Skip to Accessibility Tools Skip to Content Skip to Footer

Forums


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!

    reply
    • 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

      reply
    • 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!

      reply
    • 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

      reply
    • By Neely McCormick

      @thaddisbrow2 I had a pretty disastrous experience with Amovig, which I am still struggling to recover from. I wanted to address your sleep issues. I too had serious sleep disruption which I think I have finally gotten under control. My neuro thinks the medicine disrupted my circadian rhythms. Using highish doses of melatonin we were able to get me back to fairly normal sleep patterns.

      reply
    • By artymay

      Hi
      Thank you so much for your post. I’ve had good results with little headache, but have had a significant increase in joint inflammation in my hands. I am going to discontinue the injection for this reason. I have a history of Ehler Danlos but since starting Aimovig my finger joints have almost doubled in size and Reynaud’s has worsened. This is not acceptable for me. I cannot find anything in the literature regarding autoimmune response except for antibody formation to Aimovig specifically, and an interaction with a biologic for Lupus. As a former provider, I am concerned that the studies are incomplete and people are at risk for worsening conditions previously managed in other ways. It’s been a great 3 months of less headache but this is not a good trade off.
      Good luck to you on all fronts.

      reply
    • By Nancy Harris Bonk Moderator

      Thank you for sharing your journey with us, artymay.

      The clinical trials seemed to be very narrow in scope – participants didn’t seem to have any other conditions than migraine disease. As we are seeing some people with additional disease are seeing more adverse events.

      Please keep us posted on how you are feeling,
      Nancy

      reply
    • By SUNshine830

      I agree I think the studies are incomplete.
      Three months after I began Aimovig I was diagnosed with rosacea and two months after that I was diagnosed with Raynaud’s.
      Now I have trouble with my left hand, I am having difficulty grasping things and am favoring my right hand when doing things . I’ve had CT and it normal. However saw Dr few days and couldn’t separate ring finger and my pinky. He’s ordered a MRI with contact. I get the MRI next week and I see my headache specialist tomorrow and will discuss all this with.her.
      Please respond if you’ve had of these symptoms. I’d appreciate Aimovig has been a miracle drug and I’ve tried so things for 40+ year so hate to get off of Aimovig. But I know body and al, started since I began AIMOVIG.
      THANK YOU

      reply
    • By elfthe

      Wikipedia on CGRP – the thing that is being blocked by aimovig and all this class of medications. “CGRP receptors are found throughout the body, suggesting that the protein may modulate a variety of physiological functions in all major systems (e.g., respiratory, endocrine, gastrointestinal, immune, and cardiovascular)” https://en.wikipedia.org/wiki/Calcitonin_gene-related_peptide
      The reality is that the drug companies have no real information about the side effects of these drugs. They could be causing major long term damage, no one knows. Anything that is this vital to the body functioning in all major bodily symptoms should be studied carefully for a long time…and it is. We are the test subjects. PLEASE report side effects to the FDA, otherwise we are just blowing off steam. https://www.accessdata.fda.gov/scripts/medwatch/index.cfm

      reply
    • By Megson310

      I’m so sorry this happened to you. Aimovig has many side effects that we weren’t told about. I now have horrible vertigo and dizziness and migraines that don’t respond to the triptans I use. I’m so fatigued that each day is a struggle. My neurologist told me it wasn’t the Aimovig either, but trust your instincts. It is literally the only things I have changed in my treatment of migraines and medication use for that matter. I won’t be taking it again and I’m scared to death because it has such a long half-life in the body!

      reply
    • By annieba

      I could have written this verbatim! I took my first and last injection Feb 1,2019.

      This has probably been the worst month of my life and unfortunately I’m blaming Aimovig.

      I’m still struggling with ears ringing, vertigo, my eye sockets just hurt -all the time. I feel like I’m living with a dull migraine daily. I’ve had a full blown migraine once a week or so. It’s the most miserable and depressing feeling I’ve ever had.

      My Imitrix is barely working and that used to be my saving grace. I regret the day I took that injection. 😟

      reply
    • By Neely McCormick

      @anniebe i had disastrous side affects that 7 months after discontinuing Amovig I am still dealing with/recovering from. I experienced some of what you describe in addition to exhaustion, hip and leg pain, intestinal distress, neuropathy and weakness in my left thigh (that lingers still), balance issues and I developed aseptic meningitis about 2 weeks after discontinuing. I was in bed all winter and am still struggling to get back what Amovig took from me. My migraines are more constant and I am just not myself. Good luck to you and just be patient. This medicine has a very long half life.

      reply
    • By annieba

      I could have written this verbatim! I took my first and last injection Feb 1,2019.

      This has probably been the worst month of my life and unfortunately I’m blaming Aimovig.

      I’m still struggling with ears ringing, vertigo, my eye sockets just hurt -all the time. I feel like I’m living with a dull migraine daily. I’ve had a full blown migraine once a week or so. It’s the most miserable and depressing feeling I’ve ever had.

      My Imitrix is barely working and that used to be my saving grace. I regret the day I took that injection. 😟

      reply
    • By Nancy Harris Bonk Moderator

      Hi annieba,

      That’s frustrating! I’m sorry you have experienced this with Aimovig, but you’re not alone as you can see. There seem to be a large number of people who are having a tough time with this medication. Have you been able to report this to the FDA Medwatch Safety Information and Adverse Event Reporting Program? If not, I would encourage you to do so here; https://www.fda.gov/safety/medwatch/.

      Try not to lose hope. The other CGRP medications, Ajovy and Emgaility, are out and seem to have fewer side effects for some folks. They each work a bit differently and may be worth discussing with your doctor.

      Good luck and please keep me posted,
      Nancy

      reply
    • By ares

      Hi,
      do you still have these disorders since March?

      reply
    • By KathrineBH

      Hi there

      thanks for sharing. Did your dizziness go away after you stopped the treatment?

      I am on the big dosage of Aimovig; month 6 and suddenly I can”t get out bed from dizziness and I feel really bad. I really need hope…..

      Best regards from Denmark

      reply
    • By jazzi

      Hello, I had a very similar experience after first injection of Aimovig a numb and tingling lower lip after approximately one minute after first injection. I also had some itchiness over the course of the month. I’m not sure if I should try a second dose.

      reply
    • By Snowbunny

      I now realize after reading more on this blog, that my extreme sickness the last 4 months must be from CCRPS. I experience numbness, tingling, and extreme muscle paralysis of my legs to where I can’t walk . For 1st time in my life I had bronchitis for 34 days but never missed day of work during it, until I had to be rushed to ER from work to make sure I wasn’t having a heart attack. My BP was at 165/ and my pulse rate contstantly between 110 to 145 while being sedentary. Just sitting at my desk at work ( I am Human Resources Coordinator) and speaking to my staff in office, I would become out of breath and extremely dizzy. The last dizzy spell at work, I could no longer walk, so brought me to ER. From Sept.7th 2019 thru October 24th I truly thought I was going to die. I lost my voice for 2 weeks, and still sometimes lose my voice daily. ER said my potassium was very low which is strange because I take potassium daily, and my sodium levels low and I was severely dehydrated. ER Doctor believed all the symptom caused by CGRP. During the 34 days, I went to urgent care 3 times, saw my FP, and ER., was put on 3 rounds antibiotics, 2 rounds of prednisone, inhalers which i have never used in my entire 47 years of living until this incident. Urgent care kept saying bronchitis and severe sinusitis . To this day i still have sinusitis, still lose my voice weekly, comes and goes… and muscle spasms/paralysis of one leg is intermittent, comes and goes . Last week my legs were almost normal, this week I am back to waking up screaming in pain and can’t use leg when it starts. Legs upon wakening are jelly like, numb, heavy feeling, aching …. I am now drinking 3 to 4 V-8 juices a day, along with Gatorade and water to try to normalize my body with loss of sodium and potassium. It has helped but not totally cured leg and feet symptoms. Also, note per my neurologist, I have been taking 1200mg magnesium a day to try to stop the muscle paralysis in my legs. I have lost 37 pounds in last 4 months which I am happy about because I am back to my original normal body weight that i have been all my life. My entire family of 7 siblings are small petite -110 pounds is our normal weight.

      reply
    • By SUNshine830

      Your Reynards has gotten worse and I’ve developed Reynards and my left hand and in my feet. Also the rosacea is something that started a few months after I did a move big. After nine months Aimovig stopped working for me so she she switched me on another RX I cannot remember the name but the mediator mentioned it before. Does anyone experience no muscle coordination in their hand

      reply
    • By 1jamms

      No, I do not. The pharmacist also asked me this. But I definitely do not.

      reply
  • 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.

    reply
    • 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

      reply
    • 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

      reply
    • 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!!

      reply
    • 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

      reply
  • 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

    reply
    • 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

      reply
    • By jenniedoc

      I had my first injection of Aimovig 4 days ago (dosage at 70). I have periodic vestibular migraine episodes and steady intense sinus pressure flare ups that are migraine related. My neurologist urged me to try Aimovig as she has two other patients presenting with vestibular migraines and they have found some relief. Long story short – I regret getting the shot. I have had a similar reaction to other people posting on here – intense upper trap and neck pain/soreness, joint pain, increased vertigo, worsening and shooting head pain, heart palpitations and cognitive impairment. None of which I was experiencing prior to the injection with the exception of vertigo during vestibular episodes and steady sinus/head pain that the injection has made worse. Also, I take no other migraine medications of any kind (with the exception of Advil) so I’m not a candidate for the “Are you sure you’re not just experiencing side effects from other migraine meds?” questions directed at some people reporting side effects on this message board. I’m a middle-aged female and have struggled with vestibular migraines for the past 5 years. What I find alarming is that the literature packaged with Aimovig only states constipation as a side effect. I do market research for a living and a simple search of various Aimovig message boards like this one offer up more than enough causal commonalities of what are obviously multiple side effects that people are experiencing by taking this drug. Neurologists need to educate themselves more effectively about Aimovig’s side effects so that they can better prepare their patients and give them a comprehensive view of the drug’s efficacy and range of side effects. It’s great that it works for some people, however it’s evident that it aggravates the conditions of many others.

      reply
    • By elfthe

      Having realized that Aimovig (and every CGRP inhibitor) blocks the uptake of a protein that is active in EVERY single major organ in the body and that the makers of it have no idea what it does to any of them, either short term or long term, I am horrified that it is on the market. Please, please report your side effects to the FDA, otherwise others will have their lives trashed by this drug. https://www.accessdata.fda.gov/scripts/medwatch/index.cfm

      reply
  • By Hemicrancont

    I have had no side effects after 2 weeks. Sorry to hear many of you are suffering. It is important to be sure this is from the drug.

    reply
  • By Nancy Harris Bonk Moderator

    Hi Dana,

    I wanted to check in and see how the fatigue is, are you feeling any better?

    Nancy

    reply
    • By Neely McCormick

      In another thread I responded to Dana and I too am experiencing muscle aches and profound fatigue. I get so tired going up stairs.

      reply
    • 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

      reply
    • By Neely McCormick

      @dana. I have taken one shot at 70. I’m not at that crossroads of considering upping the dose. I imagine I would because what else new do we have? Maybe Nancy can weigh in on this?

      reply
  • 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

    reply
    • 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.

      reply
    • By laurco50

      Hi. I had a case of alopecia arieta after four months on Aimovig. My docs aren’t sure if it was the cause. I read about auto immune things caused by the drug and alopecia is an auto immune response. I am having to get steroid injections into my scalp. I got lucky it’s under my hair. My doctor is very convinced it is not the Aimovig but we tested for EVERYTHING else, Lupus, inflammatory disease, hormones, thyroid, etc.

      Anyway, if you take a good amount of vitamin C each day, like 1000 mg, it will flush it faster. It’s half life is like two months so it will take about 4 months totally. But the vitamin C flushes your blood and kidneys faster. And it’s water soluble so you can’t OD.

      reply
  • By Nancy Harris Bonk Moderator

    Hi eastcoasta,

    I’m so sorry to hear you are experiencing this. Thank you for sharing that with us.

    Is there any way you have a cold/virus that may be contributing to how you are feeling? Just a thought.

    You may want to report this to the FDA adverse interactions page here; https://www.fda.gov/safety/medwatch/howtoreport/ucm053074.htm.

    I hope you are feeling better asap.
    Nancy

    reply
  • 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.

    reply
    • 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

      reply
  • 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?

    reply
    • 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.

      reply
    • By Nancy Harris Bonk Moderator

      Hi Melissa,

      I’m so sorry to hear you’ve had such a difficult time. I hear you about trading in pain free days for feeling better.

      Try not to lose hope, the other CGRP medications work a bit differently and may not have the same impact Aimovig did. Dr. Dodick explains that here; https://migraine.com/living-migraine/cgrp-work-key-lock/.

      Let me know what you think,
      Nancy

      reply
    • 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

      reply
    • By Hotblond

      I have been on Aimovig for going on 2 years, I have a reaccurring yeast infections that never go away, I take things to try to prevent or not get one, but my migraines are better, but I’m not sure I can keep going with the Aimovig, I’ll have to contact my doctor and figure out what to do.

      reply
    • By Bbonner1980

      Yes me too with the yeast infection and I’ve never had one before I started taking this. I’m going to my check up appointment next week and going to say something bc the 1st infection was horrible! Extreme itching. Second one not as bad but when I got the second one abt a month later I realized it has to have something to do with the med. Now I’m wondering what I will try now? I’m unsure. Aimovig does keep the headaches away but like you, I just don’t think I can keep dealing with yeast infections.

      reply
    • By Melanie Merritt Moderator

      @bbonner1980 I am so sorry you are experiencing recurring yeast infections. In terms of trying other options, I have noticed that sometimes those who don’t tolerate one of the CGRP meds well will have an entirely different experience with one of the other CGRP meds (Ajovy or Emgality, for example). Perhaps it is worth discussing with your doctor. I hope you find something that works for you with less side effects. ~Melanie Merritt (Migraine.com team member)

      reply
    • By Melanie Merritt Moderator

      @bbonner1980 I am so sorry you are experiencing recurring yeast infections. In terms of trying other options, I have noticed that sometimes those who don’t tolerate one of the CGRP meds well will have an entirely different experience with one of the other CGRP meds (Ajovy or Emgality, for example). Perhaps it is worth discussing with your doctor. I hope you find something that works for you with less side effects. ~Melanie Merritt (Migraine.com team member)

      reply
  • 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)

    reply
  • 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.

    reply
    • 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.

      reply
    • By deadeyes

      Thank you for confirming that. My primary and gastrologist weren’t helpful.

      reply
    • By elfthe

      I have had migraine my entire life, and never had IBS or any stomach or Gut issues unless it was a side effect of a medication. These effects when they start after the injection are NOT caused by migraine, they are caused by the Aimovig. Report them to the FDA because they are serious.
      https://www.accessdata.fda.gov/scripts/medwatch/index.cfm

      reply
  • 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

    reply
    • 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.

      reply
    • 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.

      reply
    • 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

      reply
    • 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.

      reply
    • 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

      reply
    • 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.

      reply
    • 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!

      reply
    • 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

      reply
    • By Megson310

      I know exactly how you feel. I should have never trusted the FDA or the pharma industry! I started taking Aimovig in July. For the first 5 months, my migraines were greatly reduced with very little side effects – just constipation and aching in my legs. But in the 6th month, the migraines roared back with a vengeance accompanied with extreme vertigo and dizziness. I am extremely fatigued and my legs continue to ache. My back is also aching. I upped my dosage from the 70 mg to the 140 mg in December because I thought I needed more. Now reading all of these comments I’m terrified of what I have done to myself. It will take 140 days to clear my system! I haven’t been able to work or do much of anything. And, the triptans I usually take do not help at all. I started a special diet called the Stanton Migraine Protocol because I’m so worried. I think there is going to be a lot of damage to people due to this drug and I’m not taking another drug in this category!

      reply
    • By Nancy Harris Bonk Moderator

      HI Megson310,

      Thank you for sharing your difficult journey with us. These medications don’t seem to be for everyone. Some people have been greatly helped by them and others not so much.

      It’s a rough go when new medications come out with all their hype. Weighing the risk vs. benefit taking these new drugs is not an easy task for some of us.

      Please keep me posted on how you are feeling,
      Nancy

      reply
  • By Neely McCormick

    @eastcosta I think the fatigue and muscle pain is definitely a developing common thread. I think all if us that are experiencing this should notify the FDA.

    reply
    • 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.

      reply
    • 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

      reply
    • By kiahuna

      Just a note about half life of drugs. Aimovigs half life is 28 days. This does not mean that the drug will be out of your system in 56 days. It is actually 140 days – over five months.
      See: https://www.drugs.com/article/drug-half-life.html . We will have a long journey ahead to eliminate this “toxin”! Good luck to all.

      reply
    • 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.

      reply
  • 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…

    reply
  • By Anonymous

    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.)

    reply
    • 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.

      reply
    • 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.

      reply
  • 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.

    reply
  • By Nancy Harris Bonk Moderator

    Hi eastcoasta,

    I hope those who have stopped Aimovig will be along shortly to share their experiences with you.

    Nancy

    reply
    • By eastcoasta

      Thanks Nancy. I am 28 days since the injection and am starting to feel better. Those 4 weeks were rough with all those side effects. I just hope as it starts wearing off more I don’t end up with killer migraines. I appreciate your response.

      reply
    • By Nancy Harris Bonk Moderator

      Good to hear. I look forward to more updates.

      Nancy

      reply
  • 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?

    reply
    • By Nancy Harris Bonk Moderator

      Hi everyone,

      Thank you all for sharing your CGRP experiences with us. I hope you are all feeling better.

      Nancy

      reply
  • 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.

    reply
  • 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

    reply
    • 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.

      reply
    • 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?

      reply
    • 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

      reply
    • 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

      reply
    • 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.

      reply
  • 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?

    reply
    • 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.

      reply
  • 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…

    reply
  • 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.

    reply
  • 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.

    reply
  • 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.

    reply
    • By Nancy Harris Bonk Moderator

      Hi brookiepooh81,

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

      Will you keep us posted?

      Nancy

      reply
  • 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.

    reply
    • 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

      reply
    • 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.

      reply
    • By KLJ75

      This is really interesting…I came on this site by accident while searching for injection site infection related to Aimovig and now I’m seeing things that might not just be “old age” and “winter blues”. My vision has rapidly declined in the last two months. Coincidentally I started Aimovig in December 2018. Also, for the last two months I have experienced fatigue. I can’t get out of bed and I’m chronically late for work. Every. Single. Day. I was on topamax and my brain just turned to mush along with other side effects so I switched to Trokendi XR which was a complete nightmare that I HAD to get off!! So hence Aimovig and I weaned off Trokendi XR. After first shot I had two migraines. Manageable and I took Relpax which helped. I’ve had a few more migraines but Relpax works. I took my 2nd shot 2/26 and for the past week or so I have developed a red mark. At first I thought I had bumped into something. It has since gotten a bit more raised and almost looks like ringworm. A bit white in the middle and red around. It just dawned on me that’s where I injected. This is definitely an interesting thread that I’ll be following.

      reply
    • By MrsMiMoo

      I get fewer painful migraines on Topamax but I still get the whirling pink aura migraines. I am now on Topamax, Candesartan and now a beta blocker, timolol. I feel like a balding pill factory. Topa has made me forget my words and lose my hair but it has helped the migraines. The side effects have been very bad.

      reply
    • 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.

      reply
  • 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.

    reply
  • 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

    reply
  • 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.

    reply
    • 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

      reply
    • 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

      reply
    • 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.

      reply
    • 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.

      reply
    • 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.

      reply
    • 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!!

      reply
    • 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.

      reply
    • 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!

      reply
    • 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

      reply
    • 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?

      reply
    • 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?

      reply
    • 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.

      reply
    • 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

      reply
    • 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.

      reply
    • 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

      reply
    • By Megson310

      Check out the Stanton Migraine Protocol. YOu can find her blog online and her book on Amazon. It will work! Nothing else does!

      reply
    • 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

      reply
    • By adkrauss

      Dana – Why did you hate Jefferson Headache Center?

      reply
  • 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.

    reply
    • 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.

      reply
    • By Nancy Harris Bonk Moderator

      Hi eastcoasta,

      That’s awful. I hope you are feeling better now~!
      Nancy

      reply
  • 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)??

    reply
    • 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.

      reply
  • 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?

    reply
    • 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

      reply
    • 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.

      reply
    • 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.

      reply
    • By INKEDKATLADY

      I have had epidural steroid injections in my lower back, the last one in August. The hip and knee pain are all new. Totally the Aimovig.

      reply
    • 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.

      reply
  • 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.

    reply
  • 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.”

    reply
    • By Nancy Harris Bonk Moderator

      Hi auntie6,

      Interesting! Thank you for sharing your conversation with the doctor!

      Nancy

      reply
    • 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.

      reply
    • By Megson310

      I have fibromyalgia too and after 5 months on Aimovig everything got worse, the fibro pain, the migraines, TMJ pain, left arm numb, vertigo and dizziness accompanied by a dull pain right in the back of my neck – like a migraine trigger that never goes away. I have back pain now, and I’ve been in PT since the first of the year. The nightmares are off the charts so I’m not sleeping well and that makes everything so much worse. I work from home and can hardly concentrate to get anything done. The fatigue has been crippling. My neuro doc said it wasn’t Aimovig but switched me over to Emgality. No thanks! I’m not taking this poison ever again. I’m also reporting all of this to the FDA. I didn’t know about the anti-bodies that everyone is talking about.Why wasn’t that mentioned in any of the literature??? I’m furious at these pharma companies and doctors.

      reply
  • 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!

    reply
  • 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

    reply
  • 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?

    reply
  • 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.

    reply
  • 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.

    reply
    • 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

      reply
    • 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.

      reply
  • 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.

    reply
    • By Neely McCormick

      @inkedcatlady you hang in there too. Thanks for the good support.

      reply
  • 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.

    reply
    • 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.

      reply
  • 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.

    reply
  • 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.

    reply
  • By INKEDKATLADY

    @spriest for sure. So sorry you too are dealing with this poison. All of the pain I am having, I never had before the Aimovig.

    reply
  • 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 🙏🏼

    reply
  • 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?

    reply
    • 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.

      reply
    • 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.

      reply
    • 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).

      reply
    • 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).

      reply
    • 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.

      reply
    • By Neely McCormick

      @eastcosta
      I was due for a shot the day after Thanksgiving so I would say my last shot was around Halloween. This is not fun. Rest and feel better.
      Neely

      reply
    • By Caviaxxx

      @neely I wish you all the best. This is just terrible and so scary.

      reply
  • 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?

    reply
    • 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.

      reply
    • By pwrnapper

      Thanks Diana and I will give your suggestions a try. As you know this can be a difficult problems.

      reply
  • 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

    reply
  • 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

    reply
  • 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

    reply
  • 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?

    reply
    • 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!

      reply
  • 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

    reply
    • By pwrnapper

      I was on Topomax years ago and stopped taking it due to paresthesia and tinnitus. Now that people mention it on this site the Aimovig I have been taking for a few months now does have these same side effects, which are not easy to deal with. Catch 22, either have the migraines or side effects.

      reply
    • By cuzi

      Where did/do you experience the paresthesia?

      reply
    • By Neely McCormick

      @pwrnapper
      It is so frustrating. I think this is the problem with finding solutions to anything neurological. For me, at least I know how to manage my migraine and have my life. The side effects are an unknown and for me, kind of more trouble than they are worth. If I’m going to struggle I’d rather struggle with what I know best.

      reply
    • By Nancy Harris Bonk Moderator

      Hi Diana5,

      That’s very interesting. Would you please share where you found that information?

      Nancy

      reply
  • By Neely McCormick

    @diana5
    Wow. Did not know that. Good to know. Yeah, it would make sense that there might be similar side effects. Thanks for that.

    reply
  • 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.

    reply
  • By Nancy Harris Bonk Moderator

    Hi tallguywithmigraine,

    Fingers crossed the higher dose makes a difference!!

    Nancy

    reply
  • 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?

    reply
  • By Anonymous

    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.

    reply
    • 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.

      reply
  • 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.

    reply
    • 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

      reply
    • 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.

      reply
  • 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

    reply
    • 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

      reply
  • 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?

    reply
    • By INKEDKATLADY

      @emi346 I have had the severe pain from a cyst that hasn’t been a problem until now.

      reply
    • 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?

      reply
    • 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.

      reply
  • 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.

    reply
    • 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

      reply
  • 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.

    reply
  • 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.

    reply
    • 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

      reply
  • By Nancy Harris Bonk Moderator

    Hi oms555,

    Thank you for sharing that information with us – it’s fascinating!

    Nancy

    reply
  • 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.

    reply
    • 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.

      reply
  • 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

    reply
  • 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

    reply
  • 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.

    reply
  • 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

    reply
    • 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.

      reply
  • 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.

    reply
  • 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

    reply
  • 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!

    reply
    • 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

      reply
  • 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.”

    reply
    • By cash80221

      I wanted to update my Aimovig journey since my post almost a month ago. After much debate and discussion with my PCP, I decided to take my 4th injection on January 8th. I can truthfully say this month, my strange side effects of heartburn, heart palpitations, shortness of breath, anxiety, etc., have almost disappeared. While my chronic migraines haven’t totally disappeared, I am averaging 4-5 a month instead of 4-5 every week that needed a triptan rescue medication. The 3rd month, the migraines were greatly increased in intensity and triptans made very little difference. But this month (4th month), the intensity is more my “normal” migraine and triptans are working again.

      There are evidently a lot of side effects and/or reactions that are possible. I weighed between – do I stop Aimovig and go back to what I know WILL happen (chronic daily migraines with 4-5 a week needing triptan rescue), or keep taking Aimovig, enjoy a life with only 4-5 migraines a month, and risk what COULD happen (the ever-present possibility of side effects). I decided that for now, I will stick with Aimovig and enjoy a life of greatly reduced migraines.

      reply
  • 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!

    reply
    • By beachbumgirl

      @jamiezac
      You can also notify the FDA about your side effects.
      They keep track.
      Hope it gets better.

      reply
    • By terrib1000

      I didn’t even tie the fatigue to the Amivog. I had so many new headaches I thought it was because my headaches were out of control. I stopped going out.

      reply
  • 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!

    reply
  • 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.

    reply
    • By mrabb

      Thank you for letting me know. Does that medicine work differently than Aimovig. Wishing you the best that it helps.

      reply
  • 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.

    reply
    • 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!

      reply
  • 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.

    reply
  • 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

    reply
  • 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.

    reply
  • 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.

    reply
    • 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.

      reply
    • By Nancy Harris Bonk Moderator

      Hi Neely McCormick,

      Thank you for the update. Please let me know if the melatonin has an impact on your sleep cycle.

      Insomnia is the worst!

      Nancy

      reply
    • 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

      reply
  • 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.

    reply
  • By Nancy Harris Bonk Moderator

    Good to hear Neely McCormick!!

    Hoping you have a low pain day!
    Nancy

    reply
  • By carolelynn

    I am so disappointed but I am going to have to stop the Aimovig. I am one of the ones that really had a great result after the very first injection(s) at 140mg. I’ve been doing the injections for 4 months.

    Very long story short, I have to stop the Aimovig because it is causing ischemia in my small bowel. I knew I couldn’t take Imitrex because of that concern, and I am so sorry to report that this is happening with the Aimovig. (I have Scleroderma so I have to be careful.)

    I’ve already had major surgery years ago due to intestinal ischemia and bowel obstruction so I am stopping the Aimovig now.

    My UCLA rheumatologist and my neurologist are both reporting this unexpected and really problematic bad side-effect.

    Ugh. So disappointing.

    reply
  • By Neely McCormick

    I’m so sorry for you. What a disappointment. I am glad to hear that your doctors who are affliated with an institution of known reputation are reporting these risks.

    reply
  • By carolelynn

    Thanks, it is disappointing. I feel like I should’ve been more cautious but this one even caught these experts off guard (I checked with both of them before starting it) and I do believe it was worth trying.

    Both doctors wanted to report my problems with it; I’m interested to hear what all the doctor and expert findings are after this first year or two.

    reply
  • By SleepySwann

    I just took my first 70mg shot last night. I’ve been so excited!! BUT I’ve spent all day with probably the worst migraine ever. I’ve taken 2 Imitrex and NO relief. I don’t know what to do???

    reply
    • By Nancy Harris Bonk Moderator

      Hi SleepySwann,

      I’m so sorry you weren’t feeling well and hope the migraine attack is over. If not, when migraine pain lasts longer than 72 hours, it’s a good idea to talk to the doctor and see what he can do to break it. Migraine pain lasting this long increases our risk of status migrainous and stroke. You may want to take a look at this information if you haven’t seen it already; https://migraine.com/blog/what-is-emergency/.

      I hope this helps and you are feeling better,
      Nancy

      reply
  • By tallguywithmigraine

    Curious whether anyone else has seen the therapeutic effects of Aimovig go away over time? I started taking Aimovig in June 2018 and saw a 75% reduction in migraine frequency. This lasted 6 months, then the migraines returned. My neurologist switched me over to Emgality 3 weeks ago, and my migraine frequency went down again. I’m wondering if I may have developed neutralizing antibodies to Aimovig??

    reply
    • By RebekkaT84

      Immunogenicity is touched on in the full prescribing information: “In controlled studies with AIMOVIG, the incidence of anti-erenumab-aooe antibody development was 6.2% (48/778) in patients receiving AIMOVIG 70 mg once monthly (2 of whom had in vitro neutralizing activity) and 2.6% (13/504) in patients receiving AIMOVIG 140 mg once monthly (none of whom had in vitro neutralizing activity). The neutralizing anti-erenumab-aooe antibody positive rate may be underestimated because of limitations of the assay. Although these data do not demonstrate an impact of anti-erenumab-aooe antibody development on the efficacy or safety of AIMOVIG in these patients, the available data are too limited to make definitive conclusions.” I’m assuming this is what can make the drug less effective.

      reply
  • By RebekkaT84

    Thank you to everyone who has taken the time to report possible side effects of AIMOVIG. This helped me tremendously and I see a lot more clearly now.

    I had my first 70mg shot in the third week of December at UCLA’s migraine clinic. I have been diagnosed with chronic migraine, since I also have a lot of intense regular headache days. Abortive meds have luckily been a blessing for me but the overall quality of life is obviously still majorly impacted.

    The first two weeks of AIMOVIG were honestly incredible! For the first time in my life I felt capable and light in my head without limitations. I couldn’t believe the way I felt.

    The effect started to slowly wear off but I only had two migraines towards the end of the month. Still a few headache days.

    This being said, I decided today to not continue with the next injection (that’s already stored in my fridge). I actually can’t believe that I can’t get myself to stick with it.

    My side effects are actually measurable and concern me greatly – I’m in my mid thirties and have always had excellent blood pressure. My diastolic (lower reading) has shot up to the mid 80s from the mid 60s! I check this figure regularly. I also developed shooting chest pains, which are starting to really freak me out.

    Besides the measurable effects, I also have:
    – pain in my lower ribcage (or from the gallbladder and pancreas, probably)
    – hard time staying asleep
    – low energy
    – initially rashes on both shins
    – intense body pains, especially at the beginning
    – episodes of very blurry vision
    – hard time comprehending things every now and then
    – breakthrough bleeding

    I am ashamed to be so afraid to continue AIMOVIG as I’ve always demanded a relief of my migraines but I’m also my own best health advocate.

    I’m really hoping my symptoms subside and that my blood pressure readings return to normal. I’m honestly scared.

    Five weeks post 70 mg injection.

    reply
    • By Neely McCormick

      @rebekkat84
      Listen to yourself and your body. All of the symptoms seem to be recurring and common to what I have experienced and what I have been seeing, here in these forums. If you don’t want to take that second shot – don’t. I have had a disastrous outcome from this drug and I wish I had listened to myself. I too knew after the first shot that I didn’t feel right but…Stay your course.

      reply
    • By Nancy Harris Bonk Moderator

      Hi Neely McCormick,

      Great input! You’re so right when it comes to listening to our body!

      Thanks for sharing!

      Nancy

      reply
  • By tealine

    Anyone experiencing hair loss or hair thinning after taking Aimovig?

    reply
  • By Karen

    I posted before that one of the many side effects I had from 4 months of Aimovig 140 mg injections was a terrifying amount of hair loss. Gobs of hair in shower drain. (Topamax had this same effect & other very bad ones, so I stopped it, tho it did help me.)
    Horrible anxiety, tremors, insomnia, heart palpitations from Aimovig too. And no real relief of migraines. A little less intense. Not worth it.
    I switched to Emgality 2 months ago. Still hair loss-Aimovig may still be in my system. I’ll wait a bit to see if it continues. Minor results on migraines so far. VERY disappointing!

    reply
    • By tealine

      Thanks Karen
      I told my neurologist and he said he had not heard of loss of hair as a side effect and I know it is the Aimovig. Going to stop taking it for sure.

      reply
    • By Batch

      Hey Karen,

      Adverse events (side effects) from taking monoclonal antibodies (mAbs) can get worse over time and in some cases, even after some have stopped taking them. Granted, the incidence of AEs is relatively low, but that’s little comfort when they happen to you. Search the FDAs Adverse Events Reporting System (FAERS) Internet site, MedWatch Drug Adverse Events (AERS) and key in “Aimovig” in the drug name window. There are over 1000 AEs reported since the FDA approved Aimovig.

      I was on daclizumab for over a year during a clinical trial at NIH, Bethesda, MD for an autoimmune eye condition 2001-2003. It nearly destroyed my immune system with a long list of AEs…

      The good news is vitamin D3 is just as effective in reducing migraine days and it doesn’t have any AEs. A 5 September 2018, RCT found that 4000 IU/day vitamin D3 costing less than 6 cents a day, $1.80 per month, was just as effective as the leading monoclonal antibodies (mAb) in reducing migraine days. No side effects were reported or noted.

      Plug “A randomized, double-blinded, placebo-controlled, parallel trial of vitamin D3 supplementation in adult patients with migraine” into your browser search window for details.

      See your PCP for a lab test of your serum 25(OH)D. This is the serum level metabolite of vitamin D3 that’s used to measure its status. Unless you’ve been taking vitamin D3, it’s a safe bet you’re vitamin D3 insufficient/deficient.

      When you get the lab results back, hundreds of cluster headache sufferers have found taking 10,000 IU/day vitamin D3, 1000 mg/day Omega-3 fish oil and the vitamin D3 co-nutrients: 400 mg/day magnesium, 25 mg/day zinc, 3 mg/day boron and vitamin A at RDA, very safe and it’s helped prevent their CH. Quite a few migraineurs have tried this regimen with similar results.

      reply
    • By Karen

      Thanks batch for all that great info. I knew there had to be a way to find out about Adverse Effects not listed on the drug inserts. It’s getting scary to me now!
      After the Topamax massive hair loss, I had to STAY on it for many weeks after as I tapered off it. Not safe to go off all at once. So I had to keep losing hair! Took years to grow back.
      Now it’s happening again. At least I can go off the CGRP meds at once. Yes, they’ll stay in my body but hopefully not enough to cause tremendous additional hair loss.
      Thanks too for the vitamin info. I’ve tried most of the ones you mentioned. My migraines are very resistant to meds-acute and preventative and they are called atypical/hybrid type. Lucky me.

      reply
  • By Karen

    Yes tealine. No doubt in my mind. I’m just worried that the Emgality will have the same side effect. It does not give me anxiety or insomnia or the other side effects so far.
    But even if it just is the side effect of similar hair loss? Going off it whether it helps my migraines or not! Baldness isn’t what I’m looking for in my medications, in addition to having to deal with daily chronic migraines!
    I have read MANY user reviews of both Aimovig & Emgality (less of these) saying there was significant hair loss after using them. Whether our neurologists have heard about this or whether users have even related their hair loss to these drugs-it is real.

    reply
    • By tealine

      It helps knowing it is happening to others.

      reply
  • By Diana5

    RebekkaT,
    I want to encourage you to have the blurry vision checked out. I developed sudden blurred vision shortly after my third injection of Aimovig. I was diagnosed with epiretinal membrane, and they are checking for macular degeneration. There is no evidence that it is related to the medication, but it has been reported. Hope you are improving rapidly.
    Diana

    reply
    • By RebekkaT84

      Diana, I really appreciate your advice! So sorry and also shocked to hear that your ophthalmologist is checking for macular degeneration. Hoping you’ll get good news soon. I certainly noticed a sudden onset of blurry vision. Additionally, the blue lights which I used to see in the past, have returned at a high frequency. I’ll be sure to get my eyes checked out very soon. Incredible to hear about all these potential side effects. Thank you again and best wishes. Rebekka

      reply
  • By sysad

    Hello all. Question for anyone that can help out. I took my first injection tonite, 70mg. I was prescribed the 140mg by my neurologist, but my insurance company knows way more than he does and said I would get the 70mg. I should just skip the neurologist, copay, taking time off from work, waiting in the waiting room, and just call my insurance company and ask them to prescribe medications. But my question is, my insurance is sending out 70mg every two weeks for three months. My neurologist said to go ahead and take the 70mg every two weeks. Does this seem right? Is anyone else doing this? The medication is good for thirty days, what will the effect be of every two weeks? Thank you for all the posts above and how it is working for everyone. Hoping this will be the answer.

    reply
  • By adkrauss

    Sysad – I have not heard of anyone taking the injection on a two week cycle, regardless of dosage. I took 70mg first month and 140mg for months two and three and then quit due to side effects and no benefits. I am due to try the Emgality next week after approx. 3 1/2 months off the Aimovig.

    reply
  • By Tre S

    I started using Aimovig in August and was on the 70mg dose but increased my dose to 140 this month to 140mg so have take 5 70mg doses and 1 140mg dose. Like many of the other people who have posted, I also have some chronic pain issues–fibromyalgia and EDS.

    However, unlike the other folks whose posts I’ve read, the first response I had to Aimovig was an over decrease in my all body pain. It does not help in places I have acute injuries (I’m healing from a frozen shoulder, e.g.), but in the rest of my body, I have less pain.

    I still have headaches everyday but the intensity of my headaches decreased dramatically.

    I do have numbness on the left side of my face right now but that pretty normal for me (due to intense muscle tightness and pinched nerves).

    I am also experiencing blurred vision right now–which could be due to the muscle tightness, pinched nerves that predate Aimovig–but since this is my first time on this dose, I figured I would ask if anyone else has had blurred vision that seems associated with the medication?

    reply
    • By Diana5

      Tre S,

      I have had blurred vision, as well. I took three 70mg doses, and after the 3rd in November, woke one morning with very distorted vision in one eye. I have been diagnosed with epiretinal membrane. Surgery is the only treatment. I have reported this to Amgen, and my eye doctor does not think there is any reason to believe it is associated with Aimovig.

      I had great relief from Aimovig, and that last shot prevented migraines for 2 1/2 months — until today, unfortunately! (When I participated in the trial, I had a month without migraines after taking one pill.) I am wondering if my Aimovig side effects (constipation, heartburn, tinnitus, neck pain) were from taking too high a dose.

      reply
  • By Sharon f

    Hi all,
    I’m due to start Aimovig tomorrow, 140 dose straight up as I suffer so severely with migraines. I’m just wondering if others were told to stop taking Topamax if they were already taking it. My neurologist didn’t mention it and he is so hard to contact that I’m hoping you guys might be able to pass on some words of wisdom. Like most of us it will be a blessing to be able to leave Topamax behind.
    Thanks

    reply
    • By carolelynn

      Hi Sharon, I had the same question of my neurologist. You shouldn’t cut Topamax out *yet* for a few reasons.

      1) As Megson said, you need to wean down (I don’t know your dosage of Topamax; it didn’t take me long.)

      2) It’s important – like when you try an elimination diet – to isolate what works and what doesn’t. For some people the right combo of both Topamax and Aimovig is the answer.

      So if the Aimovig seems to help, then they probably will start eliminating the Topamax and/or other migraine meds like Botox. You just don’t want to do it all at once because it makes it harder to know what will be the right combo for you – and hopefully the Aimovig alone does the trick.

      reply
  • By Megson310

    You cannot just stop Topomax, you have to wean off of it is my understanding. I went to a diet protocol and I’m learning more about how food and salt and electrolyte imbalances contribute almost wholly to migraines. It’s working so far.

    reply
  • By Kimbirch

    I started Aimovig in Oct 2018. I am happy to say my monthly headache days have significantly decreased (14-16 mo. now 4-5 mo.). However, I have had side effects. I was not surprised at the constipation as it is a reported side effect. I am also suffering from fatigue and joint pain, neither of which I expected but see from this forum it is related. Has anyone experienced weight gain? I started a diet and exercise program to combat both the fatigue and weight issue but do not seem to be making progress with either. I am not willing to give up. I can control and tolerate my joint pain/stiffness and fatigue, I have no control or tolerance for migraines. For me the trade off is worth it.

    reply
  • By laurawarren

    I have been having joint pain and swelling since starting Aimovig. I noticed multiple people in this blog are reporting this side effect. I reported my side effect to the FDA. I urge everyone to do the same so we will stop being told there aren’t any side effects to this drug.

    reply
    • By Nancy Harris Bonk Moderator

      Hi laurawarren,

      Thank you for sharing that with us, but I am sorry you are experiencing unwanted side effects.

      It’s a good idea to let the FDA know about adverse events, good for you.

      Here’s to a low pain day,
      Nancy

      reply
  • By jlope

    I’ve been trying Aimovig for 3 months now. I don’t have much decrease in migraine frequency from Botox (20-23 days/month). I have an increase in intensity (my migraines are generally not incredibly painful). But I have hugely increased energy. I feel almost like I have the energy levels of my friends & colleagues.

    However, the downside of this feeling is that it seems be feeding into severe anxiety during many of my migraines. This week was the worst. I had 6 migraines and 3 days during which I had anxiety breakdowns.I aborted migraines on Th & Friday using eletriptan, but I can’t do this every day. This is incredibly unusual for me. I am not a particularly anxious person. I’ll go back to the doctor shortly.

    reply
    • By Karen

      Hi jlope.
      I posted earlier that I had extreme anxiety as a side effect of Aimovig for the 4 months I tried it. It was worst after each injection for about 2 weeks. Then 2 weeks of less but still heightened uncomfortable anxiety. Awful! So I had to stop it and switch to Emgality. It does not have the anxiety side effect at all. It has an effect on my migraines similar to Aimovig-mostly decreasing the intensity. Not so much the frequency. Helps me use fewer doses of abortive meds and they work better when I do use them. I’ll take that!

      reply
    • By Nancy Harris Bonk Moderator

      Hi jlope,

      I’m sorry you are experiencing anxiety with this medication, that must be frustrating. I hope the doctor has an answer for you. Maybe switching to one of the other CGRP medications?

      Will you let me know how you make out with the doctor?
      Nancy

      reply
  • By Diana5

    I also switched to Emgality. The headache relief I got from Aimovig fortunately lasted 3 months after the last shot. Emgality was less painful to inject, causes less constipation, but also is less effective at preventing migraines. Better than nothing, but not as good as Aimovig. The triptans still work as a backup.

    reply
  • By djudju0120

    Since starting Aimovig I have experienced a lot of fatigue like not as bad like falling asleep everywhere but bad enough to create an acct and let other ppl know. I am still having the migraines has not really changed yet like the severity of it or anything. I read somewhere else that it can take up to 3 injections to get the full benefits am I just wasting my time on trying the 3rd shot or does it really start to feel better?

    reply
  • By Nancy Harris Bonk Moderator

    Hi djudju0120,

    We’ve heard from a number of people that it can take three or four injections before they start to feel better. I would stick with it were me.

    If this CGRP medication isn’t the one for you, don’t lose hope! There are two others available and more coming down the pipeline that may be beneficial. They each work a bit differently – there’s hope!!

    Wishing you a low pain day,
    Nancy

    reply
  • By Megson310

    In my experience with Aimovig, I started having problems after my 5th injection. I started this post with my symptoms which included 2 week horrific migraines that would not response to my triptans, numbness in my left arm, severe vertigo and dizziness and fatigue. I have fibromyalgia and have always done pretty well with diet and exercise but Aimovig made all my fibro symptoms explode. I will never take it again. I’m 3 months out now and still having dizziness and fatigue. I’m actually pretty scared for the first time in my life that this will not go away. They lied to us, that’s the bottom line.

    reply
    • By Nancy Harris Bonk Moderator

      Hi Megson310,

      That sure sounds frustrating. I don’t believe the clinical trials did not include people with multiple chronic health issues. We have heard from many others who have had similar issues. The half life is fairly long for Aimovig, hopefully these symptoms will pass sooner rather than later.

      Did you by any chance have the opportunity to report this to the FDA Medwatch site? If not, I would encourage you to as it take a just a few minutes. Here is the link; https://www.fda.gov/safety/medwatch/howtoreport/ucm053074.htm.

      Wishing you a low pain day,
      Nancy

      reply
  • By Megson310

    No, do not “stick with it” it only gets worse and it has a very long half life so it will not be out of your system for months!

    reply
  • By Andrea

    I started Amovig in August of 2018. I take 140 mg. It’s been a lifesaver for me, significantly decreasing both the frequency and severity of my migraines. I still get Botox injections every three months and trigger point & never block injections about 1x month because stress is a major trigger for me. I had a stroke in May of 2018 and I’m trying to return to work – the physical deficits are pretty much resolved, but trying to return to work weighed down by cognitive deficits (especially when I am a perfectionist) is extremely stressful.

    Anyway I digress. About 5 weeks ago, my asthma, which had been under decent control, flared really badly. It’s still going. Nothing is helping. Been through 3 course of steroids, my pulmonologist added 2 new inhalers (which trigger mild migraines). I can no longer use triptans or NSAIDS due to the stroke. My headache specialist prescribed a VERY low dose of Thorazine (10 mg 2x a day), which actually helps. My physical therapist said she has another client who had to stop using Amovig due to her asthma becoming so severe.

    Has anyone else experienced this association between using Amovig and a severe increase in asthma symptoms? Thanks.

    reply
    • By azurelle

      Andrea, now that you’ve mentioned asthma issues I’m wondering…. I take advair and respond so well/strongly to it that I use it only in the morning, it hold me almost 24 hours with one puff. I also have a history of being okay if I miss a dose every now and again (brain fart!). For the past month I’ve noticed that I actually notice if I miss a dose of advair or take it later than normal. In fact, I can recall two different times that I’ve used it twice a day instead of once.

      Can I say for certain my asthma has reacted to aimovig? No. But it sure makes me go “mmmmmmm….” now that I’ve read that you had issues, too.

      reply
  • By larajane

    This is my first time trying Amovig. I have been in bed for 5 days with the worst pain in my stomach and being physically sick. I can’t tell if it was from the shot or not? Has anyone had this reaction? The only good thing is no migraines!!! But also very runny nose.
    Thanks

    reply
  • By tallguywithmigraine

    How does one unsubscribe from this forum? The instructions in the emails say:

    “Login and visit the topic to unsubscribe from these emails.”

    I can’t find this option on the forum page, even when I’m logged in.

    reply
  • By hobbitgirl

    I don’t want to sound dismissive of anyone’s complaints–god knows we have all had enough of that!–but ask folks to consider this:

    Could the painkillers you’ve been taking for chronic migraines, or the pain from migraines themselves, have masked other aches and pains?

    That has been my case. I quit all meds cold turkey (before the new cgrp meds), and discovered I had an aging body, with pain from gardening, etc that I never experienced while on painkillers or with a migraine in progress. Never had joint pain, arthritis, but then an xray for an injury showed I did. Then, when pain free on these new cgrp meds, I started doing more things, which led to both pain and injuries. Also, I found that even slight weight gain causes me joint pains–and that association is well-documented in medical literature.

    Therefore, the only way to rule out other causes is to do continue whatever pain meds you took before, not change routine/activity, weigh self every day (and lose weigh if above normal bmi) get xrays on joints…those don’t rule out all variables, but would help figure out if it’s the new meds….which would also greatly help make the case for FDA, or class action if needed…as well as helping your own self figure out what is going on.

    For me, having extended breaks from migraines has helped me understand mine better, which helps me manage, mitigate better, as well as awareness of rest of body.

    I also finally found out what a ‘plain old headache’ felt like, and how quickly relieved with just 1 tiny tylenol. (My friends laughed at my astonishment at how ‘easy’ they are.)

    reply
    • By Sharon f

      Hi everyone
      Love the comment about our pain killers hiding all our other aches and pains! I think it’s probably so true. I think it’s like I have tinnitus which I have mostly learned to live with and forget about but the time when I notice it most is at the worst possible time- during a migraine attack.
      I have also tried to think outside of the box when I can. A visit to the hairdresser used to be one of life’s great pleasures for me until it became a trigger for a major migraine. So now I have a really short hair style, quick to colour and gets me in and out quicker. No migraine the next day and I look gorgeous.
      Also, I’m due for my 3rd Aimovig injection (140) in a couple of days and fortunately for me it has been a godsend. Yes I’m having some side effects but less serious than the ones from Topamax so I’ll take that as a win. Hopefully research will continue to provide us with an even better alternative in the not too distant future.
      And in case you’re not sure, I’m a glass half full kinda gal.

      reply
  • By azurelle

    I also had major side effects from aimovig. About 36 hours after the injection I started having heart palpitations 10-12 times a day followed by chills, cold hands and feet, and I basically stopped sleeping. I would sleep for about 90 mins then be awake 3-4 hours the sleep another 90 mins then be awake for another 3-4 hours. Sometimes my heart would flutter enough to wake me up during those rare 90 minutes of sleep. This went on for three weeks. (I also developed a yeast infection within a week of taking aimovig.) It’s been three and half weeks since my dose and the heart palpitations have basically stopped and I’m now sleeping 3-4 hours at a time before being up for 2-3 hours, so it’s slowly getting better.

    It did seem to make my acute meds work better and migraines definitely didn’t last as long, but then again, I could have been so distracted by the heart problems I didn’t noticed the migraines as much.

    I will NOT be taking this again!

    reply
    • By Neely McCormick

      @azurelle I too had sleep problems. Nearly identical times as you – 90mins asleep and up for hours. It was miserable and I continued to have the same problems for a couple of months after discontinuing the medicine. My neurologist recommended Melatonin (10mg) and it worked.

      reply
  • By debaroooo

    I have bad constipation. I’ve tried stool softeners but they don’t really help. This didn’t really start until I started the 140mg per month in November. I’ve been on it since the release and was possibly the 1st person in GA to have the shot. No side effects really until my doctor increased the dosage. The headaches finally got better but my bowel movements worse. I’ve also been nauseous almost daily. I have had right ear issues (pain) off and on and didn’t really think of it being related but maybe it is. I am also fitigued throughout the day. When driving it’s the worse. Maybe this is the reason for that too.

    reply
  • By kml727

    I’m on month 5 of Aimovig. So far it has controlled my migraines better than any other drug. However, I’m experiencing severe muscle, joint pain. Almost can’t walk when I get out of bed in morning and pain lessens throughout day. I have been completely sore for the past few days.

    reply
  • By Msmmain

    I too have had problems with the Aimovig – I had my first dose on Jan 30th & the second on March 2. I didn’t notice until almost halfway through the second month, but my migraines started getting worse/harder to treat & way more frequent almost right away. My other side effects took my attention though. The day after the second dose, I had an extreme case of gastric distress that actually had me screaming it hurt so bad, and then I developed a blockage in my intestines. I hadn’t eaten anything out of the norm since my guts are SO sensitive thanks to my migraines (plus major food trigger problems) so I’m almost certain that the Aimovig caused it. I also started having a period again despite having an implant that had completely stopped my cycle for the last 3 years, so now I’m having extreme cramping & menstrual migraines that don’t respond to anything. My neurologist took me off the Aimovig after the intestinal blockage since there is mention of “some constipation” or some such BS in the warnings – but what I experienced was NOT mild. I swear I felt something tear inside with the blockage – which still hurts & they’re still trying to get my insurance to approve a CT scan for it. My Dr switched me to Emgality starting last Saturday, and I’ve had a mild migraine ever since (that likes to blossom into “oh god – kill me” level migraines at the drop of a hat) but I dont know if it’s a residual complication of the Aimovig or maybe I can’t tolerate the CGRP drugs at all. I feel like they didn’t study the drop-out patients enough from the studies for this, and went hey! the people who stuck with it are happy, so everyone must be! They look into why people drop out for cancer drug trials, so why wouldn’t they for something like this??

    reply
  • By daltal10

    Hi
    Just got the shot yesterday for my silent migraine and woke up feeling extremely weak and with a splitting headache though with no aura. No constipation but with all my previous symptoms such as pounding dizziness nausea so basically worse. My doctor said it will take a few days for the drug to work. Anybody had the same reaction? Thanks

    reply
    • By cal2

      I had that splitting headache within a minute of my first injection but it went away quickly and my stomach just ached for a week after the first 2 injections. I did notice random shots of pain behind my migraine eye in the beginning but I’m never sure what’s causing the strange stuff. The aura decreased each month and I felt like I was going to faint often when standing up but didn’t think it might be from the shot until reading your post. I just posted about my experiences because I just stopped the injection this month even though the pain decreased significantly the longer I was on it because the nausea increased at the same rate. For me, it took 3 months of injections before I felt the pain days and pain level decrease and 5 months for the nausea side effect I had to become debilitating. Somewhere in the middle, the weird side effects weren’t noticeable. I wish you lessening side effects and more migraine relief. The one thing I’ve learned is the reactions to treatments vary a confusing amount among us and I can have some that no one else has mentioned.

      reply
  • By cal2

    I started Aimovig Oct 2018 and my stomach felt “unwell” but it wasn’t too bothersome. I’ve been in pain daily since April 16, 2007 and I’m willing to try anything and put up with side effects to see if they go away with continued use if I benefit from a treatment on any level to any degree. I didn’t take my shot last week after realizing Aimovig decreased the pain level significantly the longer I was on it but it increased nausea at the same rate. The last 2 months, I lived on Promethazine which is the only nausea med that helps me but is the only med that totally knocks me out. The nausea was that migraine nausea so many of us know too well that’s relentless and as debilitating as the pain. As it kept increasing and I was spending more time in survival mode, I couldn’t think well enough to realize the connection to the injection. I had stopped answering when my daughter called because I can’t listen or talk through the nausea or Promethazine. She came home for Easter 4 days before my next injection, I was able to leave the house for the 1st time since the last injection and that’s the day I looked at my calendar and saw I’d cancelled everything I was supposed to do the last 2 months because of extreme nausea and had stopped being a participant in living. I awoke again today with no nausea but with excruciating migraine pain and I came here to find out what others have been saying. It’s always a quality of life decision for me. For now, I’m deciding to go back to having pain that’s erratic in level and duration that I cannot plan for because I’ll have days that different coping mechanisms or pain meds help knock down the pain just long enough to enjoy moments. I’ll begin a new treatment after a few months of recovering from the last. Thanks to all who are willing to share their experiences. It helps me find answers and support navigating this thing that I can’t explain to others.

    reply
  • By elfthe

    PLEASE report these side effects to the FDA (online) and to your doctor in writing or your experiences with Aimovig will simply go unnoticed by the medical community and will not help others to avoid suffering and make informed decisions. Keep your box and injector, you will need the information for the FDA.

    https://www.accessdata.fda.gov/scripts/medwatch/index.cfm

    reply
  • By Jarsheart

    I have been on Aimovig for 7 months. I noticed that I get a massive migraine the fourth day after injection that Maxalt doesn’t touch. I’ve also been experiencing fatigue and muscle pain. Due to these issues, I’m going to discontinue this medication.

    reply
  • By EK410

    I have been suffering for weeks now from terrible itching all over my back my upper arms sometimes on my thigh my legs or the inner thigh and so I have decided not to take aimovig ever again. I think I’ve had four or five shots and once this itching begin I decided to read more carefully about the side effects and itching was on the list. I can’t take these shots again it’s not worth it. I am taking the sumatriptan, which doesn’t, as far as I know, have any side effects on me. I’m disappointed about the aimovig but that’s life.

    reply
  • By ChihuahuaMamaMigraineur

    I hate to hear of so many migraineurs having trouble with Aimovig. I was in a two-year clinical trial with the CGRP-affecting drug by Alder Pharma, and to risk sounding dramatic, it saved my life. This is a quarterly infusion, and I had absolutely no side affects. I am still waiting for the FDA to approve this drug, and it will be worth hooking up to a drip every three months to feel as well as I did.

    That trial ended in January, and I tried Ajovy (not very helpful), and I’m ready for my second injection of Aimovig. My migraines are virtually gone, but I am left with occasional vertigo that nearly nauseates me. I am learning how not to bend over and rise too quickly, or bend and twist in any way, and how to get out of bed without nearly getting sick. Since I used to count the few days in a month that I felt well–instead of the days when I had a migraine–the dizziness is worth it.

    I’m wishing better days to those of you not experiencing relief; I recommend that you try the Alder medication when it is available.

    reply
  • By cal2

    In April, I posted about the extreme nausea Aimovig caused and now I’m adding more Aimovig side effects that I didn’t realize was from Aimovig. The longer I was on it, the more lightheaded I was even though I don’t think that adequately describes what was happening. When I’m lightheaded, I can stand slowly and stop if that feeling starts while lowering my head and it goes away while I’m still standing. That didn’t help at all! I had to drop to floors on all fours as the room started going white. It happened 98% of the time I was on it but assumed it was a new reaction to promethazine. I’d never had such a extreme reaction to it before and I haven’t had it since stopping Aimovig. I’m also adding the side effect of impaired vision. I assumed my blurred vision was from needing glasses but it wasn’t. My vision cleared up along with everything else. The vision thing was especially troubling since it seemed like my peripheral vision was narrowing along with the fuzziness. I haven’t started any of the other shots available and will be much more aware of problems and will be looking here more often. The pain is back and it’s daily and severe.

    reply
  • By daltal10

    I was admitted to hospital 10 days after my second shot with severe weakness and bouts of palpitations. All the tests they did were fine so I m wondering whether it’s all from the shot though my neurologist did not think so. In any case I stopped the shots which did not help at all in the first place.

    reply
  • By SUNshine830

    I developed Reynards and rosacea since I took my first shot of 70 mg but later it was increased to 140 mg. My neurologist said she didn’t think it was the Aimovig either.
    I had developed weakness in my left hand and when you mention weakness where was yours?
    But after a while it never went away and never had it prior to that Aimovig so I listen to my body.and was getting off. But nine months later it stopped working for me anyway so she has switched me to EMGALITY So we’ll see how this does and if any of my symptoms go away.

    reply
  • By daltal10

    I felt weak all over with surging blood pressure which came and went in waves and tremors especially in the head

    reply
    • By JDavis316

      I think I am experiencing the same thing. I just posted below.

      reply
  • By LysaB

    My Neurologist recommended Aimovig to me and sent me home with a sample injection to take that day and a script for later. I got 140 injection right off the bat. I already had a migraine the day before and that day. I had one also the next day after the injection and the next day after that. But the 2 days after the injection they seemed to be worse as I needed 2 Maxalt each day to get thing under control. So, in my mind this was not going to work. However, 18 days went by before I had another migraine. THAT NEVER HAPPENS!!!! I usually can only go about 1 week before I have one. And , I probably would have gone longer except it was an extremely difficult weekend when the migraine hit. I was not eating for long periods, out in the hot sun and did not sleep well. So , that would have triggered one or more for me anyway. I was surprised it was ONLY 1! Well, I took my 1st injection on May 6, 2019 had the couple migraines and then the next one on May 27th, 2019. Took my next injection on June 6, 2019. Have not had any since 5/27/2019. I am WOWED!!! However, I have noticed that I am more tired lately. At first I thought my thyroid was acting up, but that never lasts this long.This has been more than a month and that is usually a week or two and then I perk back up. I am dragging almost every morning now. That is not me.I will have my thyroid checked to be sure but I think it is the Aimovig. I will have to decide which battle I can live with. Right now I am ok but not sure how long I want to feel tired EVERY DAY!!! BUT, it sure feels good to be migraine free. We shall see! Maybe better food choices will help as well. Good luck to all in this fight. Remember June is Migraine awareness month. I am sure we are ALL AWARE!

    reply
  • By LysaB

    Thank you Joanna. I see my dr. in August and will discuss with him. I also see my regular dr. in Sept. So I will see how things progress by each visit with both dr.’s and go form there. Will let everyone know what information I come back with. I have gentleman dr.’s both. I will pursue the thyroid theory just in case but I suspect it is not that. But want to cover all bases to be sure. No stone left
    unturned as they say. Have a good day all and if anyone has new news please post. Since it is a new drug I think things will come to light later as more people use it. Blessing to all for better days.

    reply
  • By JDavis316

    Hi. I am new to this community but started doing some research yesterday and today on some symptoms I am experiencing and think they might be because of Aimovig. I have been 140 mg from the start which was about 7-8 months ago. At first it was two shots and last month I took the single 140 mg for the first time. I think that really kicked up my side effects First I want to say this has changed my life for the better and I am so sad that some of the things troubling me might be from the drug. I am due for my next shot today and not so sure I am going to take it at all. That terrifies me because then Ill end up with headaches again.

    I felt the effects in a positive way immediately. My triggers don’t trigger migraines. However, since starting I have had one of the worst migraines of my life. Came out of no where and can’t remember how close it was to the shot. Besides that one I haven’t really had to take any abortives which is stunning.

    Fatigue – Holy cow I didn’t realize that my fatigue might be related to this but after reading all your posts it has to be. I have barely been able to exercise which I love. Haven’t ridden my horses much at all because it feels so exhausting. YET, I can’t sleep!…insomnia I hadn’t connected either. I am so tired but can’t sleep. My neurologist recently upped my tramadol which I hate so I can sleep.

    Newest and worst side effect is this weird feeling in my head throat and chest. It feels like congestion or the tightening from the triptans. It comes in waves during the day. Pressure in my ears as well. I kind of feel like my blood pressure is up but its not really. It doesn’t really hurt but feels super strange and has created a lot of worry. Chest pain isn’t something to mess around with. It also sort of feels like heartburn sometimes so I have been taking tums and prilosec which sort of help.

    So….looking forward to feedback. Also would love to hear from people who have stopped and how soon side effects started to improve.

    reply
    • By cal2

      Welcome here! I hope it helps you as much as it has me both for learning and feeling I’m not alone. I posted about my experience on 70mg and I stopped the injection after April’s when I realized it had caused debilitating nausea. It was after that and reading about other’s experiences here that my list of side effects turned into a long list with some just nuisances and others not tolerable. The side effects left surprisingly quickly for me. The nausea was gone almost immediately and the rest by mid June when I went back to having my 24/7 varying degrees of pain and the laundry list of things that come with migraine. It was such a difference from the lighter pain on Aimovig, I considered taking it again during a few days of insanity. I’m waiting until August to try Ajovy because I’m wanting to attend my high school reunion this month and I’m afraid of potential side effects. This started 12+ years ago and I don’t think I’ve left a stone unturned trying to get better on top of everything my neuro was throwing at me. During a colonic cleansing, it struck me as amusing but those of were later crossed off the list also. Good luck!

      reply
  • By LysaB

    Hello JDavis316,

    I am sorry to here that you are struggling so. Aimovig has been so helpful for me. I do feel tired but from what you described it is nothing like that. I just have difficulty in the morning getting myself to get up. Once I am up I just feel the tiredness in my eyes and a bit sluggish. I seem to be ready for bed earlier than usual but I can manage through the day. At slow times I do feel a bit drowsy but nothing extreme. At least not yet. I only have had my second injection. However, I am on 140 mg injection dose. I am on 50 mg of Topamax still. hoping to get off that . Down from 200 YAY!. That has ruined me. At least the mind part ! LOL. Memory and speak give me difficulty but I can play that up like nobody’s business! LOL
    I did go back to tea last night and the eyes aren’t as bad today. I mix (1 bag of each) ( I get hot flashes as well) Chamomile and Sweet Dreams tea from Bigelow. Have that before bed and seems to help me sleep and control hot flashes as well. Will try again tonight and see how the eyes feel. I see the dr. in August and I’ll post what happens . I’ll see how I feel in July as well. But, total of 42 days and only 1 migraine well, I think I may just deal with the tiredness if it does not get worse than it is. For you, I don’t know. Your case is more complicated. Have you tried Acupuncture? I have a friend who gets migraines and she swears by it. Helped her immensely! Well, keep us posted and good luck to all. BE Aware month!

    reply
  • By kmripple

    I had taken amitriptyline for my migraines for years but its efficacy seemed to be waning, so we added Aimovig about five months ago, upping the dose to 140 mg three months ago.

    My liver enzymes are high so since the Aimovig seemed to be working with minor side effects, last month we decided to eliminate the Ami. Neurologist said to quit cold turkey. Honestly don’t know if part of the crappiness is part of withdrawal symptoms from ami. I had mild issues before. But migraines are now back daily.

    Worst symptom is nausea. Like nausea if I don’t eat and nausea after I eat and cramps and constipation later, rarely stops.

    Light sensitivity is extremely high daily, accompanied with intense feeling of unreality that can last minutes to hours. My concentration is shot Anxiety comes and goes. Depression is constant.

    Sometimes I feel like all my nerve endings are on the outside. On the top of my skin, my stomach lining, my scalp.

    Have sweats and chills.

    Went to my GP today and asked for a referral to a new neuro, but considering visiting my actual one one more time to see how he handles things, although so far he hasn’t seemed too eager to talk about what has been going on between visits. The list of approved neuros for my plan is abysmal, so little hope of finding a good one. My GP is sending me to a gastro to do a check, and blood work as well.

    Sorry for the long rant. I feel like I am sliding back to when I couldn’t work for a year due to the severity and frequency of my migraines. Taken me five weeks of misery to accept things are really sucking. 😭

    I am reporting to the FDA. Least I can do to help others. The official lit doesn’t mention most of these symptoms.

    Wishing you all health.

    reply
    • By kmripple

      Not sure where to post this update, so I will do it here.

      I think this terrible spell was due to the amytriptiline withdrawal. It took about five weeks but have felt sooo much better since.

      Work is absolutely crazy and stressful right now but I am handling it pretty well. Even migraines I get are at about an eight when they are bad.

      My next Aimovig shot is next week. I am curious to see how I will feel after… and praying it will be ok because I have too much work and no one else to do it.

      😜

      reply
  • By jfinclark

    I started it in February 2019 and took three doses. The first month, I felt like I had body aches (like the flu), but a decrease in migraines. 2nd month, body aches subsided, but constipation was going on… however, the number of migraines, as well as regular headaches, decreased significantly. The 3rd month, I used constipation to my advantage, as I had to go on a transatlantic flight, and liked the idea of having to use less public restrooms. 🙂 However, when I was on that trip, I had several migraines. When I came back to the US, the migraines calmed down (except for during my period. Actually, Aimovig didn’t help at all when it came to menstrual migraines, but it definitely helped the rest of the month). So at the end of month 3, I noticed something that was not good, and that I had put on 6 pounds in 3 months, and it was all in my upper abdomen (actually, the area I injected, seems to have turned from slightly fat to a straight up roll). I had actually been eating much less food, and exercising much more than I had been before (since my headaches were less frequent), so I definitely should not have been growing another fat roll! A year and half before, I had dropped about 50 lbs (and this was a much needed weight loss), and I absolutely cannot gain this back. I had to have hiatal hernia surgery, and any weight gained in that region could cause a reherniation.
    I talked to my neurologist and said that I think the stuff is making me gain weight, so he suggested Emgality. Well, Emgality seems to have an even higher incidence of weight gain than Aimovig from the reviews I have been reading. I told the neurologist that I would like to let the Aimovig work its way out of my system, and see if the migraines start picking up again (and I was going to try and lose the weight gain). Well, 2 months later and the weight gain is still very much stuck (no matter what I do), and the migraines are back in action. I am not even sure what to do at this point because I get about 14 episodes a month (not enough for Botox to be covered by insurance), and I can’t take triptans (they don’t mix well with another medication I have to take daily for another issue). I also used to take Depakote for seizures for 8 years (started when I was a teenager, and that screwed up my ovaries during puberty, and now I have a permanent case of PCOS), and I cannot take Topamax (again, was given that for seizures, and the side effects gave me more seizures, and I felt suicidal on it, and I have a permanent stutter as a result of taking it!) So what’s left? Cannabis (not legal yet in my area)? I pop way too many Exedrins and Ibuprofins (I rotate those so I don’t get too much of the side effects of those). The only other things in my arsenal that are somewhat helpful are: Phenegran (but makes me zombie-like), the Cefaly, and rubbing ‘Stop Pain Extra Strength’ on my temples and nape of neck.
    I am contemplating going back on Aimovig, despite the fact I have 3 syringes I got for free of Emgality chilling in my fridge, but… I don’t even know if I were to restart this family of drugs whether or not it will be helpful… will make me gain more weight… or since Emgality isn’t the same drug as Aimovig… I could have a month long allergic reaction!
    For the record (for demographics), I am female, 43, no kids, not on disability, have spinal issues (wherein I have had back surgery), and like I said, PCOS (Polycystic Ovarian Syndrome), so I have crazy hormones that are definitely a trigger to the migraines. I had light headaches on and off throughout life, but migraines started at 35, and have only gotten worse with age.

    reply
  • By haydenwoodlawn

    I have had 2 injections of Aimovig and just missed my 3rd one on request of my neurologist due to possible side effects, which is really upsetting because it has been miraculous for my migraines (from 25 migraines per month down to 8). I have been experiencing intermittent joint pain and stiffness in my small joints on both sides of my body: affected joints are mainly my fingers (especially thumbs and index fingers), but also sometimes my toes, knees and elbows. I am currently awaiting blood test results to rule out an autoimmune reaction. Prior to starting Aimovig, I had no joint problems. Also concerning is the disruption of my menstrual cycle which had been like clockwork beforehand. After my first Aimovig injection, my period arrived a week early with extremely painful cramping. This month I had PMS for 3 weeks. Finally, another issue within the past week has been an occasional sharp shooting pain in my jaw on the right side. Before starting Aimovig I was physically quite healthy other than the chronic migraines, so I am really scared. I have reported these side effects and I am hoping that they go away!

    reply
    • By thaddisbrow2

      Hello,

      I have been taking amovig for 6 months now. 4 months of 70 mg and 2 months of 140. At first I thought it was lowering the severity of migraines and frequency but they are back to my regular each night between 2am-4am. I have noticed a few side effect including depression, decreased sex drive and my neck has started hurting often. Massages were helping but no longer help the neck pain. I am discontinuing the use of amovig and hope to see a change with the next 30-60 days.

      reply
  • By Maureen43

    I had my first injection of Aimovig July 9 and was delighted with the results – way fewer headaches and those I did have were not as severe or as long lasting. Zero side effects. However, about 1 week after the second injection, I developed severe urticaria and facial swelling. After a week of massive doses of Reactine and other antihistamines that were not working, I managed to get on 5 days of Prednisone and a new antihistamine – Rupall. The hives have cleared up but the facial, eye and throat swelling are taking much longer and my throat is raw from coughing and I can’t swallow. Today will be my last Prednisone but I will continue with the antihistamines. Nothing else in my diet or environment had changed so this had to be a drug reaction. I have just read that while the half life of this drug is 28 days, the drug does not completely leave your system for 5 months!

    reply
    • By yogaRN

      Are you still experiencing urticaria? Did you try a different brand of injection? My experience sounds similar to yours, although not nearly as severe. Would love to hear how you’re doing, if you have a plan of action. Thanks!

      reply
  • By Coco10

    I am using Aimovig (3rd injection so far) and have gained 25 pounds in a little over 2 months. Bloating and stomach is horribly extendedand weight gain is horrible. I had to get pants 2 sizes bigger at the waist because nothing fits, 😠 and my jackets don’t zip up anymore. This is scary. I haven’t changed my eating habits, in fact I am eating less.
    Really considering quitting Aimovig as I have gained more than I lost when I was on Topiramate.

    reply
    • By Karen

      I had tried the Aimovig first and experienced horrible side effects AND increased pain with my migraines. The anxiety, tremors, joint pain in my fingers and hands, chest pounding, insomnia and very blurred eyesight to the point my glasses and contact lens RXs changed dramatically. And I still had blurry vision. But the HAIR LOSS was the WORST! Hunks in the drain every time I washed my hair. I was afraid to touch my hair. Fell out all over everything.
      Then I switched to EMGALITY. Less anxiety, joint pain, and other side effects. But the HAIR LOSS was JUST AS BAD! And it also made my migraine pain worse. No lessening of frequency either. I’m done with these CGRP meds. I’m not going to subject myself to the 3rd one-Ajovy-just to lose MORE HAIR! It’s traumatizing to see my hair fall out like this. It’s still happening but lessening as these poisons leave my system with their long half lives staying in my body long after stopping them. What a nightmare! I guess they are a miracle for those who are responders to these meds and get relief. I’m happy for them. But boy, they DON’T work for me and the side effects are SO bad I’d much rather have the migraines I get daily than go bald!

      reply
    • By tabgentry

      Me too!!! I have gained about 25 or 30 and I am so sad!! I haven’t changed my eating at all! I know it has to be the shot 😩

      reply
    • By Karen

      tabgentry,
      Go with your instinct and gut. You know your body best. If the AIMOVIG was the only different variable in your life when you gained an atypical amount of weight for no other reason, then you can presume that was the reason!
      Same with my hair loss. No other variables or possible explanations. It was both the Aimovig and the Emgality after that. The hair loss is subsiding as these drugs are leaving my system. I believe your weight gain will subside too if you decide to stop this medication. They didn’t help my migraines at all so it was an easy decision. But if it is helping you, that makes the decision about what to do harder. What a journey this migraine life is!! 😫😭🤯

      reply
  • By laurco50

    Hi. I had a case of alopecia arieta after four months on Aimovig. My docs aren’t sure if it was the cause. I read about auto immune issues being caused by the drug and alopecia is an auto immune response. I am having to get steroid injections into my scalp. I got lucky it’s under my hair. There were two spots, and one is pretty big.

    My doctor is very convinced it is not the Aimovig but we tested for EVERYTHING else, Lupus, inflammatory disease, hormones, thyroid, etc. I did not change anything else. Alopecia can be caused by stress and the hair cycle is on about a 3 month lag, and of course we migraine people are STRESSED!!! But it also coincided with starting the Aimovig. My doc just shot me with Botox which I tried years ago twice with no luck. I am on preventative meds like verapamil and topamax already. If this doesn’t work she wants to try Ajovy or Emgality. I am concerned they have the same mechanisms. This totally stinks because I didn’t get any migraines in month 4.

    reply
  • By laurco50

    I was wondering if everyone who suffered hair loss from Aimovig, Emgality or Ajovy has had it grow back after stopping the drug?

    reply
  • By Susanc1979

    HI Everyone. I have been taking Aimovig for about 6 months. The medicine is a miracle for me. I used to get about 10+ migraines a month and now I almost no migraines at all and when I do there are not full blown migraines. However for the past month, I have been waking up every single morning nauseous with diahhrea. I have had several test done, from stool tests to, blood test and ultrasounds to ensure it wasn’t my gall bladder and all tests have come back normal. Does anyone know if nausea and vomitting are side effects of the Aimovig? I’ve try to do some research, but I haven’t been lucky finding out any information.
    Thanks,
    Susan

    reply
  • By JamieK

    After one dose of Aimovig, my gums started receding and very sore. My scalp got sores that peeled and scabbed. I could not even brush my hair. My fibromyalgia flared up as well. This lasted for almost a month before it started to heal.

    reply
  • By ares

    Good evening I am at the third puncture of aimovig but I have a strong anxiety continues my mood is sad I am apathetic and a little depressed, but I am afraid of the anxiety I feel inside and an anguish that does not pass! it is caused by an increase in the bites of erenumab or by the effect of a possibly dependence on the drug by the body???

    reply
    • By Peggy Artman Moderator

      @ares,
      Thanks for joining this discussion on Migraine.com. You have a good question, but I think it might be best to consult with a professional. Mental health issues can be completely separate from migraine disease. Please try to talk to a mental health professional about your symptoms as soon as possible. Keep us posted.
      @ ~ Peggy (Migraine.com team)

      reply
  • By yogaRN

    I started Aimovig just over 1 year ago at 70mg. It has been essentially life-changing. Towards the end of summer, I had a month or two with an increase in headaches (prior to that, zero to one/month). I spoke with my provider about dose increase to 140mg. About 1 week after receiving the dose, I noticed itching on both forearms. Nowhere else, really. I enjoy had this itching since. (Injection was 10.1.19). I’m not 100% sure if it was Aimovig or possibly another medication, so have stopped the other potential culprit and have not had my Nov. dose. My doc is aware and is not overly concerned. I’m still itching. Nothing relieves the itch but ice packs. It almost feels like angry nerves. Thoughts? Have you seen this as a common reaction? I’d honestly rather itch than have migraines, but am hesitant for fear of anaphylaxis.

    reply
    • By Peggy Artman Moderator

      @yogarn,
      I’m so glad you have found something that a made such a significant change to your life! I am on Emgality and one of its side effects is rashes. But I have not heard of this side effect with Aimovig. If you are concerned about this, you can call the manufacturer to discuss it. Here is a link to their website.
      https://www.aimovig.com/#0
      ~ Peggy (Migraine.com team)

      reply
    • By yogaRN

      Thanks, Peggy! I’ve since found out that this itching DOES happen with some people and eventually resolves. I’m going to stay the course and administered another injection today.

      reply
    • By Peggy Artman Moderator

      @bbonner1980,
      I am so glad you got the answers you needed. I hope it resolves soon!
      ~ Peggy (migraine.com team)

      reply
  • By Bbonner1980

    I have been on aimovig since July this year and at first I didn’t notice anything but now I am excessively thirsty, drinking a lot of water. Also the issue I have been experiencing is a yeast infection. I just got over one and another just developed. I came online to search and see if this is a side effect of the med which I see some others are having the same issue. So does the yeast infection keep coming back? I don’t think I can be on this if so. The headaches are minimal now but the yeast infection is terrible!

    reply
    • By Peggy Artman Moderator

      @bbonner1980,
      Patients have said they have experienced a wide array of side effects. I haven’t heard these side effects mentioned. Is Aimovig helping reduce your migraine attacks? I am attaching a link to Aimovig’s website. You can call the manufacturer if you want to know more about the medication.
      https://www.aimovig.com/#0

      reply
    • By Bbonner1980

      Yes I searched “aimovig and yeast infection” thru Google and found this website (migraine. Com) as a previous comment was made about it by someone else. And I found several people on the Facebook aimovig group complaining of excessive thirst. I had neither of these before the med. I have been experiencing chronic headaches for some years now. I wouldn’t classify them as migraines but they are pretty bad. Daily if I wasn’t on a med. Yes aimovig has helped to reduce them. Thank you!

      reply