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CGRPs (calcitonin-gene-related peptide)

looking for help with CGRP therapy

  • By melindas

    i’ve heard and read a lot about this therapy but don’t know anyone with real life experience with it…can anyone help.

    i’ve been a migraine sufferer for 38 years and have been on so much, i’m hoping this is for me

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  • By Nancy Harris Bonk Moderator

    Hi melindas,

    Thank you for your question! CGRP drugs are in the final stages of clinical trial and won’t be available to the general public until next year at the earliest.

    We have all kinds of information on this new medication, including posts from contributors who are in clinical trials, you can see here; https://migraine.com/?s=CGRP&submit=Go.

    I hope that helps!
    Nancy

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  • By 43haaq

    I took CGRP for more than 1 year in a trial in Austria. No changes occurred.

    I still have20 migraine days per month. I doubt that the therapy works, as nobody knows what is the reason for Migraine, so nobody can find out how to cure migraine at the moment.

    Do not have too much hope, because it might NOT WORK AT ALL!!!!! only 50% say that they have 50% less migraine.

    AND: your blood-pressure ist getting up real high. (not very healthy) The body ist producing antibodies, so CGRP will not do his job after a while anymore, the price for CGRP is unrealistic high. CGRP is not a good drug for me.

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  • By Nancy Harris Bonk Moderator

    Hi 43haaq,

    Thank you for sharing your thoughts with us. I’m sorry to hear you didn’t respond to CGRP. I know many patients who have seen very good results with it.

    Migraine is a genetic neurobiological disease that at this time is managed, seeing as there is no cure for it. 50% reduction in migraine days will give many of us our lives back.

    Thanks for being here,
    Nancy

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  • By GardensatNight

    So, I read the article a day or so ago that said 50% of people saw a 50% reduction (and some percentage of those saw a greater reduction in migraine). Do we know what happened to the rest of participants? Like did the majority have SOME reduction in migraine, just not as much as hoped for, or is the drug ineffective on the other 50%?

    I will be in line to try it regardless, as I am definitely disabled by my level of migraine disease at this point and any good days I can get back are a victory, but of course I am praying I am one of the ones it works for. Botox works awesomely on me. Nerve blocks are horribly ineffective (except they really piss my head off.) So I guess you just never know.

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  • By Nancy Harris Bonk Moderator

    Hi blancj8,

    I’m sorry to hear that. I’m not sure if you’ve seen this, but you can sign up for TrialLink which will notify you of upcoming studies. https://migraine.com/clinical/you-can-make-a-difference-with-migraine-com-triallink/.

    This link will take you to ClinicalTrials.gov where you can actively search for migraine disease studies; https://clinicaltrials.gov/ct2/results?term=migraines&Search=Search.

    I hope that helps,
    Nancy

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  • By GardensatNight

    Blancj8, I had the same problem. They were doing a trial near me and my doctor was so excited, but when they interviewed me, I had too many migraines per month. I was a little crushed, to tell you the truth.

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  • By Soteria

    hi everyone – I am one of those who was able to participate in a CGRP trial and it was very successful for me. My trial was double-blind so we do not yet know how much of the antibody I received, but the effect was immediate. The migraines did not stop completely but lessened in number, severity and duration. I understand that the long-term side effects are not yet know, but there were no significant immediate side effects with anyone in my trial according to my study doctor. I was in the phase of the trial that received a bit more of the antibody than those in the prior stages and the results were more positive, so those that did not see results in prior studies may not have received enough of the ‘medication’. I felt like I was given my life back, and quite frankly, I would trade length of life with migraines for a shorter one without if given the choice. There was no life with my migraines…. So I just want to offer a bit of hope to those who are wondering if this may be effective for them – I didn’t expect it to work (as I have tried everything else) and it did. My trial has ended so I am now waiting for it to be approved and available. Wishing you all hope. Hang in there.

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  • By GardensatNight

    Thank you for that bit of news.

    I was just recently bummed out again as there was a SECOND trial near me and this time they rejected me because of a comorbid condition as they wanted only people whose headaches were caused purely by migraine. Argh. Really hoping that when these drugs become available they can provide some relief.

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  • By Anthony43

    No please, my headache specialist is going to Texas next month for training on CGRP Therapy, he told me it will be available later this year. Not next! If what you say is true about it not being available until next year it will be very upsetting to me and I’m sure alot of migraine sufferers. Can you please tell me a little more about when it will be available in the USA? It will be 6 years that I have been suffering daily with Migraine I have done every possible thing including PNS implant nothing has worked for me. Thank you, Anthony43

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  • By GardensatNight

    I ask my neuro every time I go in for any “insider” news they might know about CGRP and how soon, and they didn’t have any this last time. I think the date it will come out is probably still up in the air, but my neuro said they were going to be meeting with pharmaceutical reps soon, so that seems like a good sign. I think it just depends on when it gets approved, which no one has any control over.

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    • By Ileana2712

      6 years??? OMG, it’ll be a year for me on Feb 17th and I’m going out of my mind! I’ve been diagnosed with NDPH….new daily persistent headaches.

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  • By Anthony43

    I desperately hope so, but I guess we’ll just have to wait and see. We’ve all waited this long. I guess I’m just anxious. Hope to hear some good news soon

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  • By Allison

    My neuro thought it would be available around May of this year. I too tried to get into 3 different studies but couldn’t because I have a migraine all the time, and have some other medical conditions. I was really bummed. Hoping my doc is right about May.

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  • By Anthony43

    Allison, I had called my Neuro in a panic. He told me that 2 pharmaceutical companies both told him May as well. So I was so glad to hear that you had heard the same thing!
    Crossing my fingers

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  • By GardensatNight

    Yes, I read this weekend that erenumab has been given the deadline of May 17 to either be approved or denied by the FDA (and it could happen sooner, according to the article.)

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  • By beachbumgirl

    Hi Melindas-
    I have chronic migraine x 20 years. They have increased in number, severity and frequency as I aged. I have seen countless Neurologists and 2 headache Specialists well known in their fields. I have chosen to stay with one of them closer to my home.
    When Aimovig came out, I knew I wanted to try it. I have tried multiple therapies including multiple drug combinations, acupuncture, reiki, nerve blocks both under sedation and not, etc.
    my specialist carried free samples in his office from Amgen.
    All I had to do was show up. 1st injection, Aimovig 70 mg
    27 days ago. Initially, it decreased the severity of my migraines and decreased them by half, at least.
    These injections are given every 28 days. I talked to my headache specialist last night because as the drug is wearing off this past week, I am getting nightly migraines.
    So he said on 8/23/18 we will start with the 140 mg dose.
    70 mg dose x 2. I have had no major side effects.
    My doc gets month wait for the drug because they didn’t
    Anticipate the use. That’s funny to me.

    Good luck. I hope you can start Aimovig and it works for
    You.

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    • By beachbumgirl

      Visited my headache specialist last week. I keep track of my migraines daily on paper. After he reviewed them, he stated they were 30% better last month. I will definitely take that for now. Hopefully after this Friday’s dose (140mg) , this month will continue to get even better. That is my second dose of 140mg. I still get some bad migraines. I am still out of work.
      😞 but it is progress.

      Hope everyone is having a headache-free day.

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  • By Nancy Harris Bonk Moderator

    Hi beachbumgirl,

    Few migraines, good for you! Any days without migraine pain is a good day! It’s hard to be patient, that’s for sure, but baby steps forward are better than no steps at all!

    Please keep us posted on your progress.

    Nancy

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