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CGRPs (calcitonin-gene-related peptide)

Ajovy: Have you tried it? Share your experience here.

  • By dollarslice

    Started with a three month dose twelve days ago. I’m cautiously optimistic… haven’t had a migraine yet. But it isn’t that unusual for me to go a couple weeks without one. I get around 8-10 days a month and they tend to come in clumps. I had seven days in a row with the last day being the day I started Ajovy, so I was due for a break.

    However, my brain feels absolutely the same. Still photophobic all the time, still feel “migrainey” sometimes and I have to avoid triggers, etc. When I first tried topamax it cured my photophobia and made me feel like I couldn’t get a migraine even if I stared at strobe lights all day. I don’t get that feeling with Ajovy, I just feel normal (for me). But I guess it’s still early since the drug doesn’t kick in right away.

    Anyway, hoping to hear from someone else on this drug. I feel like a guinea pig since I can’t find anyone online or offline who is on it!

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    • By Tom Picerno Moderator

      @dollarslice I started Ajovy in December using the monthly injection. I find that the shot seems to diffuse the migraine pain. I suffer from daily migraine and they wax and wane depending on the weather and what my stimuli are at the moment. It has not stopped the migraine pain, but they are more manageable then before the shot. I am also on Botox so the combo may prove to be more beneficial over time I’m hoping. The only side effect I’ve noticed is some itchiness in my extremities but nothing terrible. These CGRP drugs are still really new so over time we will find out more about how to optimize the therapy.

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    • By Tom Picerno Moderator

      @dollarslice I started Ajovy in December using the monthly injection. I find that the shot seems to diffuse the migraine pain. I suffer from daily migraine and they wax and wane depending on the weather and what my stimuli are at the moment. It has not stopped the migraine pain, but they are more manageable then before the shot. I am also on Botox so the combo may prove to be more beneficial over time I’m hoping. The only side effect I’ve noticed is some itchiness in my extremities but nothing terrible. These CGRP drugs are still really new so over time we will find out more about how to optimize the therapy.

      reply
  • By alis7

    Hi: the real end for all kinds of migraine headaches was done in 1998 when I discoverd the migraine finger pressure points that can stop migraine headaches if we do it as must be done.
    You can see this video to learn how to do finger pressure for frontal migraine and for occipital migraine.
    http://www.medicalvideos.us/play.php?vid=1963
    then you can do at your home your migraine device as shown step by step how you can do it in this video:
    http://www.medicalvideos.us/videos-1719-how-to-do-migraine-device
    You can read this interview:
    http://www.webmd.com/migraines-headaches/news/20020319/experimental-surgery-being-used-to-treat-migraines
    Ali Sultaneh

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  • By ladiegray

    Hello
    I got my 1st injection a week ago Friday, do 8 days ago. I got my period this past cpuple of days, and per usual I am having horrible migraines. In fact, this particular cycle I have had a non stop migraine for 3 days, at what i consider to be 8-10/10 level. I hope it isn’t the ajovy. I have yet to find out when the ad is supposed to actually kick in. I also get botox injections every 3 months and after round 2 it seemed effective but now at round 4 not at all. I am feeling pretty desperate and sick of being this debilated. Praying ajovy works but so far nothing or it is making them even worse!

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  • By Joanna Bodner Keymaster

    If you have tried or been prescribed Ajovy you may be eligible for a paid research opportunity. To learn more about it, click here. – https://bit.ly/2zxHwj5

    Good luck & please continue to share your experience with Ajovy! -Joanna

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  • By amp254

    Gave myself my first injection of Ajovy on 11/27/18. Helped my chronic neck pain and has helped with migraines also. Have had migraine but pain not as severe in head or neck so difficult to tell when to take Zomig. Have just gone to bed and slept and pain was not as bad. Have had side effects of nausea, constipation and severe bloating since. Increasing in severity. Hope it doesn’t last all month. Not sure I will do a second injection of it does continue all the time.

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  • By TeaAndCrumpets

    I’ve had 2 months of Ajovy so far. I dropped Depakote dose to 250 mg (from 1000) during the first month and stopped it completely for the second month and am now due for the third. I do still get botox every 3 months and use Sumatriptan and Ergotamine injections as rescue meds.
    My migraines are significantly reduced in frequency and intensity though have had to use Sumatriptan once and Ergotamine once as I got closer to the end of the 4 week cycle. My neurologist and I agreed since the drug was new to both of us to start out with monthly injections instead of three at a time for 3 mo ths.
    My only complaint initially has been its pretty painful to inject though not nearly as bad as Ergotamine. More recently, I’ve developed a rash first on my back now on my chest that is incredibly itchy. I’me mot sure its related and the Ajovy has helped A Lot!!! I’m due for the 3rd and will probably go ahead and take it and invest in hydrocortisone

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    • By Ellen H

      To: TeaAndCrumpets

      I am not a medical person, but an itchy rash after a new medication sounds serious. You might want to get a second opinion. Ellen H.

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  • By Ellen H

    I tried Ajovy, 11/14/2018. I woke up the next day with a screeching migraine on top of the migraine that I live with everyday. It’s been 35 days, and my head is still screeching. I think I am done with Ajovy. Ellen H.

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    • By sklambrix

      Screeching is a great word! My head pressure is 24/7 for 12 years. 1st Ajovy 2 weeks ago and am much worse. Went to Stanford all these years and they have done everything they can.

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  • By 1qsljqg

    Hi. I’ve had post- traumatic migraines for 5 years from MTBI. I started Ajovy Dec 3rd after Aimovig failed to help. I have had no migraine improvement with Ajovy. I am also having side effects, including dizziness, constipation & irritability.I saw my PCP 2 wks after Ajovy started for severe ear pain. She said it was a flair up of my trigeminal neuralgia from the Ajovy. I’ve been waiting years for these medications & it’s very disappointing. The hype before these drugs came out was way over- inflated. Hope it works for someone.😑

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    • By 1qsljqg

      Wow! I have post traumatic migraines from mtbi 6y ago & TN2 4y ago. Aimovig & Ajovy no help. Both caused constipation & TN worsened. I went to my PCP 1 wk after Ajovy for severe ear pain. Needs to be reported to FDA. I feel for you!

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  • By Blitzenk9

    I took my 1st AJOVY injection last month. No side affects. I went from having 2-4 migraines a WEEK to 1 migraine and 2 headaches ALL MONTH. Just had my 2nd AJOVY injection last week. No side affects. 1 migraine this week. So far, I’m so happy and going to continue feeling cautiously optimistic. This might be GAME CHANGER for me after living with chronic migraines for over 15 years

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    • By sklambrix

      I am so happy for you……. and jealous! 1st Ajovy 2 weeks ago and I am much worse. Darn

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  • By blondie12

    I’m due for my 3rd injection in 2 days. I’ve been getting Botox for several years now and it does help, but I still get about 6 migraines a month. I have had excellent results so far with the Ajovy. The 1st month I had only 2 migraines and the 2nd month I have not had any! I also have ON. The Ajovy is not eliminating the ON pain but it is not prove to a migraine like it usually does.
    My doctor wants to do Botox for the ON only now, which will also be this coming week.
    My only side effect has been pain at the injection site, which lasted about one day.

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  • By sklambrix

    Interesting to read all the posts. I started having head pressure after chemo 12 years ago. Started tiny and gradually progressed to intense. I’ve never had even a 5 minute break.
    1st Ajovy injection 2 weeks ago and the pressure is much worse. I’m getting very panicked.
    Went to Stanford all these years and did every treatment they had. Nothing helped. Any encouragement?
    Thank you ☺️

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    • By Ellen H

      TO: sklambrix May 9, 2019

      I don’t know that I have any encouragement for you, but you said you were getting very panicked after the Ajovy and that the pain/pressure is much worse. Ajovy does have some serious side effects, and pain/migraine is one of the adverse effects. So, you are NOT crazy.

      I took the Ajovy in November, 2018, and I am still having some of the negative effects, but they seem to be decreasing. The headaches are beginning to lighten up. The digestive problems seem to be decreasing. Though my right hand still gets really cold and it hurts. I have to run warm water over it for a few minutes. That helps.

      Many other migraineurs have taken the Ajovy and have had similar problems. It’s helpful to know that you are not alone. And you might want to consider contacting the FDA and the maker of Ajovy. The company that made the Ajovy that I took was TEVA. You can contact these places and make it known to them that Ajovy does truly have negative side effects. And you are going to let them know all about it!!!

      Keep in touch with Migraine.com. There are a lot of people here who know what you are dealing with. Take care. And keep us all up to date. Sincerely, Ellen H.
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~
      REPORT DRUG ADVERSE EFFECTS TO FDA

      Adverse events may also be reported directly to the US FDA at:
      http://www.FDA.gov/medwatch

      Downloadable form:

      https://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Forms/UCM349464.pdf

      Report side effects to FDA at 1-800-FDA-1088

      MedWatch
      Food & Drug Administration
      5600 Fishers Lane
      Rockville MD 20852

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~
      REPORT TO TEVA PHARMACEUTICALS / Maker of Ajovy

      Contact the TEVA pharmaceutical company who makes Ajovy

      USMedInfo@tevapharm.com

      US Customer Service Department #888-838-2872

      http://www.tevausa.com

      TEVA NORTH AMERICA – US HEADQUARTERS
      400 Interpace Parkway
      Parsippany, NJ USA 07054
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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    • By Maria K

      I just had my 3rd injection of Ajovy 9 days ago and that night, I kept waking up with a knot in my stomach. For the last 9 days, I have been having debilitating panic attacks (which have increased in the last 3 months but never to this extent). I can barely leave the house without a rescue anti-anxiety Rx with me. I’m curious to know if your panic has resolved if/when you stopped taking Ajovy, and how long it took to feel better?

      I’ve had chronic, daily migraines for the last 15 years, and this medicine was amazing for the head pain, but I’m used to the pain and I’m fully willing to go back to the Botox and ER visits in exchange for never having another panic attack.

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  • By mrsmcelrath

    I tried it once and went three weeks without a migraine that I could not manage with either Aleve or Advil. However, once the shot wore off the migraines started in full force again.
    I am currently fighting a war with my insurance company who does not want to pay for my refills. I have gone almost three weeks past the time I should have gotten my second shot. Needless to say, my pain levels are back where they were before the shot.
    My insurance company is denying coverage and I am currently appealing it. Has anyone else had this issue?

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    • By blondie12

      Yes, my insurance (blue care network) is not covering Ajovy, but they are covering others. I’ve appealed with my doctors assistance. I have not heard the appeal results.
      Ajovy has a card to cover the out of pocket cost. So far, despite the insurance denial, the manufacturer is covering 100% of the cost.

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    • By mrsmcelrath

      I also am waiting for appeal results. I took the card from Ajovy to my pharmacy and they told me that the card only works if the insurance covers part of it. So for now I wait in misery because the migraines are back to daily and I am beginning to wonder how much longer I can work.

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  • By Lillith

    I’m currently finishing up the 3rd month of injections of Ajovy.
    While the intensity of the actual migraine pain is less, I have not experienced any decrease in frequency of migraines or headaches. When I do have a migraine I still have every other migraine symptom that usually occurs with a migraine (stiff neck, nausea, aura, etc).

    My question is this: Is anyone else experiencing constant leg pain and stiff neck? The leg pain in particular is completely new and started after the first Ajovy injection. It is getting more pronounced. In the past the stiff neck only occurred just prior to and during the migraine. Now it is a daily issue.

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    • By blondie12

      I’ve been on Ajovy for almost 9 months now. The decrease in migraines is significant, one migraine in over 2 months as opposed to 5 or 6 each month with Botox.
      I do still get Botox in my neck and shoulders.
      Ajovy has decreased the neck/shoulder pain since my migraines almost always started there.
      I have had lower leg pain since starting Ajovy. My doctor suggested drinking tonic water for the quinine. I think it is helping.
      I do still get lots of headaches, they just don’t progress into a migraine anymore. Tylenol and Motrin take care of them, which is remarkable!
      I have been having problems with constipation. I don’t know if it is from the Ajovy. Anyone else have this side effect?

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  • By Czagabby

    I’ve just gotten my 1st injection from my neurologist and went in with a 2day migraine with nausea, currently not nauseous nor is the pain towards the front of my head anymore. It is still apparent though only on the back of my neck and shoulders which for me is so much better than other places on my head
    Hopefully this monthly injection helps I’ve been in the er so many times just within this year

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