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CGRPs (calcitonin-gene-related peptide)

Have you experienced side effects from Aimovig?

  • By 1jamms

    I used Aimovig for 2 months when it was released to the market this yr. After experiencing strange side effects, my doctor will no longer allow me to continue to use it until further information is found. Approximately 3 minutes following the 1st injection (in the my right thigh), my lips from midline to the right went numb and tingled as did my right shoulder. It felt like Novocaine wearing off. This lasted about 20 mins in my shoulder and 1 hr in my lips. The 2nd month, I injected my left thigh. At 3 minutes, my tongue from midline to the left went number and at 4 minutes it spread to my lips and the entire left side of my face as well as my left forearm and hand. Again, it felt like Novocaine wearing off – no paralysis or anything. This time it lasted for 1 hr in my forearm and hand and almost 3 hrs in my face. My doctor and the pharamists are unsure at this time if it is an allergic reaction but my dr. is not willing to take a chance as it could be a worse reaction the next time. As for other side effects: I also have polymyaglia rheumatica and since starting the injections, I have had a flare up in the joints in my hands – could by incidental. I just wanted to share this info. I still believe in these injections and hope I can try them again. I wish all who are taking them well!

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    • By Nancy Harris Bonk Moderator

      Hi 1jamms,

      Thank you for sharing your journey with us. I’m sorry to hear Aimovig didn’t work out for you, but you’re not alone.

      I see you already answered the latex allergy question.

      Ajovy, another CGRP drug was just FDA approved that may be something to discuss with your doctor.

      Keep us posted,
      Nancy

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  • By cleajoy

    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. No arthritis diagnosis. Its worse in the morning and wears off except for my wrist and fingers. However, when I went up to 140 mg it seemed to be less severe.
    First time I had an injection my lips felt slightly numb for about 2 min but faded quickly and not since.

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    • By Nancy Harris Bonk Moderator

      Hi cleajoy,

      Thank you for sharing that with us. In reading over the prescribing information for Aimovig, I don’t see anything mentioned about joint issues. A minimal number of people experienced muscle cramps/spasms, but that’s not quite the same thing.

      Keep us posted on how you are doing,
      Nancy

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    • By Nancy Harris Bonk Moderator

      Hi cleajoy,

      Thank you for sharing that with us. In reading over the prescribing information for Aimovig, I don’t see anything mentioned about joint issues. A minimal number of people experienced muscle cramps/spasms, but that’s not quite the same thing.

      Keep us posted on how you are doing,
      Nancy

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  • By Dana

    I actually just posted a new thread with a question about side effects and reading this has already answered one of my questions. 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 even had a massage and my neck seized up on the table. They had to send a female employee to help me up and put my shirt on and had to call my husband to pick me up, I couldn’t move my neck at all. But I also have extreme fatigue. I get up at 6am, make lunches, get everyone off to work/school and can easily lay back down (and have) around 9 and sleep until my kids get home at 3. Is anyone having problems with fatigue? I certainly can’t live like this. All thoughts are welcome 🙏
    Dana

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    • By Dana

      @NeelyMcCormick
      Wondering how long you’ve been on the shots and at what dose? I’m still having issues and I’m due to take my 3rd shot (my first 140) next week and I’m hesitant, especially because I’m not getting relief at 70. So, do I try the 140 knowing it’s going to make the side effects worse with just a 50/50 shot? So frustrating!
      Hope to hear from you

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  • By eastcoasta

    I am having terrible side effects since my first shot a few days ago. Dizzyness, nausea, Insomia, and worst of all the worst migraines of my life everyday. That are not responding to my meds. Aimovig website only mentions constipation. There are reviews on drugs.com where a lot of people are having a terrible time with this. I wish I knew how to get it out of my system faster. I was reading the CGRP plays a role in protecting the heart, melotonin, pituitary gland etc. I read an article from a physician that stated blocking this receptor needs to be studied more.
    I can’t wait for this to wear off. If they had posted all these possible side effects I would not have taken this drug.
    Here is are recent reviews of people who have used this
    https://www.drugs.com/comments/erenumab/aimovig-for-migraine-prophylaxis.html

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  • By adkrauss

    I have posted a number of times under the other CGRP threads, but thought I would weigh in here. 25-30 migraine days per month for years and suffering for decades. First Aimovig dose was 70mg and no benefit, followed by some of the worst string of migraines since being treated 20+ years ago – with usual abortive imitrex (tab and injection) being less effective. Second dose upped to 140mg and due for third on October 18. In the last few days I believe I have seen it providing a benefit as far as migraine frequency and strength. HOWEVER, during the same time, 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 type II diabetic on insulin and have RA – but NOT taking any med for that). Will keep you posted and report apparent side-effects to FDA if they continue to persist much longer.

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    • By Nancy Harris Bonk Moderator

      Hi adkrauss,

      Thank you for sharing that with us. I hope you continue to see an improvement in migraine attack frequency and severity. And feel better!

      Nancy

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  • By Mquance

    I took Ajovy for the first time yesterday and have since then been dealing with worsening thoughts of self harm. I don’t have any symptoms of depression or reasons to be depressed or suicidal. I told my neurologist about it, but he just brushed it off as depression and had me involuntarily committed until I could be seem by a psychiatrist. The psychiatrist agreed with me that it was probably due to the Ajovy. Has anyone else had similar symptoms?

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  • By Joanna Bodner Keymaster

    I am so very sorry to hear this. Great job already bringing this to your doctor’s attention. Let me also share some resources with you. You can also report this possible adverse side effect to the FDA – https://www.fda.gov/safety/medwatch/howtoreport/ucm053074.htm.

    Finally, major kudos to you as you are already taking all the right steps by reaching out, speaking to your doctor and looking for support with our community, but I did also want to share that in case you are ever in an immediate crisis or seriously considering self harm, please know there is always somewhere to turn & someone to listen at National Suicide Prevention Lifeline. They are on staff 24/7 to answer calls at the lifeline; just dial 1-800-273-8255). Of course we are always here for support & to lend an ear.

    Warmly, Joanna (Migraine.com Team)

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  • By Neely McCormick

    Serious constipation and unsettled stomach. These are part and parcel of my migraine. However I have noticed a different feeling in these areas since the shot.

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    • By MrsMiMoo

      My Neurologist told me that IBS and poorly bowel come as a partner to Migraine. I have had IBS all my life – and my normal family doctor didn’t know this. Please be aware that IBS and tummy issues come with Migraine so they may be just that rather than a side affect.

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  • By eastcoasta

    Two weeks later still dealing with awful side effects nausea,dizziness,insane fatigue,insomnia,constipation, my heart races, shortness of breath and Migraines worsened. I also started a period a week after the shot that hasn’t stopped. Ive read of other women having break through bleeding On Forums on reddit. Also read others are experiencing hair loss. I WOULD HAVE NEVER INJECTED THIS IF ALL SIDE EFFECTS HAD BEEN LISTED! The half life of this is 28 days. Which means it will take a month for half of it to be out of my system.

    Aimovig-Erenumab-aooe is produced using recombinant DNA technology in Chinese hamster ovary (CHO) cells.

    Check out this article I read about this drug

    https://www.hormonesmatter.com/aimovig-miracle-migraine-treatment-unnecessary-risk/

    Here is part of what the article reads. The researcher got this info from Aimovig website for healthcare professionals

    In Studies 1, 2, and 3, 1.3% of patients treated with Aimovig™ discontinued double-blind treatment because of adverse events. Although only injection site irritations are reported by the FDA, the study indicates additional adverse effects, such as cold, upper respiratory tract infection, ankle fracture, viral gastroenteritis, sepsis, colitis, vestibular neuronitis, backpain, migraine, ovarian cyst, and sinusitis. One person also experienced cerebral venous thrombosis (see table 3). The most frequent injection site reactions were injection site pain, injection site erythema, and injection site pruritus—as per the label. Interesting to note that constipation and site irritation are listed as side effects on the label.

    Additionally this same protein CGRP that Aimovig is binding to is responsible for protecting your heart, pituitary gland, thyroid etc. so I can imagine the long term side effects from this stuff. I WONT be trying it again. I can’t wait for this to be out of my system. So please don’t thinkthese side effects are a coincidence or you picked up the flu. It’s this drug. You can also read others experiences on drugs.com

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    • By cleajoy

      Eastcosta, thanks for this information I will check it out. I’ve had four injections and I would say fatigue and arthritis like symptoms continue to be my strongest symptoms. I did have what I thought was the flu two weeks ago and that’s still lingering. I just force myself to keep going. I shared the fatigue with my neuro who is a migraine specialist. We didn’t connect it with the Aimovig, but we weren’t discussing Aimovig at the time, we were discussing lifestyle. As I reflect, my lifestyle hasn’t changed. The fatigue has become an interring problem since I started the Aimovig.

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    • By eastcoasta

      You’re very welcome. I am having major fatigue as well. Can barely function. And now for the past two days I am having major muscle pain. Yesterday it felt like I had a torn muscle in my leg. And now it feels the same way in my left arm, extremely painful. I’m so tired of feeling like I’ve been run over by a bus from this medicine. I think I’ve aged ten years.

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    • By Dana

      eastcoasta
      I think I’m the one who first mentioned the fatigue and muscle pain and now I’m seeing so many people complaining of it. I’m starting to wonder if this is something that should now be reported to the FDA..?
      Anyone have thoughts?
      Dana

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    • By eastcoasta

      Dana
      I think we should all write into the FDA. Maybe they will end up listing all these side effects. And if someone still wants to take it then at least they were informed. If I had known about all these side effects I would have not tried it as I am sensitive to meds to begin with. I am now having chest pains which is really scaring me.
      I wish I had never tried this injection. And the only reason I did was because I was told only constipation was a side effect. I’ve read others having a hard time on it on drugs.com and forums on reddit.

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    • By Scarleight271

      Hi Dana,
      I definitely think you should notify the FDA. They are relying on the early users of these new drugs to gather more data. Don’t think of it as complaining or an inconvenience; they want to hear from you. 🙂 I’ve noticed every package insert, Rx print out, box, mailer, everything has the FDA number prominently listed…that isn’t a mistake or coincidence. I think too often we question ourselves…”am I feeling better?” “is this side effect new?” We know our bodies. To anyone reading…right? Be confident in sharing any side effects and know you are helping yourself and others.
      Hang in there and I hope you find what will work for you!!
      Tara

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    • By dailypain

      I’ve been a chronic headache/migraine sufferer for 30 years. I literally just took my first Aimovig 70mg injection four hours ago and started feeling nauseous shortly thereafter. That is what brought me to this website – I started looking up potential risks associated with Aimovig and I found this wonderful migraine site, so I joined. I’m hoping my sudden onset of nausea is a mere coincidence, but I’ll keep you posted. I hope you start feeling better soon. I’m sorry you’ve had such a horrible experience with this new drug.

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    • By eastcoasta

      It’s been18 days since taking the 70 mg shot and still am having a very difficult time. Can someone please tell me who has taken the Aimovig and experienced side effects how long it took before you felt normal again? How long did it take for this to wear off? I realize the half life is 28 days, does this mean I am going to feel like this for two months? Aside from feeling immensely fatigued, dizzy, muscles feel torn, migraines worse, chest pains, I am getting severely depressed. Also woke up today to swollen glands and sore throat.
      If all these side effects had been listed I would have never taken this drug.

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    • By Nancy Harris Bonk Moderator

      Hi eastcoasta,

      The half life (how long it stays in your body) of Aimovig is 28 days. It will be out of your system soon!

      Good to hear you reported your adverse side effects to the FDA!

      Nancy

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    • By eastcoasta

      @neely
      I went on the FDA med watch website and filled out the form about the side effects of the Aimovig. It’s pretty easy to do and only took a few minutes.

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  • By LHR915

    I am in my 3rd month of Aimovig. I feel like i have my life back! after several years of medication therapy about 1.5 years ago the meds just stopped working. i went through many other medications, botox, vitamin supplements etc. with no relief and almost daily migraines. Then came Aimovig!
    I do however experience incredible muscle/joint pain in my hip post injection. I switched this month to the other thigh and could feel the pain in my hip within minutes of the injection. I see other people are also experiencing joint/muscle pain so i know its the meds. Honestly, I am willing to endure the joint pain to have migraine relief…but i do wonder what the long term effects may be as a result…

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  • By Ang

    I am very interested in everyone who has mentioned fatigue. I have taken 3 Aimovig shots and had initial problems with constipation but that cleared after a few weeks. I’ve had horrible heartburn – I didn’t even consider that that could’ve been actual chest pains.
    I am considering stopping because I really have not had a reduction in # of days with migraine, though I do think that some have been lighter but just as long. I have also had challenges with fatigue and just wanting to go back to bed.
    (Not normal for me.)

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    • By Neely McCormick

      I too have had horrible heartburn, which is not something I have had a problem with in the past. Zantac is now an almost daily addition to my already heavy load of medications. Also,my constipation is persistent and troubling. On the positive, I have been having better mornings. Instead of waking up in a painful stupor, I seem to come to a full waking state faster and with much less pain. My migraine episodes have been about 2-3 per week, a couple have lasted up to 36 hours and have been very intense. I have noticed a reduction in the constant headache I walk around with and sometimes I think my head doesn’t hurt at all. I take my second shot in a week. Fingers crossed.

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    • By auntiev6

      @Ang

      I had horrible fatigue immediately following my injections. I only had one set of injections 5 weeks ago. The fatigue started lessening after 3 weeks and has finally dissipated just in the last few days. I basically just sat on the sofa and did nothing. My side effects were so intense for 3 weeks that I refused to have a second round of injections.

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  • By eastcoasta

    I am 23 days since taking the Aimovig. Still have extreme fatigue. Today I am suffering tremendously with a migraine I am unable to break. I’ve tried taking my usual abortive meds and they aren’t working. Can someone please tell me who stopped taking AIMOVIG if your meds started working again after you stopped?
    I am scared to death that this drug has changed my migraines and I am no longer able to get rid of the pain. I have had so many side effects from this drug. Like I needed to feel any worse. I’m also terrified of what is gong to happen as it starts wearing off am I going to be in this pain every day where my meds don’t work. Can someone whose stopped this drug give me any insight please.

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  • By beachmom001

    I was in the chronic migraine trial for this medication (240mg) for a year and it reduced my migraine days from 20 down to about 4 each month…I got my life back! NO side effects! So I was SO excited when Amgen finally got it approved. I have now had 2 months of injections (140mg) and I have been exhausted and recently have been having major joint and back pain! My knee pain got so bad I went in or an X-ray. Now my hip is starting up. I was refusing to see any connection to these symptoms and the Aimovig because I hadn’t had any side effects for that trial year. But now that others are speaking up it all makes sense…and I don’t feel so crazy! I will definitely be reporting my symptoms to the FDA. Hopefully others will to. Such a bummer! As far as my headaches go, the relief hasn’t been nearly as great as in the study. Maybe reduced them from about 20 a month to 12?

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  • By auntiev6

    I let myself be romanced by the free offer of Amovig and consented to having the injections. I experienced horrible side effects and refused to have the injections done a second month.

    The side effects I experienced are: 1) Severe joint pain at all of my joints – toes, ankles, knees, hips, etc. I only have osteoarthritis in my knees. 2) Constipation which lasted for 4 weeks. 3) Severe muscle pain in all muscles 4) Horrible fatigue 5) Severe migraines every day!! 6) Cramping of feet and calves to the point they were knarled

    These side effects lasted for at least 3 weeks except as noted. I am reporting these side effects to the FDA. If you haven’t reported your side effects to the FDA you need to do so. This so-called “no side effect” medication has plenty.

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  • By Dana

    So I’ve posted about Aimovig causing muscle pain and fatigue, but I want to get real specific.
    In addition to my migraines I have Degenerative Disc Disease, bulging discs and Cervical Spondylosis. It has caused me pain for years, I’ve done Corticosteroid shots, PT, seen a Chiropractor, nerve blocks, Botox was supposed to help (it didn’t). Now since I took my first 140mg shot on 10/13 my neck pain has been unreal. It goes into my shoulder and arm/hand, which it always does….. but never like this. I feel like my neck has locked up and my arm is on fire. I am even having problems in my leg. At first I thought I was having a bad flare, it is getting cold, but then I thought this could be the Aimovig. When I was doing the 70’s I was having what I’ll now call muscle fatigue, this is pure hell.
    So, my question is…..is anyone having flares of other problems. MS, arthritis, fibro…..etc…..
    Should I chalk this up to the Aimovig? The timing is right. Or maybe it is just a flare and I should call my spine doc.

    My second question is…..I’ve gone onto the FDA site to report and it’s asking for lot numbers from the box…etc…., I don’t have that anymore……what do I do in that case.
    Thanks in advance for all advice
    ❤️Dana

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    • By auntiev6

      When I reported my side effects to the FDA I just left blank the lot number, box number, etc. because I never had that information. My neurologist administered the injections himself.

      I had the muscle pain you are describing and I do not have fibro or MS. The only arthritis I have is osteoarthritis in both of my knees. The joint pain I experienced was in every single joint in my body. I attributed my pain directly to the Aimovig because within a few weeks it dissipated and I had never experienced pain like that before.

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    • By beachmom001

      I’m curious to know if the joint pain dissipated because you stopped taking the Aimovig or are you still taking it? I’m wondering if mine will dissipate as well?

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    • By Dana

      @beachmom001
      I am still in terrible pain. In fact my doc just started me on a steroid pack, a prescription NSAID and muscle relaxers. I definitely will NOT be taking a 4th shot. Where are you in your treatment?
      Dana

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    • By Dana

      @auntiev6
      Thanks for the info on reporting! You said the pain has dissipated? Is that because you’ve stopped taking the injections? If so, how long ago?
      Thanks,
      Dana

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    • By auntiev6

      @dana

      The pain has dissipated for me because I have stopped taking the injections. I only took the injections (two – 140 mg) one time. It has been 5 weeks since I had the injections. The side effects have finally just dissipated in the last few days.

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  • By beachmom001

    I am on my third injection. I had absolutely no side effects when I was in the trial for this medication and I was taking 240 mg every month. The joint pain started in my left knee and now I have excruciating pain in my hip and it hurts to walk. feels like it’s bone on bone. I’m so torn as to if I should stop the medication or just see if the side effects go away? Or maybe I go back down on 70 mg and see if I have less side effects?

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    • By adkrauss

      Beachmom – I am interested in the fact you say you took 240mg injections in the trial. Was that for the duration of the whole trial and how many injections in total? Silly question, but do you that you didn’t receive a placebo during the trial?

      My update: I took my third 140mg injection three days ago, with the first two being 70mg and 140mg. I previously have discussed my apparent side effects of vertigo like dizziness, extreme muscle ache, fatigue and some of the worst migraines of my life, with abortive not being as effective. First three mentioned side effects began to dissipate towards end of second dose. Three days into third dose, first three side effects have not surfaced BUT i still have not gotten the slightest reduction in migraine frequency or intensity and would say migraines gotten worse under both criteria. Of course having 25-30 migraine days per month for years doesn’t leave much energy to go around, so fatigue is always there.

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  • By LHR915

    I just took my 3rd injection. I do find a decrease in my hip joint pain if I alternate thighs for injections. The drastic decrease in migraines for me is worth the trade off of the joint pain. I did also fill out the FDA report… only hope there is no long term effects…

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  • By eastcoasta

    Can someone please tell me who has gone off the Aimovig how long it took before your triptans worked again? It’s been 29 days since my first injection and finally the side effects have lessened. However my triptans are still not working for my migraines. I have taken two today along with4 excedrin and still can’t get rid of this migraine. I’m so over this with what the Aimovig has done to me.

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  • By migrainesgoaway

    Hi everyone.
    I just started this on October 17. My doctor did not have that much information to give me except the literature on it and to tell me to research it before taking it to make sure that this is something that I wanted to do. After researching it ,which I did not see the sites that I am seeing now ,I took the shot and I am having extreme fatigue (beyond anything I’ve ever experienced) and poor coordination. I always have to fall asleep with the TV off and the room being dark.

    However I am finding myself falling asleep on my couch mid day. When I am driving I feel like I need to pull over and just fall asleep. Scary!( I live in a small town so everything is within 5 miles) however it’s not worth this!

    I will not take a second dose.

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  • By brookiepooh81

    After a few weeks from first injection, I started having joint/bone pain. I am due for my 3rd injection next week and over the last couple months I have had a severe increase in my joint problems in my one shoulder (I cannot for sure say this is related to Aimovig), however, I have started to have alot of bone/joint pain in my wrists, ankles, feet, toes, and my right thumb (bottom knuckle joint leading up to middle knuckle joint) with swelling. Also had alot more pain in my back/hips than is my normal amount. I live with my heating pad some days. I haven’t seen much of a difference in my migraines yet, but haven’t seen any increase either. Just concerned about these other symptoms.

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    • By Nancy Harris Bonk Moderator

      Hi brookiepooh81,

      Thank you for sharing your experience with us. I am sorry to hear you are having issues with joint pain. I understand your concern and really hope it’s a coincidence.

      Will you keep us posted?

      Nancy

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  • By jjam888

    I am at the end of my 2 months at 140. I have been experiencing a lot of visual changes: temporary visual lost, words moving, blind spots, spinning, etc.

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  • By 1qsljqg

    My daily migraines started 5 years ago after MTBI. Prior medications haven’t helped. I have received 2-70mg & 2-140mg doses of Aimovig with no improvement. Side effects are constipation & a new severe frequent intermittent sharp pain on the right side of my head. Also, have trigeminal neuralgia type 2, which has worsened. I’m on a round of steroids now to calm everything down. Disappointed after waiting so long for Aimovig.

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  • By Nancy Harris Bonk Moderator

    Hi 1qsljqg,

    I’m sorry to hear this. I know so many were counting on this medication. Try not to lose hope, the other CGRP medications work a bit differently. If Aimovig doesn’t work, the others might.

    I also suffered a TBI in 1996 which changed my life. My migraine attacks are more difficult to treat since and I have daily head and neck pain.

    Keep us posted on how you are feeling,
    Nancy

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  • By Neely McCormick

    @dana
    Took my second dose (70) on Saturday and I am still feeling joint pain and horrible fatigue. My neurologist wants me to complete 3 months before we discuss any changes. I was interested to read @migrainesgoaway that she is experiencing sleepiness. I am too! I didn’t immediately put it together but if I sit for a little while (TV, read) I just can’t keep my eyes open. I was driving for over an hour yesterday and I was struggling to keep my eyes open and that was scary. I experienced that with Topomax and eventually had to stop it. On the headache side, I have taken much less pain medicine and my migraine episodes are farther apart. Sometimes I even think I might not have a headache! (I’m not sure what that feels like exactly since I have had a headache since I was 10) This is all very confusing. I think this drug has potential to improve the quality of life in terms of migraine but what good does it do me if I am passed out on the couch? I hope everyone stays engaged here and keeps sharing. Thanks all.

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    • By migrainesgoaway

      Neely,
      I fall asleep on my couch. Daily. I have never in my life been able to sleep this way. I hate this. I’m so tired. I would rather have migraines than this. There’s no quality of life. I have to work etc. My husband said exactly what you wrote. What good is it if I’m passed out. Ughhhh

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    • By Dana

      @Neely
      I saw my neurologist yesterday and she told me the muscle pain is now a widely known side effect amongst physicians, so I’m curious if that will now show up as a side effect on the box. And I know my fatigue is the Aimovig, because I’m on some meds that make you tired and have been for years (300mg of Topomax to name 1) and the fatigue didn’t start until the Aimovig. My doctor wants to send me back to Jefferson Headache Clinic for their Lidocaine Infusion to try to break this migraine cycle and then start the Emgality for preventative. She said she’s liking that one more the the Ajoy because it has a loading dose and so far the only side effect is injection site pain, but we both know that can change! I don’t know, I hated Jefferson, it was awful, but it did break my cycle (that part was heaven on earth) they just didn’t find the right preventative after. We’ll see I guess. I also have to get my insurance to agree again, which is like asking them to give me one of their kidneys.
      Hope your days will get better.
      Dana. p.s I did do 3 months of Aimovig

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    • By auntiev6

      @ Dana

      For the side effects to show up on the list either you or your physician need to notify the drug company with your side effects and you or your doctor need to notify the FDA.

      Quite frankly, the trials for Aimovig were so narrow, only a little over 2,000 people tried the drug before it was approved by the FDA, it was set up to not get side effects for the drug!

      My neurologist is mad at me for not continuing with the drug but I was in a really good place before Aimovig and now I am starting all over.

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    • By eastcoasta

      Aunties- have your neurologist read the fda approval report from the trials. A lot of people had side effects from what I’ve read. But I guess they didn’t deem them significant enough. As well as all the firms out there where people are writing in about their side effects.

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    • By eastcoasta

      Dana
      I am 6 weeks out since my one and only shot and last night had the most severe pain in my shoulder. I can barely move it. Nothing like anything I’ve experienced. The first few weeks I was so fatigued I couldn’t function. Still am dealing with fatigue and migraines that won’t respond to my triptans since the shot. If you are going to try another CGRP drug there are forums on Facebook with people discussing all of them and if they are experiencing side effects.

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    • By Dana

      @eastcpasta
      If you can believe it….in this day and age… I am not on any social media!!!!
      I’m sure I can find other reviews about it out there somewhere. i am going to Jefferson tomorrow to plan for my admission, so I will find out if they want me to do the Emgality shot (I think I spell it wrong every time) or if they will want me to wait until my d/c. I guess it will depend on how soon they can admit me. I’ll keep everyone posted! I feel for you and don’t blame you for stopping the Aimovig. A friend of mine (I met on here), was also having issues after one injection and her doc wants her to try the Ajoy. So definitely follow up with your doc!!

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    • By Dana

      @eastcoasta
      P.s I did all 3 months of Aimovig and got no relief.
      I saw you were talking to someone else about that, so to all of those having those horrible side effects, I had them too and my doc convinced me to wait it out, I don’t encourage you to wait it out. It was 3 months of pure hell.

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    • By eastcoasta

      @dana
      Im sorry you tried it for 3 months and in hell that long. I cant wait for this to be out of my system. I just pray I am not left with any problems after it is out of my system. Good luck with your appointment!!! Hope you feel better soon!

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    • By Dana

      @eastcoasta,
      Thanks, hopefully you won’t have any lingering problems. I am being admitted back to Jefferson for another Lidocaine Infusion, but I also did my first Emgality shot today. The 240mg loading dose. It hurt like a son of a b!tch, but only lasted a minute. I’ll keep you posted on how I feel over the next few days with this one. Hopefully better than the Aimovig! Hope you are feeling better 🙏
      Dana

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    • By adkrauss

      Dana – good luck with the switch to Emgality and the infusion. Unless my neuro convinces me otherwise, I am also done with Aimovig and looking to try Emgality. Had three doses of Aimovig (70mg, 140mg and 140mg) and no improvement. Plus, all the side effects previously discussed. You may have mentioned in a previous post, but how long since your last Aimovig injection before you took the Emgality injection?

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    • By beachmom001

      That’s a really good question! I am trying 70 mg of Aimovig for one more month (2 months of 149 mg already 3rd shot today)and if I still continue with the hip, knee and joint pain and fatigue I will definitely look into switching to Emgality. I still find it mind-boggling that I was in the Aimovig chronic study for one year and didn’t have one single side effect! So discouraging! But I am curious as well as to how long you have to wait before you switch meds? Probably at least one month maybe more?

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    • By adkrauss

      Beachmom – Not sure if you have seen it, but there has been considerable discussion here about the half life of Aimovig and how long until its out of your system. Answer – A LONG time – – like hundreds of days. That being said, I don’t think there is any definitive answer as to how long you should wait. Of course, if you feel like you are still having significant side effects from the Aimovig, additional wait time might be a prudent approach, as much as we all are looking for some relief. I assume Dana got some advise from the Jefferson Headache Center on the issue that I would like to hear, even though she said she hated the place.

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    • By Dana

      @adkrauss
      @beachmom
      @eastcoasta

      I was given the go ahead to take the Emgality after just 3 weeks following my last dose of Aimovig. I will say last night (afew hours after the shot), I felt this wave of exhaustion come over me…..like when you take a pain killer…….I went to bed and woke up fine…as in not feeling fatigued. I still have a migraine, but I’ve been in a cycle since the beginning of October so I certainly wasn’t expecting to wake up cured.

      @adkrauss You asked me why I hated Jefferson so much, well the treatment itself is horrible, you have constant blurry vision, you feel very antsy, you generally can’t get out of bed and move around without help because you are on such a massive amount of magnesium. But you have to just suck that up if you want to feel better. I also didnt have any family with me which made it harder. You can only shower every other day, so unless youre wearing a gown with no bra you’re stuck in you’re clothes for two days (I do have plan for that this time, though!) you can freshen up on no shower days, but doing anything with a PICC line is so hard. I imagine if you had a family member there to help it would be easier.
      But I had issues specific to my stay, I complained on two different shifts that was PICC line was painful and I felt my hand was swollen and my concerns were brushed off, when a doctor came him and I told him, he took one look at my hand and ordered a STAT U/S, I had a DVT, and the PICC had to be pulled(cutting my treatment short), I had a few nurses that didnt wear gloves while handling my line, or clean it, before reconnecting it….totally unacceptable. They were supposed to provide me with a “stress ball” type of thing to squeeze like 10 times every hour to help prevent blood clots, but said they were out and would get me one….i asked everyday and they said every single day, we’re still out…will get you one. In the end I ended up filing a complaint and now I’m nervous because I wonder if they’ll treat me poorly. I know someone who has a horror story worse then mine, but that’s not my story to tell. Then of course I went home headache free, but I couldn’t tolerate the preventative, so the relief lasted not even two weeks…….all that for barely 2 weeks of relief. And if the Emgality doesn’t work it’ll be agin for nothing. Just super hesitant. Although I am the schedule

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    • By adkrauss

      Dana- thanks for all that important detail. I am so sorry to hear what you went thru at Jefferson and deeply disappointed to hear about the sub par care you received. Please continue to report on developments.

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    • By adkrauss

      Dana – No I most definitely do not work at Jefferson and live and work hundreds of miles away in New York. I have tried just about everything short of checking in to a headache clinic and am close to doing so if these CGRP options do not provide relief. I like my neuro alot, but as he says: “i know a lot about headaches, but that’s all they do.” NYU Langone would be my likely first stop. Incidentally, the Google reviews on Jefferson are pretty poor, with most complaining about how you cant get a live person on the phone, nobody returning calls and lack of personal attention.
      https://www.google.com/search?rlz=1C1GCEU_enUS820US820&tbm=lcl&ei=rrXlW5XsEOXojwSWwrDoAQ&q=jefferson+headache+center+reviews&oq=Jefferson+headache&gs_l=psy-ab.1.1.0i67k1j0j0i7i30k1j0l7.30131.35165.0.39219.20.15.0.0.0.0.166.1531.3j11.14.0….0…1c.1.64.psy-ab..8.12.1307…35i304i39k1j0i13k1.0.JhK6emc59J0#lrd=0x89c6c62894fe77ff:0xf411ca750ec9cfc5,1,,,&rlfi=hd:;si:17587060623966588869;mv:!3m12!1m3!1d210.33545085012096!2d-75.1561456!3d39.9480839!2m3!1f0!2f0!3f0!3m2!1i1500!2i845!4f13.1

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    • By Dana

      So I’m 5 days out from the loading dose of Emgality. Wish I had better news, but I haven’t had one ounce of relief. I’ve actually been in bed all day at an easy 8, buried in ice packs and using my oxygen on and off trying to get some relief. I don’t want to over do it on meds. I found just one other website with Emgality reviews and one person said they were a new person in 1 days. So it obviously does work for some, just like the Aimovig, hoping it will kick in, but not holding my breath. But I can report I’ve had NO side effects.
      ❤️Dana

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  • By McNamart

    I am on my second shot of Aimovig and I have had the following side affects: back ache, extreme pain in hip joints, can’t sleep at night, period started after two years of perimenopause, constipation, irritable, out of body type of experience…just wasn’t quite right, and migraines cut way back but when I did get them they were much worse than before. I do not like the side effects at all, I am not going to do any other shots of Aimovig. For me, the side effects are not worth the lessening of migraines.

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    • By eastcoasta

      McNamart-I have been bleeding badly since the shot as well. Ended up in the ER for a ruptured cyst. I have worsening migraines as well that triptans aren’t breaking. First few weeks was extremely fatigued, dizzy, nauseated,insomnia. Still having chest pains and worsened migraines. Now having pain by the pancreas radiating to the back. There’s several forums on Facebook as well where people are writing in how it has effected them. I’m 5 weeks since taking the shot. And I’ve read people haven’t started feeling better until after 3 months. Hope things get better for you. This has and is hellish.

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