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CGRPs (calcitonin-gene-related peptide)

Any one with Crohn's and ulcerative colitis tried CGRPs or input ?

  • By chantrelle

    Hi,

    I will be starting Aimovig in December, despite being very inconfortable with trying any anti CGRP migraine treatment. I have ulcerative colitis and it is mainly what’s adding to my worries of trying the anti CGRP treatment.

    But since I have an average of 27 days of migraines / month and that the Botox has mostly only reduce the intensity, I fell I don’t have much choice.

    I would really like hear about any one who have tried anti CGRP that also have ulcerative colitis (or Crohn’s).

    Thank so much for any in put,

    reply
  • By Nancy Harris Bonk Moderator

    Hi chantrelle,

    That’s a great question, thank you for asking it. I don’t have this, but know others who do. Hopefully they’ll be along shortly to share their experiences with you.

    Best,
    Nancy

    reply
  • By chantrelle

    Here is one of the articles I read that made me worried about taking anti CGRP while suffering from an chronic inflammatory bowel disease.

    http://practicalneurology.com/2018/02/calcitonin-gene-related-peptide-monoclonal-antibodies/

    It states that : “ In animal models administered CGRP antibodies, there was mucosal damage, suggesting that CGRP antibodies could contribute to loss of gastrointestinal mucosal integrity and predispose patients to inflammatory bowel disease.”

    I do not find any where any advice for patient who already have an chronic inflammatory bowel disease.

    reply
  • By Nancy Harris Bonk Moderator

    Hi chantrelle,

    Thank you for sharing that. I just read the article, very interesting. I haven’t seen any suggestions for people with inflammatory bowel disease either. I will keep my eyes open and see what else I can find out.

    Nancy

    reply
  • By chantrelle

    I saw my neurologist at the end November few days before I received the Aimovig.

    Back in August, I had told him about my concerns regarding taking Aimovig and the fact that I have ulcerative colitis. At that time he was able to tell me that to his knowledge that there wasn’t any problem, but that he would look into that to make sure.

    Therefore, when I saw him, he was able to reassure me that there were others with inflammatory bowel disease taking Aimovig and no problem were reported.

    I started Aimovig on December 6th and so far so good.

    I’m due for a scope in a month or two with my GI. Which is reassuring as we will be able to see if something as gotten worse.

    As for the results on migraines in my case it is to soon to see if it makes any difference.

    I’ll make sure to report here if I have any issues related to Aimovig and the Ulceratice colitis.

    reply
  • By Nancy Harris Bonk Moderator

    Hi chantrelle,

    Thank you for the update! I look forward to your next one.

    Nancy

    reply
  • By MadWithMigraines

    Hi @chantrelle I know this is an older topic but I thought I’d respond with some thoughts.

    I don’t have IBD, but I have IBS which makes my GI more sensitive to changes and when I get attacks, they’re mostly – 80% + – of the D variety.

    That said, now that I’ve been on Emgality for 2 months – soon to be 3 – my GI became sluggish and my IBS problems turned almost exclusively to C.

    Nothing else has changed about my lifestyle so I know without a doubt that the Emgality is the culprit.

    I had heard of having constipation being a side effect of CGRPs but Emgality was supposed to have less of the problem.

    The change to IBS-C isn’t terrible but for me, constipation can affect my migraines and so this is something that I’m considering for the future.

    Hope you the best!

    reply
    • By chantrelle

      Thank you for your reply. Actually I’m doing fine with Aimovig. I’m putting my up-date just bellow.

      reply
    • By Nancy Harris Bonk Moderator

      Hi MadWithMigraines,

      Thank you for sharing your journey with us. I find it interesting how differently we react to medications. I’ve heard fewer complaints of constipation with Emgality, but that doesn’t mean it can’t happen.

      I wonder if the GI tract will calm down after this dose? I’ll keep my fingers crossed.

      Please keep us posted on how you are doing and hope you have a low pain day,
      Nancy

      reply
  • By chantrelle

    I’have been on Aimovig 140 mg since November in a few days I’ll take my 5th dose.

    In January and February, I believed that Aimovig might have had a negative impact on the ulcerative colitis. The symptoms appear to be worse about 7 to 10 days afters the shots and got better towards the 20th day. But when the U/C is active it also flutuactes so it is hard to know if it only coincidental. So I decided to make a U/C symptoms calendars to reccord things objectively.

    After the March shot I did not experience that worsening of the symptoms. Anyways, I’ll keep my U/C symptoms calendar for a few months. Hopefuly, it will show that the worsening of the symptoms were only coincidental.

    As far as the results, I do get a few more migraine free days a month an some migraines are easier to manage.

    reply
    • By Nancy Harris Bonk Moderator

      Hi chantrelle,

      Thank you for the update. As my migraine expert says “any day without migraine pain is a win.” I do hope this continues and the GI issues stay calm.

      Wishing you a low pain day,
      Nancy

      reply