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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 Starfire33sp

      I just started Aimovig on December 27, 2018. The second day I had a headache. The next few days were awesome. No migraine symptoms whatsoever. After that I started having pretty bad migraines. Then the insomnia started and I haven’t been able to get over it. And tonight both feet and my lips and head started tingling. So tomorrow I am going to call my neurologist. I figure I am off to a great start…yeah right!

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    • By Nancy Harris Bonk Moderator

      Hi Starfire33sp,

      I’m sorry you are having a rough time with Aimovig. Please keep us posted on your progress.

      You may want to discuss Ajovy or Emgality (two other CGRP medications) with your doctor. These work a bit differently than Aimovig and may be worth trying.

      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 bbass5309

      I’ve just taken my 2nd Aimovig injection. I too experience painful joints etc. It does eventually go away, and the Aimovig is helping to cut down on migraine days and severity. Hope the side effects subside for you too!!

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    • By Nancy Harris Bonk Moderator

      Hi bbass5309,

      Good to hear you are seeing a reduction in migraine attack frequency!! I’ll keep my fingers crossed this continues!

      Will you keep us posted?
      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 Lyn.777

      Hi Dana, it was several months ago that you posted this, but I thought I’d try to check in anyway. Since starting with Aimovig, 2 months now, I’ve had severe neck pain along with migraine. The severity of this neck pain is new. Are you still using aimovig and has the neck pain lessened?
      I haven’t had worsened fatigue with it. Are you feeling less fatigue? Hope you’re better than the last time you posted.
      Lyn

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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 lisev

      I have had nausea daily since my first injection also. It’s been 10 days so I figure I have 3 weeks to go. I have a fairly constant slight ache in my temple, and worsened insomnia. I need to let this stuff get out of my system. I was doing pretty well with Botox injections and neck therapy. Should have let it be.

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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 Melissa

      Mild depression, manic episodes, and panic attacks after 4th injections of Aimovig (140mg). Subsided, so I injected 5th dose of Aimovig. The aforementioned symptoms intensified, and now included suicidal thoughts. Neurologist has advised me to to stop Aimovig. I’m also experiencing many of the physical side effects listed by others: severe muscle cramps, stiff neck, back pain, worsening vision, tinnitus, vertigo, chills, numbness in hand and feet, as well as anorexia, insomnia, hair loss, brain fog, and increased severe headaches. The time between the 2nd and 4th doses was virtually headache free, and side effects were tolerable. In hindsight, I would give up that time to feel somewhat normal again.

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    • By Cammy

      I have had a similar experience. Started out rough with first two months of dizziness and then stabilized but then hair loss,hot flashes and can’t regulate body temperature…my psoriasis that was under control came back and won’t go away… having female issues I never had before-vaginitis and yeast infection problems. Now at 6 months and so tired and fatigued, severely bloated and have had a migraine for a week. Dr said to stop it and felt like withdrawal symptoms when it time for the next shot. Body aches and flu symptoms. Going to switch to Emgality.
      Worry about long term effects on the body. Had great relief and felt like I was getting my life back, but then it went back to migraines and bad side effects that depressed me. Felt like I was on a roller coaster. Hopefully it helps some people, but it really needs more studying

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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 hobbitgirl

      The following might help you evaluate if you are a good candidate to try new drugs. It is based on my experience
      in several clinical trials for new migraine treatments, two for CGRPs.

      1. You need to understand that they test on people who are generally very healthy other than migraines. They are less likely to recruit people who have heart problems, arthritis, diabetes, etc. Which means they may not have been thoroughly tested on someone just like you, if you have those things. Making you a guinea pig of sorts. You have to weigh odds of the unknown against your migraine pain.

      2. They have exclusion criteria related to drugs, otc, vitamins for those applyin to and in a study. You aren’t supposed to take anything new for your migraines during study. Some don’t let you take triptans during, some do. They want your system clear for month or more. So if you are taking other things, stopping and starting things, you need to understand the meds weren’t tested under that kind of condition, again making you something of a guinea pig.

      These are why it is so important to report your side effects.

      3. In some studies, they will not accept migraineurs who had no success with other migraine treatments. (This doesn’t include ‘fails’ because of side effects, just effectivenesd on migraine pain.)They select this way to increase chances they will pass FDA muster. I don’t fault them for this, since these do help a lot of people. But understand that if nothing else worked for you, your chances these will might go down some.

      4. When in study, they do a lot of blood, urine, heart testing, and make you stay an hour after shot to check for immediate side effects. I felt they took very good care of me.

      5. They run a suicide monitoring test every single visit.

      6. They also are supposed to list any and everything that happens to participants during the study. That is why you might see twisted ankle and a lot of other things thatcseem steange and unrelated.

      Some staff write down everything, including my poison ivy rash. However, some staff make “judgement calls,” deciding my sore knee is arthritis instead of injury (from falling down mt, that went away), or eye problem. Sometimes a participant really has to push/fight to get it properly listed, or investigated. In my case, they sometimes really went to bat to get something investigated, sometimes not.

      Either way, they couldnt say there was a causal relationship. That’s another reason very important to post your side effects to FDA.

      7. Quality of results can vary based on quality of places actually carrying out the clinical studies. I found universities and doctor offices had poorer quality control than places set up specifically for clinical trials. You can get that info from feds.

      8. They spent 20 years a millions of dollars investigating and researching CGRPs and other treatments. It’s totally cutting edge. That comes with unknown risks, and you have to weigh them against benefits and decide for yourself.

      9. Good and bad, your experience is important to furthering the science, so Report!

      Be sure to include every other health issue, related or not, every meds, otc, vitamin etc. and try to keep records of dates symptoms appear, changes in migraines, etc.

      Doing so helps further the science, and gives your suffering some purpose.

      ~~~~~~~~

      PS. I was also in Botox studies, and thought the protocols and administration of trials, etc were sloppy and misleading with results showing dubious value, but it helps some….just study carefully before trying something new!

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    • By emi346

      Hi @eastcoasta, I started taking Aimovig about 3 months ago (I’ve had 2 injections) and my hair has been falling out in handfuls for the last month and a half. This has been my only prescription change and I’m similarly disappointed in Amgen’s lack of transparency. I also just had a ovarian cyst, with pain so bad it was mistaken for appendicitis, I was hospitalized and had an Appendectomy, all unnecessarily. You said cysts were a side effect, where did you find that info? I have a doctors appointment tomorrow where and she’s going to report the hair loss to the FDA as a side effect. But I’d love some more facts so I can see if the cyst was as well.
      Thanks so much!
      Emi

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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 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 Diana5

      Jiamm888, HobbitGirl and Neely,
      I would really appreciate hearing more about your vision concerns. Have they resolved? Have you seen an optometrist or ophthalmologist to find out what is happening? I spoke with a very helpful consultant at Amgen, trying to find out if my new retinal problem could be related to Aimovig, and if it was safe to continue Aimovig. She checked and said they have no reports of any visual problems reported by any users. (I suggested she review this forum.) If anyone else suddenly developed epiretinal membrane in the past few months, I would tend to think there was a link … and not just coincidence.
      Thanks for sharing.
      Diana

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    • By hobbitgirl

      I was in the Amgen phase 1 trial, and it only lasted a few months, and I could have had the placebo.

      What I recall is that I was having both floaters, which is common to a lot of people but not to me, and flashers, which is flashes of light in the peripheral vision. It was the second that concerned me, because it is associated with detached retina and ocular melanoma.

      At first, they (not sure if drug company or contractor) did not want to investigate, writing it off as ‘not related,’ but I provided info about other drugs that did not expect eye problems, but had them, including some drugs where the eye problems developed after stopping the drug. At the moment, I can’t remember what those drugs were. So they sent me to an eye doctor.

      Eye doctor saw some sort of infection or something that she had never seen before–which scary to hear. She put me on eyedrops, $300 for a teeny bottle. My recollection is that it did not get better until after a second bottle of drops.

      Keep in mind since that study was a random blind study, nobody knew if I was getting the med or not; if I had placebo, it was entirely unrelated, so the Amgen rep might have been entirely honest about that.

      I later got flashers when I took Topamax, went to a different eye doctor, who did more tests, and concluded that it was something my brain was producing, not in my eye. There is literature about Topamax having this effect, so I kind of thought maybe it just goes along with brain meds. (I didn’t have floaters that time, just flashers.)

      Later, when I was in the Teva study (now called ajolvy?) I was definitely on the med, for a year, just didn’t know if I was getting it monthly or every 3 months. I had no idea problems with that, and had good results.

      I hope that is helpful.

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    • By Neely McCormick

      Diana, I am so sorry to hear about your vision problems. After my nightmare December, I am on the mend – slowly. My eyes seem to be getting better as I am getting better. I did not see a specialist.

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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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  • By karen11

    I took my first shot of Aimovig on 11/5. I started noticing extreme fatigue on 11/12 which is continuing. I have also experienced shortness of breath for the last 2 days. I have had migraine pain all week as well as ice pick headaches and facial and head numbness. Also experienced a general feeling of anxiety. Has anyone found any remedies to lessen these symptoms?? Anyone who have had these and they have gone away (time frame)??

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    • By auntiev6

      @karen11

      My symptoms started going away after 6 weeks. They went away completely after more than a couple of months. I only took one dose of Aimovig (2 injections, 140 mg).

      My neurologist called the drug company after I had the side effects and was told “She must already have the antibodies then.” My neuro asked if they had a test for the antibodies he could administer to his patients before giving the medication and was told no, it was just something they came across in their research. I told my neuro I had filed a report with the FDA and he said good. He notified the drug company and he wanted to encourage the rest of us to file reports with the FDA.

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  • By cuzi

    I’m about 3 weeks in to first dose. About a week ago, I started to get a severe ringing in my ears and a tingling, pulsing sensations in both temples. Anyone else experience either of these?

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    • By Nancy Harris Bonk Moderator

      Hi cuzi and inkedkatlady,

      Thank you for sharing your experiences with us. There are a number of people who are not responding to Aimovig. They seem to do better with Ajovy or Emgality, the other CGRP medications that work a bit differently.

      Something to think about?
      Nancy

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    • By Neely McCormick

      @cuzi YES! I have been dealing with a mild tinnitus for a while now but since Amovig I have been really troubled over this increased noise in my ears. It is awful. I have made the call to stop Amovig. I was due for my third injection the Friday after Thanksgiving. I just couldn’t do it. I just didn’t call the pharmacy to refill. I feel like my life is just spiraling out of control. I am not here to gripe, but I want to share with you all what I am experiencing in total because what you all have shared has been so helpful to me. Ringing in the ears – check. Fatigue – absolutely. I am trying harder than ever to pace myself thru the day and I usually take a break from work around 5pm for coffee (I work in a home studio). More days than not I have to be careful not to fall asleep with the hot coffee in my hand. I nod off so fast it is like I have passed out. By 8pm or so I am so exhausted that I become unpleasantly irritable if I have to put myself out for anything. I am trying to keep up with some light yoga for energy but it is becoming increasingly difficult to do so. My hip pain and now also low back pain is frightening. I had had a hip injury about a year ago (tore a tendon hiking with my dog) but PT seemed to have cleared that up nicely. After the first injection I went back to PT because my hip was hurting again. In no time my other, uninjured hip and low back became more of a problem than the injured one. Now the pain is radiating down my legs and I can’t find a comfortable position for any relief from the pain in my joints and muscles from the waist down. Because of this I am not sleeping well and not enough. The pain wakes me up several times in the night. I have noticed that my shoulders are also tight and painful. The gastrointestinal issues are a whole other universe of woes. Everything I eat gives me heartburn, then a stomach ache, then painful intestinal gas and then I am constipated. I have a whole other cache of OTC meds I take regularly so I can eat and relieve myself. All of this and I haven’t even mentioned my migraines which is why I started all this in the first place! Shortly after the second shot I thought I was experiencing something that might be called relief. But in no time I began to get ice pick headaches but also in the evening I am getting, what I call, baseball bat headaches. While sitting, reading or watching TV it suddenly feels like someone has come up behind me and whacked me in the base of the skull with a bat. I am instantly in high level pain and instant nausea. I am a week out from skipping the 3rd shot and I am experiencing electrical shocks and tingles in my face fairly regularly. My eye sockets are painful and hurt to the touch always. I am also having some upper respiratory symptoms but I am going to attribute that to the onset of winter dryness. I do think the Amovig has reduced the efficacy of my pain meds. I can’t take triptans so I can’t speak to that though I see others complaining of that. I have chronic migraine and it is pretty difficult for me to quantify the frequency of episodes but I have some brush with an attack everyday and for years I have a constant headache. About 2 days after deciding not to take the 3rd shot I had one of the worst migraines I can remember for about 3 days. Nothing in my treatment arsenal helped so I remained packed in ice and a heating pad on my hips and back until it subsided. I feel like in an effort to improve my quality of life with migraine I have taken on the burden of two other chronic conditions. Body pain that is becoming debilitating and gastrointestinal issues that are becoming a preoccupation. I am dismayed that people seem to be experiencing that it takes so long for side effects to recede. I am becoming depressed over just how unbearably miserable I am dealing with all of these body issues when before I had one, that at least I knew how to deal with and had built my life around. I am a mess. I don’t feel like I can deal with this much longer. This has been a terrible couple of months enduring something that I have been pinning some hope on for years now. It was a joyous day when this drug was finally available and now I feel that it has made my life so much worse. I feel like I have been poisoned and am very anxious about how long it will take before the side effects wear off and it is just me and migraine again. So this is where I would sign off with the pouty, frowny emoji if I could.

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    • By eastcoasta

      @Neely
      I am starting to feel better after two months, although my triptans still aren’t working like they used too. I suffered through many side effects from Aimovig. I asked people on the FB forum I joined when and if their triptans worked again. Most replied after 3-4 months their triptans worked again. But what I wanted to ask you was what you mentioned about your hip and back pain. Mine has been beyond excruciating and my lower back feels like it’s goig through spasms. I had an epidural for my lower back two weeks prior to injecting this poison and had relief until Aimovig. I just assumed the steroid injection wore off but reading your post I am wondering if the pain in my hip and lower back is from Aimovig. I have also read on the FB forum that people have stated all their meds they use, not only triptans have become useless. So I am so wondering if the Aimovig also blocked the epidural effectiveness. Don’t lose hope, I know how you feel. I felt the same way and still get so upset about what this drug did to me. Many have said after 3 months they were better. So there is hope. I hope you feel better soon.

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    • By eastcoasta

      @ Neely
      In addition to the laundry list of side effects I also developed a sever pain around my should so badly I couldn’t move my arm for a few days it was like nothing I’ve ever experienced. Also muscles felt torn in legs and arms.

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  • By INKEDKATLADY

    1st injection of Aimovig 9/26/18. Nausea, fatigue, insane bad itching everywhere, especially my scalp. Then developed sinus and respiratory issues. Diagnosed 10/22/18 with strep, infections in my sinuses, lungs, and inner ear. 2nd injection 10/26/18. Migraine everyday since. Dizzy. Fatigue. Winded. Allergist put me on Breo for my respiratory issues. So far so good. But still a month later very congested. I’ve had even after the first injection, horrible panic attacks, like seriously in anxiety mode constantly. Insomnia and migraine pain with fibromyalgia were exacerbated to unreal levels. After talking with all of my docs, I was relieved to hear my neurologist say no more.

    I am super excited for people who’ve had great success with the CGRPs. But for me and my condition I’ll be passing.

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  • By auntiev6

    After my reaction to Aimovig, my neurologist talked to the drug company. Apparently, my reaction indicated to the drug company that I already have CGRP antibodies in my system. This is something they came across in their research but aren’t telling the doctors. My neuro asked if they developed a test for the antibody but was told “it’s just something we found in our research.” Because I apparently already have the antibodies my neuro doesn’t want to try any of the other CGRP meds on me. There are some other different medications coming out in the next year or two that we will discuss trying. I’m personally not too eager to try anything “new.”

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    • By Neely McCormick

      I finally relented and went to my Internist yesterday. I was so overwhelmed by how ill I feel and decided to go try to tease some of this awfulness out with a doctor with a general overview. She took my symptoms one by one and offered assistance where she could. For the constipation she prescribed Lactulose 10mg/2Tbs 2x/day. She did a full panel of blood tests, checked my ears, nose and throat (nothing serious but the PND for which she said to use Flonase 2x/day), did an echo cardiogram just to be sure the chest pains were not heart related. I am scheduled for some other health maintenance tests – like in a checkup. As for the hip, back and knee pain we have hypothesized that perhaps the Amovig has triggered a massive Fibromyalgia attack. Just a hypothesis, not a medical conclusion. She also pulled up some study information while we were talking and noticed some stuff about affecting thyroid function (I think someone else here brought that up). I had a full thyroidectomy awhile back and depend on Synthroid for thyroid function. Perhaps Amovig is interfering with my medication effecacy? It seems to be interrupting other medications (@eastcosta your triptans). After my first shot I mentioned to my husband that how I was feeling was a lot like I did before my thyroid surgery. Beyond that my doctor was perfectly honest and said that she had no substantive answers or knowledge to offer me – we are guinea pigs in all of this. For myself, I have lived in anticipation for 5 years since I found out this study was taking place and that a medication was coming to market. I wasn’t pinning all my hopes on it, but like everything else in my Migraine tool box, I had hoped it might chip away another piece of the struggle. Instead, I am in the throes of something that I thought wasn’t possible – how horrible I feel is overshadowing my migraine. And I am still suffering as many migraines as pre-Amovig and some of them are worse. None of the other symptoms of migraine have improved. Mostly the drug has made the other things worse. As I have said, I didn’t take my 3rd shot which I was due for about 10 days ago. My MD said this is now just a waiting game. Be kind to myself, treat what I can and try to live with what has been wrought as best I can. I am going to resume my botox shots (my neurologist wanted to be able to track the Amovig w/o the botox) and wait for the Amovig to leave my system. I know my neurologist wanted to try one of the other CPRG meds if this one didn’t work but I’m not having it. I feel like my desperation to find some relief from migraine allowed me to enter this science experiment less informed that is usually my way. This mental part of this is something I will deal with in the future. I’m going to stay in this forum, checking in with all you good people to see how it’s going and to report on how the “exit strategy” is going for me. For those of you who are finding this a positive experience, rock on. As my doctor pointed out, the literature says that only 2% of people in the study had these side effects so it is good to hear that people are benefiting from Amovig. I won’t lie, I am discouraged but as soon as I don’t feel like I’ve been hit by a truck from the waist down I’m gonna pick myself up and put myself back together. Hang in there team. Big hug.

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  • By Loren

    I had my first Aimovig dose (70) in mid October, and my second in mid November. Sadly, it didn’t help my headaches at all; in fact they’ve increased in intensity and frequency this month. I’ve had intense fatigue for the past 6 or 7 weeks, to the point where I feel like going back to bed every moment I’m awake! Everything feels like such an effort. I just went to see my GP for the fatigue, and he took lots of blood and an EKG. I didn’t think to mention the addition of Aimovig to my medication list, because fatigue was not listed anywhere as a side effect. Now that I found this forum, I see that some other people are experiencing degrees of this. I’ll have to discuss this with him when I get my test results back. If the Aimovig is the cause, I really hope it leaves my system soon!

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  • By Nancy Harris Bonk Moderator

    Hi Loren,

    I’ve heard others experience extreme fatigue with Aimovig too. I’m sorry you are going through this.

    The other CGRP medications may offer better results as they work a bit differently from Aimovig.

    Keep us posted on your journey,
    Nancy

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  • By Neely McCormick

    @NancyHarrisBonk You say the other CGRP meds work differently. How so? I am so devastated by the Amovig that I am loathed to try one of the others. What can you tell me?

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  • By INKEDKATLADY

    @cuzi do not dismiss the respiratory issues. It is the Aimovig. After my first injection I also wrote off respiratory issues to seasonal allergies because it was October. But when I got to where I felt so bad, I went to my allergist. She said I had fluid in my inner ear that was an infection. I have NEVER had that before. Terrible tinnitus. Infection in my sinuses and lungs and strep. I was so terribly sick I couldn’t get out of bed. Bone pain off the charts. I’ve always had a touch of fibromyalgia with a bad migraine. But now it’s disabling. I too had the brain zaps. I take Paxil CR so I went to my doc that prescribed that and also meds for insomnia, generalized anxiety and depression. He said he does not want me on these drugs. My panic attacks have been paralyzing. I’ve also developed severe pain in my hips and knees. I have no reason for that. Super winded. Looking back, I can now tell that all of this is attributed to the Aimovig. I have learned that everything people are having, I have to. That’s no coincidence. So after consulting with all of my docs, I emailed my neurologist and she said no CGRPs for me. I have also said exactly what you did, I fee like I’ve been poisoned. Migraines have been worse. It wasn’t like that at first. The migraines got worse right at my second injection. Took it and have had a migraine everyday since. I ended up in the ER two nights ago. Toradol, fluids, and Benadryl. They turned off the lights but I started feeling a hot sensation in my ears. I called the nurse and when they turned on the lights, I was covered in red welts. So, then they had to give me steroids. Fun times. Said no one ever. I too am heartbroken that this didn’t work but I refuse to be bullied or told to try the others. Our bodies and brains are unique so it’s great for some but not all. I can’t help but wonder if they tested people that do not have other underlying issues. Hang in there. I’ve been super depressed over the weight gain and who wants to work out when one is hurting all over. But today is the beginning of getting my body back. Fortunately it’s a beautiful day so I made myself get up, when normally I’d stay in bed all day, and went for a walk. It’s helped me so much already. Cured? Hardly. And again, today was exceptional. Last Saturday, I could barely walk so I was bedridden the entire weekend. I love migraine.com. I have relied on this site for years. And I suggest it to everyone I talk to that has migraines. Stay the course my migraine warriors, we’re here for each other. Gentle hugs.

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  • By eastcoasta

    I read the FDA approval report online. Many were excluded from the trials. And many had side effects and dropped out of the trials. I went through hell for two months with side effects. Just starting to feel better. But my triptans are still not working like they did prior to this poison. There are also forums on Facebook with several people writing in about their side effects. I can’t wait for this poison to be out of my body which with the long half life it takes a total of 196 to be out of your system.

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    • By Nancy Harris Bonk Moderator

      Hi eastcoasta, INKEDKATLADY, and cuzi,

      The thing about the trials is they don’t include anyone who has other conditions. So we are beginning to see possible adverse events in those who have comorbid conditions.

      I find this VERY frustrating.

      Nancy

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    • By eastcoasta

      Hi Nancy
      Yes we are the second trial, guinea pigs. Reading the fda approval report there were side effects and people dropped out because of them. Also the same percentage of people that experienced constipation in the trials ,the percentage was the same who experienced muscle spasms and cramps. And they just recently updated those side effects. I just wish they had listed all the potential side effects so people would be Informed and not blind sided by all these side effects. If I had known I personally would not have injected this drug and had to go through months of a hellish experience. Thank you for having this forum.

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  • By INKEDKATLADY

    VERY frustrating at the least. I’m thrilled and praising God for those who are getting relief. Beyond overdue. Praying they continue to do good and that this is the beginning of more discoveries. Never give up. But as I try to get people w/o migraines to understand, who REALLY knows the brain? No one. As different as a fingerprint. Always keeping in mind, we have put men on the moon but still cannot cure the common cold. Hang in there sister.

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  • By Neely McCormick

    @inkedcatlady I just read your post to my husband and he asked, “did you write that?”. Sounds like my life to a tee. I am taking your advise on the upper respiratory situation. I have wondered if the worsening of the tinnitus was due to some fluid in my sinuses/ears. I will have it checked. I have also had brain zaps, reminiscent of when I went off Effexor. Scared me. I too am not sleeping and my depression/anxiety is heightened. AND I have gained weight and can’t work out. @eastcosta I am panicked and dismayed that you report the half life of this stuff to be 196 days. Where did you find that info? I was comforting myself with about 90 days till some recovery (not sure where I got that number). Glad we have this place for support. This would all be waaaaaay more troubling and frightening without you kind people.

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    • By eastcoasta

      @Neely
      The drug has a half life of 28 days, so after 28 days half of it has left your system and every 28 days it has another half life. You can use an online calculator for a drugs half life.
      So if you did 70mg injection in 28 days it would be down to 35, after another 28 days down to 17.5, and so on. See link below.

      http://www.drugsdb.com/resources/drug-half-life-calculator/

      Trust me when I learned that I went into a complete panic. I had no idea it was in the body so long. I started to turn a corner after 8 weeks. I am 9 weeks since my only 70mg shot but still having excruciating pain in back and hip, and triptans not working as effectively. There are tons of people on several forums on FB that are discussing all their side effects as well. Thank god I didn’t lose my hair, some have said they’ve lost half their hair. Most people stated they were 75-90 percent better after 3 months.

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  • By spriest

    I started aimovig in oct and had the worst calf pain ever and until now never connected it. Only reason I am still taking it is I ended up getting my botox the same day as my injection and had a migraine and within 30 min it was gone. Came back a few hours later but something happened that actually have me relief that has not happened in over a decade. If the muscle joint pain are associated I will have a hard time staying in it. I will agree the fatigue is pretty unbearable and I know that is definitely the aimovig.

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  • By INKEDKATLADY

    Indeed! I love the community here. Sad that it takes something like this though. Yes, so after I finished the antibiotics my allergist said she’d prescribe me Breo for my respiratory. It’s typically used for ppl with COPD. But, Aimovig has been known to cause that. She said she didn’t want to get me on any steroids until we/she knew more about the interractions. I know what those “zaps” are like because I took myself off of Effexor once (I don’t advise this) and it was horrific. Got my Paxil back. Whew. But, I told my psychiatrist that writes the scripts that I’m having those zaps and I’m taking all of my meds! It seemed to trouble him. Told me to let him know if it got worse. I also take clonazapam for my anxiety. But I never really had to take it a lot before this. Now, thank the Lord, I have it. I try to use grounding techniques when it happens. Remind myself to just breathe and bring myself to the present surroundings. Helps a bit. Not seeing my neurologist until end of December. I truly hope it’s out of my/our systems sooner as opposed to later. Managing to get up and take a relaxing walk this morning truly was beyond helpful and what I needed. I just paced myself. I’m going to try to make this a daily habit, weather permitting. Hang in there sister. We’ll make it. Migraineurs are some of the strongest people in the world having to deal with all we do.

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  • By Lyn.777

    Well folks, thank you to those who have offered sympathy and suggestions. To those of you struggling, I’m sorry, migraine is enough, without side effects from a much hoped for new drug.
    To those suffering…could you leave out some of the details and shorten your entries? I’ve been getting overwhelmed and discouraged with the lengthy reports.
    Thanks 🙏🏼

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  • By Diana5

    I have had great relief from Aimovig: previously had 8-18 days of migraines/month, but only 1 migraine in the past 2.5 months with Aimovig! I have serious constipation since month 2. I have noticed tinnitus lately, and had not previously linked it to Aimovig. I also get those nasty neck pains… maybe allodynia? I find that triptans relieve the neck pains. A week ago my vision suddenly became significantly worse in one eye … with all the symptoms of a retinal hemorrhage; although my optometrist says there is no evidence of retinal damage. Are there any reports of vision changes with Aimovig?

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    • By Caviaxxx

      Yes, I am still in the quitting process (last injection in july, but feel that it is still in my system), but so scared that it broke my vision! Almost cannot see anything.

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    • By Neely McCormick

      @diana5 and @caviaxxx i am a jewelry artist and My work is all very small and close up. For about the last month I have been struggling to get the magnification in my optivisor right and last night I was having a real problem with the TV. I am begonning to think it is related to the Amovig. I feel like all mu side affects are getting worse since I’ve stopped the medication. I had this reaction to Topomax. Took a couple of months to resolve.

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    • By Caviaxxx

      @Neely, thank you so much for this response! I am so scared of losing my sight. Indeed it is getting so much worse since stopping monts ago. Like you say, I also had the same with topamax, not the sight, but all the effects that got so much worse after a couple of months after quitting! Are you also so scared? I so hope that my sight will return. Months is a really lomg time. Especially since I am mentally not ok after a serious disease (which I think was also caused by aimovig).

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    • By Neely McCormick

      @caviaxxx Yes, I am afraid. As an artist, my eyesight is everything. Yesterday the nerve pain in my left hip and back became so severe I really started to panic. I couldn’t get myself in any position to relieve the pain in my right hip and leg. Today, I am in bed with ice, heating pad and painkillers waiting for the neurologist who is covering for my doctor – who is on vacation- to call me back. It’s hard to keep your mind from wandering and wondering if this is just temporary. Stay strong (as only a migraineur can do).

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    • By eastcoasta

      @Neely
      I have been having severe pain in my left hip and back and for weeks and thought it was an issue I’ve had with my back. I’ve been in complete agony and in tears as I can’t tolerate pain meds. I am going completely insane with pain. I’m 10 weeks since I took my only shot and thought I was getting better but haven’t felt good this week and in bed all day today. How long have you been off it? I can’t wait for this poison to be out of my body.

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  • By pwrnapper

    I’ve been on Aimovig since it’s inception back in May, 2018 and currently taking the 140 mg dose monthly. I’ve noticed severe constipation, renal issues and increase in my Peripheral Neuropathy pain. While my migraines AND my Cluster Headaches have disappeared (I was Chronic and getting 4-5 per day) I wonder if the side effects are worth the benefits? I’ve tried just about everything to resolve these side effects with little success. Anyone find a solution to resolving these side effects other than stopping the Aimovig treatments?

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    • By Diana5

      For the constipation, I have been taking fiber supplements, niacin, cape aloe, prunes and prune juice, probiotics, and stool softeners. But drinking “detox tea” or “slimming tea” with Senna is the most effective. Just have to be careful about not drinking too much.

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  • By Nancy Harris Bonk Moderator

    Hi pwrnapper,

    Thank you for sharing that with us. We hear from MANY people on Aimovig that constipation is a real issue. I had an issue with severe constipation while taking taking methadone for chronic pain a number of years ago. The only that worked was 1 tablespoon of Yakima Fruit Paste each night before bed; http://www.cancerlynx.com/fruitpaste.html.

    Keep us posted on how you are feeling,
    Nancy

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  • By shaybug4

    I just took my 1st dose of emgality 2 weeks ago.. it was a loading dose the 1st month since the I have had horrible joint pain especially in my ankles and wrist.. is anyone else having these symptoms and if so what are you doing to make it better

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  • By Nancy Harris Bonk Moderator

    Hi shaybug4,

    Sorry to hear you are experiencing joint pain but thank you for sharing that with us.

    I’ve heard from a few people who have similar symptoms after taking this medication, it seems more so with Aimovig.

    Hopefully these symptoms will lessen as time goes on and you get more relief.

    Will you keep us posted?
    Nancy

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  • By Diana5

    I wonder if there is any similarity in action with Topomax … since some of us who had problems with Topomax are having side effects from Aimovig. Seemed a totally different mechanism. Woke with bad migraine today … but only 2 in 2.5 months on Aimovig, so life is better. I do worry about the blurred vision. Do I really have to choose between pain and poor vision?

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    • By Neely McCormick

      @diana5
      I agree that some of the side effects w/Amovig are similare to Topomax even though they are very different drugs. I guess they a both targeted at the brain with Topamax being a seizure drug but it certainly is discouraging that everything available to us has a lesser of two evils factor. I took Topomax for a year and for the first and only time in my life I was nearly pain free. However my bision got so progressively worse that my opthomaligist insisted I stop Topamax. Not worth going blind for. On the brighter side it is bery exciting that you are having migraine success with the Amovig. Good luck!

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  • By Diana5

    Just checked online, and Topomax does reduce cgrp production … so we could see similar benefits or side effects. For me, both worked, but both affected vision and caused tinnitus. Eventually topomax caused awful

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  • By tallguywithmigraine

    I’ve been on Aimovig for six months now. I haven’t noticed any major side effects other than constipation, which is manageable.

    For the first 3-4 months, my migraine frequency was down about 75%! But during the last two months, the migraines have increased, unfortunately. My neurologist just recommended taking the higher dose of Aimovig. We’ll see how that works.

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  • By Diana5

    I am curious what kinds of visual disturbance others are experiencing. I am not convinced that my recent problems are related to Aimovig, but the optometrist now wants me to see a retinal specialist, and the neurologist wants me to stop Aimovig. It feels like a terrible choice, because life is so much better without migraines!!!

    I have been having:
    * blurred vision in one eye, worse in the morning
    * tree-like shadow of retinal blood vessels showing up with any light source: tv, window, cellphone
    * blotchy hello-gray haze apparent when looking at a solid color

    For those of you who stopped injections, how long before the side effects dissipate?

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  • By DRoddington

    7 weeks since first 140mg dose, 3 weeks since second 140mg dose. It hasn’t been of much help with headaches but it has produced constipation and severe lower back pain. Also, and most concerning, I’ve had a strange onset of Raynauds phenomenon that began a few days after the first dose. Extreme coldness, numbness, and loss of color in my hands and feet after exposure to even slight amounts of cold. I iced my hand after a thumb injury a few weeks ago and nearly passed out when I removed the ice pack. I’m normally very cold tolerant and often work outside in the winter without any trouble form the cold. I thought I’d share since this is not a common effect, but perhaps others have experienced the same. Since cgrp does play many not yet well understood roles in the body (one of which is in thermoregulation) I’m convinced the Aimovig is the culprit. I won’t be taking any more, and I hope this wears off soon. Thanks for the info on the half-life.

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    • By Esme

      DReddington,

      I have also had Reynaud’s-like numbness in my hands since starting Aimovig. It happens when I am outdoors for longer than 20 minutes in weather below 48 degrees; onset is sooner if it’s low 40s or less. Never happened before Aimovig. However, Aimovig has been a big help as far as reducing my headaches, so for now I’m willing to wear heavy gloves and use hand-warmers. I am also having low-back pain and stiffness which I’m not sure is related to Aimovig, as I’ve had back issues before. I have had 3 70mg doses starting mid-September.

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  • By hobbitgirl

    I was in the Phase 1 clinical trial for this and Phase 3 for a different company.

    In the first Phase I study (I was I think the 400th human to try it, a bit scary) not knowing what I got, I was not only pain-free for a month, but also felt a burst of energy. When it “wore off” I was depressed….because the migraines returned so quickly.

    In the Phase 3 Teva study, I was definitely getting the med for a year, but didnt know if it was 1x/mo or every 3 mo. I went from 28 migraines/mo to 4-10 less intense, less duration. For first time in 29 years, I felt I had real breaks, which helped me better understand all phases of my migraines. Others in trials said same.

    Sometimes I seemed to have most of the migraine symptoms, without the pain…that was fine by me.

    Sometimes it felt like a migraine was knocking at the door, trying to get established, but never did. Others said same.

    There were only a few “maybe” side effects:
    – I developed a painless lump on hand. At first, they thought maybe
    Cancer, but it wasnt. They thought, maybe from previous injury, but was none. I figured a couple bone lumps was price for 24 fewer migraines that was cool.
    (Early on, the researchers thought increased bone density might be a side effect). So watch for that, repirt to FDA.

    – After the year was up, I suddenly had shoulder, knee and foot injury type pain. I had fallen on a mt 3 months before, with no pain, so I wondered if it had masked the pain. That was a concern the researchers had about the meds, so watch for that and report to FDA.

    -it also seemed like I couldn’t get sick while on it. Twice, I gad days when for a few hours I had full-blown symptoms of the flu, or stomach virus–for all od 2 or 3 hours, then completely vanished. Another participant had similar experience. How cool it would be if this med cured a LOT of illnesses….so be on watch for this, and report!

    -In first study, I developed I flashers (different from floaters). That can be sign of separating retina, or optical melanoma. Thankfully it was neither, but was some kind of eye infection that they’d never seen before; the flashers seemed to be brain thing, rather in eye. Had same thing on topamax. So if you get that, report to FDA.

    – My migraines have continued to be of less intensity and duration, although still tiring and frequent in heat/humidity. Others in trial said there migraines went away and stayed away after study ended.

    I had the feeling if I quit it, and then returned after several months, maybe it would knock it out for good.

    Alas, I stopped working because of the daily migraines, making me too poor for obamacare, and I live in state that did not expand medicaid, so while I risked my health/life as an early trial participant–when they really didn’t know what side effects would be–I now can’t afford them.

    Still, I am happy to have helped further the science, to have been part of helping others. That gave my migraines some purpose, at least for that time, and I’m glad of that.

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    • By tallguywithmigraine

      Dear Hobbitgirl,

      Thanks for sharing your experience, and for volunteering for the clinical trials! Aimovig has helped me tremendously during the past 6 months that I’ve been on the medication. I’ve had incapacitating chronic migraine for the past 14 years and was waiting eagerly for these new drugs to be approved. I’m grateful that you helped make that happen!

      Very sorry to hear the meds are now inaccessible due to cost. I know that Amgen had some very generous programs for Aimovig- perhaps they could help you? I believe information on these programs is available on the Aimovig website.

      I hope and pray your find relief soon.

      – Sean

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    • By Diana5

      Hobbitgirl,
      Amgen has a very generous program to cover Aimovig for individuals who have no insurance, or whose insurance does not cover it. I get my monthly injections for free. Emgality and Ajovy, I believe, have similar financial support for those who do not have coverage. They are pretty easy to sign up for online.

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  • By kanhow

    Aimovig has been life changing for me in both good and bad ways. I started taking it in July 2017 (70mg) and moved up to 140mg in November. As a childhood migrainer who typically had some type of migraine almost every day, this medication has made a difference in my life. I have many more migraine free days than before.

    Having said that, I noticed starting in September that I was getting some pretty severe upper respiratory infections that lead to resistant sinus infections. I have also had strep, viral tonsillitis and laryngitis. As a typical normal healthy woman, I noticed the infection would occur days after my injection. Obviously my immunity is down. I came to this site to see if others were experiencing something similar.
    Best wishes,
    Kandy

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    • By Nancy Harris Bonk Moderator

      Hi kanhow,

      Thank you for reaching out an sharing your story with us. I’m sorry to hear you’ve dealt with so many other issues. Do you think it’s connected to Aimovig?

      Nancy

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  • By emi346

    Hello,
    I’ve had 2 Aimovig injections (supposed to take my third today) but I’ve been loosing handfuls of hair over the last month or so. It’s been my only change in medication or treatment, and has been quite unnerving. I also recently had horrible abdominal pain, so bad that it was mistaken for appendicitis, I was hospitalized and had an Appendectomy; but it was because of an ovarian cyst. I’ve read (from their studies and from other migraineurs) that these are both Aimovig side effects. I have doctors for both, ensuring future care, but I never would have taken Aimovig if I knew this could happen. Has anyone else had hair loss or ovarian cysts?

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    • By Nancy Harris Bonk Moderator

      Hi emi346,

      Thank you for reaching out and sharing your personal journey with us. It’s always good to know we’re not alone.

      I’m sorry to hear about your hair loss. We’ve heard from a number o people they are experiencing similar things with hair loss. You may want to report this to the FDA adverse events site? Here is the link if you decide to; https://www.fda.gov/safety/medwatch/howtoreport/ucm053074.htm

      Keep me posted on how you are doing, OK?

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    • By Karen

      Hi. Just wanted to add that after 4 months of 140mg Aimovig my migraines got so much worse each month after injections for about 2 weeks. Horribly worse. I also got severe anxiety symptoms for a week after each injection. And the hair loss!! OMG!! Clumps falling out I’m afraid to touch my hair! Just switched to Emgality. I hope the hair loss stops! No anxiety after injections and no worsening of migraines after injections. Not sure any improvement tho. If hair loss continues I give up on CGRP meds. Not worth it.

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  • By MrsShamsey

    I have taken 2 doses of Aimovig and have noticed I am quite depressed and can’t really find any genuine information on if its linked or not. I tend to always feel depressed around the holidays due to losing my Dad about 7 years ago but this feels different. I am not suicidal as I have been in the past with this seasonal depression. Not this time though (which is an upside!). I have had panic episodes over silly things. Like the other day I had a mental breakdown at the grocery store over which chips to buy! I have gained about 15 pounds since starting Aimovig (probably unrelated but makes me more depressed). One other thing is I started a new job about 3 weeks after starting Aimovig and absolutely despise this job! My manager seems to think my migraines are a joke and an excuse to get out work. Unbearable! Otherwise I feel I’m still having a good amount of headaches and migraines BUT they go away much faster than before and respond to treatment very well! Just wondering if anyone else is dealing with depression directly related to the aimovig or if it’s maybe just overlapping for me.

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    • By Marci Kallick Moderator

      Hi MrsShamsey,

      Thank you for reaching out and sharing your personal journey with us. I’m so sorry to hear that you are experiencing symptoms since starting Aimovig. Thank you for your question asking if depression could be related to starting this medication.

      While we can’t provide medical advice via the internet (for your safety), we do encourage anyone experiencing new or worsening symptoms to talk with their doctor as soon as possible, to rule out any other possible underlying causes.

      Additionally, this article on depression symptoms might be of interest to you:
      https://migraine.com/living-migraine/uneasiness-feeling-better-cgrp/

      I do hope this helps -and please keep us posted on how you’re doing!

      ~Marci

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  • By Snowbunny

    bunny 1 day 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.

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  • By Snowbunny

    Update: I started my 1st loading dose of Emgality on Dec.19th. My legs are starting to improve. The muscle cramping and the feeling of “carrying bowling balls inside both legs” seems to be slowly diminishing.

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    • By Nancy Harris Bonk Moderator

      Hi Snowbunny,

      Good to hear the pain and cramping is starting to improve, that must be a relief.

      I’ll keep my fingers crossed Emgality is the medication for you!!

      Please keep me posted,
      Nancy

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  • By Deb Carpenter

    I just had my first dose (140) of Aimovig 2 weeks ago. It did help stop a 6 weeks long migraine. The side effects of it have been severe muscle cramping in my legs at night and stomach cramping and constipation. I don’t feel very good. Not sure I will continue with the Aimovig. My neurologist said the GI symptoms should pass. We’ll see.

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    • By Diana5

      Hi, Deb. I am sorry it has been so uncomfortable. In 3 months, the constipation has not resolved on it’s own. You may want to experiment with prunes, stool softeners and sienna etc. to figure out what works for you.

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  • By Nancy Harris Bonk Moderator

    Hi Deb Carpenter,

    I hope this adverse side effects pass quickly. Try not to get too disappointed, there are a few other CGRP medications that work slightly differently than may be beneficial if Aimovig isn’t for you.

    Keep us posted!
    Nancy

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  • By margie9571

    i tried aimovig in october and had horrible side effects-stiff neck,so sick to my stomach,very dizzy,headaces were more intence and i had shooting pain with them, and also broke out with 2 rashes one was gone the next day the other took about 3 days to clear up-i was not going to give up on this drug for i have waited a life time for somethng like this to help with my every day headaces i have had since i was 9 years old so i took another 140mg in november and had the same reaction except no rashes but was so sick-than came december and i decided to take just 70ml but nothnig realy changed and the headaces were still worse than ever -i think it woud be in m best intrest to discontinue this drug

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  • By gmi2020

    This is an update to my previous post on Aimovig. I am now 15 days after the first shot and my blood pressure which was not an issue and was well controlled on BP meds is still very high for for me. I have been 14 days without a headache and only had a mild one last night which was easily treated. My BP is still very high at 150/95 or so. I will not continue on Aimovig but it has helped my headaches if it don’t kill me.

    I read the FDA study and someone like me with my health on meds for HBP) and age (64) would not have been in the study.

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  • By Nancy Harris Bonk Moderator

    Thanks for the update, gmi2020 .

    These CGRP studies included people who had migraine disease and not much else. I believe this is why we are seeing adverse events, just like other studies.

    Nancy

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    • By Neely McCormick

      @NancyHarrisBonk
      Based on my own experience, I believe that is so true. I think that those of us with compound issues (Fibromyalgia, auto-immune, neuropathy, etc.) that often accompany migraine are the people that are experiencing complications. I was not able to get into the study at Lilly and I believe it was because I had accompanying issues. Perhaps this is a place where the drug companies and health practitioners can look in order to avoid causing some people harm.

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  • By Neely McCormick

    Hi all. Happy New Year. Sorry I dropped out of the conversation but I have been on quite a journey since my last post. I wasn’t sure my experiences were relevant to this site but now that I have a bigger picture I want to share my experience. I want to offer “just the facts” but as you all know, this experience with this medication is very emotional.
    So – I think my last post was that I was/had seen my primary care doc as my symptoms – hip pain, nerve pain in legs, fatigue, constipation, increased tinitus, vision problems and on – were just getting worse and I wanted to rule out other potential cause/causes for this. I told her I believed how I was feeling was due to Amovig. She pulled up the side effect page on the Amovig site, read them and told me what I knew, that none of those things were indicated by the drug company (duh). In her defense, there is no information to refer to so she decided to do extensive blood work in order to rule out infectious disease. That was Monday.
    On Tues., my pain took on a very intense and different character. It was clearly nerve pain from the waist down. I couldn’t get comfortable in any position – sitting, laying down, sitting up in bed, feet up, feet down. It was just an ongoing struggle to try to relieve horrible pain and I grew more frightened and frustrated as the day went on. I called my Neurologist, he was on vacation and I spoke to the doc that was covering for him. She was sympathetic but of course she couldn’t diagnose me over the phone so she called in a script for Gabapentin and high dose Naproxen to try to make me a little more comfortable until my doc returned to the office. My husband and son wanted me to go to the Emergency Room but the thought of that experience was just too daunting.
    Wed. I was totally miserable and barely able to walk. My husband stayed home from work and we kept me packed in ice and heat, whatever gave me some relief. I took the meds from the doc and my hydrocodone that I have for my really bad migraines. I felt like I would loose my mind and continued to just cry spontaneously (that’s soooo not me). I would move and literally burst into tears. I felt I had no control over it. There was no choking it back – it just exploded out of me. That night, (early Thursday morning) I woke up to pee and I was paralyzed, COULD NOT MOVE, and in the worst pain I had ever experienced in my life. Being migraineurs you can understand the gravity of that statement. I told my husband I felt like I did when I had Spinal Meningitis. After being awake for awhile I was able to stumble to the bathroom with the aid of my husband. I was sobbing, struggling and couldn’t imagine leaving the house to get help. I medicated myself as well as I could. Heat, ice, compassion and support from my husband I got through the night and by Friday morning the episode was on the wane. Later that day, my PC doc’s office called and told me I had tested positive for Lyme and Epstein-Barr and I needed to begin antibiotics right away. I was shocked, curious if that was the right explanation and in my heart of heart, not buying it.
    I began the antibiotics and was scheduled to see my own Neurologist the following Friday. During the course of that week I recovered enough to sit up in bed, read some, check email, etc. I continued the antibiotics that were now making me feel worse in a different way, and address my pain, that remained at about an 8 most of the time. My Neurologist gave me a comprehensive exam, retested the Lyme at his hospital in NYC and sent blood to Stonybrook University which has a dedicated Lyme lab. He also ordered a brain MRI and told me to continue the antibiotics until we knew for sure it was Lyme. He was also not convinced and we discussed the episode I was identifying as Meningitis at length.
    I had the MRI and 10 days later (the Stonybrook test takes over a week) my Neuro called to tell me that I absolutely DIDN’T have Lyme. Both tests were negative and the MRI showed no evidence of Lyme. There was some evidence that the menges around the brain had been irritated. We discussed this whole story further and his conclusion is this (the purpose of subjecting you the reader to all of this information)
    He believes I had an allergic reaction to the Amovig. I have autoimmune disease and perhaps that made me more vulnerable to such a reaction. He also believes that I did in fact have Meningitis (he said no one would use that descriptive unless they had had the disease – there is nothing like it) and he identified it as Septic Meningitis caused by an allergic reaction to Amovig.
    Now, I have basically cancelled my life for the next couple of months. I am still in constant and often debilitating pain from the waist down and can rarely find physical comfort. I am depressed and anxious. The thigh of my left leg is totally numb and when I have been asleep for a few hours and my leg hasn’t moved I wake up with the feeling that my skin is being ripped off, I reflexively call out in pain and it takes 30 or 40 seconds to get off the bed and standing. Then it feels like I’ver been burned for quite some time after. I’m on the heating pad all the time and ice my legs most of the time, wherever it hurts. My ears ring constantly and I have had a low grade migraine since the late night episode which is a consequence of Meningitis and of course, the reason all this has happened to me – I have Chronic Migraine! I’ve shared these details, only because your sharing has helped me and I want to return the help. I will check in now and then and certainly want to know how all of you are doing. My Neurologist said the medicine will probably be in my system and affecting how I feel for about 6 month and add to that, the recovery from being sick. I’m crushed, angry and depressed. I had a lot planned for the New Year and now I will be spending lots of time on my new mattress and hanging around the house. This is not what I thought I was getting into with Amovig.
    For those of you that are having success, this post has nothing to do with you. I am thrilled for those that are having success and I’m sure that is a large sector of users. I’m speaking to those that are having trouble. Lastly I want to say that my Neurologist was against my starting this medicine and it was only because of our long and trusting relationship that he acquiesced. He doesn’t like to use his patients as guinea pigs for new meds.

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  • By Nancy Harris Bonk Moderator

    Hi Neely McCormick,

    Oh boy, I am so very sorry you are going through such an awful time. Thank you for taking the time to share this with us, it’s important information to know.

    My fingers are crossed your recovery goes quickly and smoothly.

    I hope to hear from you again when you’re up to it.

    Happy New Year.
    Nancy

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  • By Diana20

    Blurred vision – After my third Aimovig injection, I suddenly developed blurred, distorted vision in one eye. I finally got in to see the retinal specialist today and learned I have “epiretinal membrane”, which causes distorted vision, it gradually gets worse, and eventually requires surgery. He could not say whether it might be related to taking Aimovig. Usually it comes on quite gradually, and mine appeared suddenly.

    If you have developed significantly worse vision, I would encourage you to have your eyes checked. If this is related to Aimovig, we would want Amgen and the FDA to be aware.

    Still deciding whether to proceed with more Aimovig …. because it works wonderfully to reduce my migraines!

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    • By Nancy Harris Bonk Moderator

      Hi Diana20,

      Thank you for sharing that with us. It could be a coincidence – I’ve not heard this before. I hope the vision improves.

      Will you keep us posted?
      Nancy

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  • By cash80221

    I have had 3 Aimovig injections (70 mg) so far. I saw an immediate reduction in migraine frequency, going from 4-6 days a week to only 4-6 days a month! HOWEVER…..those migraines are now among the very worst I have experienced in my 20 years of chronic migraines. And by this month (3rd month) triptans are almost totally ineffective. I had 3 migraines this week and every one required two doses of triptan before it FINALLY eased off. This is a very rare thing for me. Add this to severe heartburn, muscle spasms, shortness of breath, heart racing, severe constipation, dizziness, nausea, etc., I have decided it’s time to “pull the plug” on Amiovig. Thanks to everyone for sharing your experience with Aimovig. It helped me realize I’m not imagining things! Like the old saying goes, “If it sounds too good to be true, it usually is.”

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  • By jamiezac

    I just started Aimovig 140 mg in December 2018, actually my first shot was 12-31-18, and at first I was feeling very pretty good. My migraines decreased as well as my cluster headaches. However, after about 4-5 days, I’ve been suffering from severe fatigue and depression. I feel like falling asleep at any moment. My eyes are constantly closing and I feel so incredibly relaxed that I feel like I’m back on Stadol or 180 mg of Oxycontin along with 80 mg of Roxicodone. My former nuero had me so drugged up I couldn’t think. I believe I now know how someone with narcolepsy must feel. I read many of the posts on this forum and found that I’m not the only Aimovig patient who’s suffering from profound fatigue. I’ve called my doctor’s office today to report my side effects. I’m hoping that I hear back from his office tomorrow. Although, my migraines have almost disappeared, my cluster headaches have not been effected — they’re actually becoming more prevalent, but the pain has lessened because I can just lay down and fall asleep while the cluster headache runs its course. However, I used to get about 8 hours of sleep every night and feel awake the next day. Now, I’m having trouble waking up after 12 hours of sleep. Ugh!

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  • By mrabb

    Hello! Have you experienced worse migraines from Aimovig? Mine seem to have gotten worse. I can’t seem to get rid of it for over a week after I upped my dose to two. I asked my doc and she said it wasn’t the Aimovig. Thanks!

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  • By beachbumgirl

    @mrabb
    After watching my migraines for 6 months on Aimovig, my specialist noticed my migraines were WORSE on it! So,
    this month I go to Emgality.
    Just wanted to share it can happen.

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  • By terrib1000

    I only took two shots of Amivog. My pain almost doubled. I chronic daily headache that breaks through with migraine 4 to 6 times a day. On Amivog I was so much worse. I will not be taking any of these again.

    I started doing more searches and went to the fda website to read what was done in the clinical trials. The numbers there were 20 percent got relief and 12 percent got relief on placebos.

    There is a June article talking about a Amivog amout the fact that it’s only going to one patient out of 6.

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    • By mrabb

      Oh gosh that’s horrible. I asked both my doc and pharmacist and they said Aimovig doesn’t cause increased migraines. But I have had a migraine that won’t go away ever since the last shot. Frustrating because I’m not sure what to do about it if the doc thinks it’s unrelated and meanwhile it’s very difficult to work. Thanks for the info!

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  • By terrib1000

    I talked to my neurologist and so far i’m the third patient she has with increased migraine pain from Amivog.

    I ended up in horrible pain for 3 months. I thought it would get better when the shot wore off. For me it didn’t.

    I was desperate. I saw my neurologist and she got me into their infusion clinic. I finally got releif.

    Only one in every 6 people are helped with this medication. I will never take another one of this type of drug.

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  • By Nancy Harris Bonk Moderator

    Hi Karen,

    I’m so sorry you had a bad experience with Aimovig. I’m keeping my fingers crossed things work out better with Emgality – please keep us posted!

    Nancy

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  • By wao618

    Hi. I’m so glad I found this today. Took Aimovig 70 mg three months and nothing- except my daughter noticing I would get a bad migraine later that day. So four days ago I took 140 mg and was very nauseous all day but felt ok Sun. Then yesterday I could barely get out of bed, went to work for a few hours, left and literally slept for 14 hours. Woke up again this am feeling same way. Took the day off work. I do not have the flu nor flu symptoms other than severe fatigue and nausea. I also found that another side effect recently discovered is immunologic: antibody suppression. Finding out that was enough to make me vow to never take it again much less how I feel now. AND I never got any relief from my migraines.

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  • By Nhtc@tra

    I have had chronic daily headache for more than 20 years and started taking Amovig in September. The first 3 doses were really beneficial in reducing the severity of my baseline and frequency and duration of acute headache peaks. Since then, it has been less and less effective. This month has been terrible– my baseline is much worse and I am stuck in a bad headache cycle that won’t break. The nausea is overwhelming and I am experiencing a lot of dizziness, cognitive interference, and insomnia. Not sure what is just bad headache and what is due to medication- the old problem with chronic migraine- but it seems that much of what I am experiencing is similar to what others are going through.

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    • By Neely McCormick

      I too have had a chronic baseline headache for decades and it intensified while I was using Amovig. Now that it is nearly 2 months since my last injection I am sure the medication intensified the headache. My whole experience was pretty bad as I have accounted here but I wanted to share with you that I have been experiencing some of the worse insomnia in my life. I saw my Neuro yesterday and he posited that the medication may well have disrupted my melatonin production. He recommended taking a melatonin suppliment for a month or so to help my brain reset.

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    • By Nancy Harris Bonk Moderator

      Hi Nhtc@tra,

      Thanks for sharing your journey with us. I’m sorry Aimovig doesn’t seem to be cutting it.

      Do you think you’ll give it more time, or maybe switch to another CGRP medication? There are a few others out there that work a bit differently.

      Keep us posted!
      Nancy

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  • By Neely McCormick

    @NancyHarrisBonk
    Yes! The melatonin is helping. The first night it took a little time but I was able turn out the lights after some light reading and get to sleep before I began to get anxious. The second night I upped the dose a bit and went to bed, read for about 20 mins, turned out the lights and fell asleep. It was such a relief! I was skeptical but it surely works.

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