirl, thank you for reaching out! I hear how discouraging it feels to suddenly have the Aimovig stop providing the relief it had been. There have been others in the community who made a switch to a different CGRP and found it to offer better relief for their symptoms. I thought this discussion from the forum might be of interest to you: https://migraine.com/topic/switching-cgrp-based-meds/ It is important to remember that all bodies are unique and you may or may not respond similarly to others. I would encourage you to discuss your options with your doctor and see what s/he feels would be best for you to try next. Please keep us posted on how you are doing and what comes next for you! Wishing you a gentle day. ~Allyson (Migraine.com team)

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