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CGRP for Migraine: Setting the Right Expectations

CGRP for Migraine: Setting the Right Expectations

During the 60th Annual American Headache Society (AHS) Scientific Conference in San Francisco, I had the distinct pleasure of sitting down with Dr. David Dodick, professor of neurology and a headache specialist at the Mayo Clinic in Phoenix, Arizona. Dr. Dodick is the Medical Director of the Headache Program as well as the Concussion Program. He is a past president of AHS and of the International Headache Society. Dr. Dodick has authored more than 280 peer-reviewed publications and coauthored 8 books.

Dr. Dodick has been highly involved in the research and clinical trials of Calcitonin Gene-Related Peptide (CGRP) inhibitors, the first class of medications developed specifically made for the prevention of migraine.

CGRPs – are they really game changers?

With much fan fare surrounding CGRP inhibitors, I felt that it was important to ask Dr. Dodick about setting expectations. While trial results have been very promising, this will not work for everyone. There is still no cure for migraine. In this video, he shares the discussion that he has with his own patients.

CGRP clinical trial results

“The way we define clinical response is going to be different than in clinical trials and it’s going to be the patient who defines whether or not he or she is responding.”

A patient trying the first CGRP inhibitor has a 1 in 5 chance of not responding at all, but “the good news is that there is more coming.”

Optimistic about the future of migraine treatments

Dr. Dodick admits that he also has to set his own expectations of how his patients are going to respond. Truly an optimist, he’s disappointed that a patient doesn’t have more relief based on the clinical trial criteria, but to a patient who experiences a decrease in the average severity of their migraine can be truly life changing. “I have to adjust my expectations because patients are grateful for anything you can do for them.”

“I’m excited. I’ve never been more excited.” Dr. Dodick concludes that the future has never looked brighter.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • kvaldez814
    1 month ago

    I have had migraines for 35+ years. Cannot take tryptans as they cause cardiac issues. Have been in fioricet for years and did Botox for about 2 years. Now I have a different insurance and they won’t cover either of these meds. They state I need to go thru the trial of other options-ibuprofen, naproxen, etc. that I did 30 years ago. Any ideas from anyone on what to do now?

  • Katie M. Golden moderator author
    4 weeks ago

    Hi @kvaldez814,
    I do have some resources to share with you! Dealing with insurance denials is complicated and so hard to manage when you are trying to live your life with migraine disease.

    Insurance companies use step therapy as a way to delay paying for more expensive treatments like Botox. They want you to prove that less expensive treatments don’t work for you. It’s a ridiculous insurance access barrier that’s unfair to you and could potentially cause your health to decline as you are forced off treatments that help.

    But you can fight this! You can appeal their decision, provide medical records showing meds you’ve tried in the past, have your doctor write a letter of need stating that you have gone through X number of drugs, etc.

    Yet this can be daunting. The Patient Advocate Foundation can help you with this process. They are a non-profit that offers one-on-one case management. You’ll have a dedicated person who can guide you through the appeals process, fill out forms and talk to your insurance company on your behalf. They have a program specifically to help those living with migraine.

    Here is their website: https://www.patientadvocate.org/migrainematters

    I hope this helps.
    Best wishes,
    -Katie Golden
    Migraine.com Moderator

  • Dancing Willow
    1 month ago

    I’ve been using Aimovig for several months now and haven’t noticed a real difference. The last couple months I have been doing 140mg. I’m almost a week overdue for my injection and I’m wondering if that could be why my migraine has been worse the last few days. I see the doctor tomorrow and hope he can give me the injection since my insurance hasn’t approved it yet.

  • Katie M. Golden moderator author
    4 weeks ago

    Hi @dancingwillow,
    Was your doctor able to give you your next injection? With the new CGRP inhibitor drugs, the recommendation is to try it for 6 months before deciding with your doctor that it isn’t helping you.

    If you get to that point, there are two other CGRP inhibitor drugs that you can try that are formulating slightly differently than the one you are taking now. Likely your doc would want you to wait a month in between switching from one to another.

    On the insurance issue, I wanted to provide you with a resource that can help you to navigate the financial assistance programs offered by each pharmaceutical company. CHAMP, a non-profit coalition, has put together interactive guides that are specific to each CGRP inhibitor drug and how to deal with your insurance company. Here’s the link:
    https://headachemigraine.org/treatment-financial-assistance-guides/

    I hope this is helpful.
    Best wishes!
    -Katie
    Migraine.com Moderator

  • Joanna Bodner moderator
    1 month ago

    Hi there again, Let us know how you make out tomorrow & if your doctor is able to give you an injection. For some on Aimovig it has taken a few months to begin to notice improvement, so I truly hope some relief may be around the corner for you. In case you are interested, we have a forum page dedicated to those that have tried Aimovig. You can read more here if you’d like. https://migraine.com/topic/tried-newly-approved-aimovig-share-experience/ Keep us posted if you can & let us know how things progress.

  • nightingale70
    2 months ago

    I have a 13 y.o. daughter who has been suffering from debilitating migraines since she was 7 y.o. and continues to suffer now. I was wondering if this treatment can be used on teens and what if any the side effects are. For years her neurologist only treated her with a cocktail of Advil/Benadryl/Zofran. Recently she changed her to Amitriptyline nightly which seems to be working somewhat but with daily stomach pain. I would love to know that there is something better out there for her. Last school year she missed a total of 70 hours of class time with a LOT of push-back from her school. There is only 2 teachers that can sympathize with her because they also suffer migraines. The rest talk about her behind her back to other students and teachers and give her an extremely hard time and have actually told her that she’s “faking”! It’s absolutely heartbreaking when you see and know she is trying her best!!

  • Katie M. Golden moderator author
    2 months ago

    @nightingale70 – It breaks my heart to hear what your daughter is going through. Clinical studies are currently being performed to evaluate if these new CGRP inhibitor medications are safe for children. Unfortunately, I don’t have a timeline for when this could be made available for the adolescent population.

    As far as the horrible treatment she is receiving at school, there are some accommodations that can be made for her under a 504 plan. The articles below and the link to a forum on this topic may help you to better understand what protections you can put in place and how to talk to teachers and friends about migraine. I hope this helps.
    Best Wishes,
    -Katie Golden
    Migraine.com Moderator

    https://migraine.com/blog/special-education-services-children-migraine/

    https://migraine.com/topic/migriane-the-educational-system/

    https://migraine.com/blog/children-migraine-11-things-parents-need-to-know/

    https://migraine.com/blog/stigma-hurts-kids/

    https://migraine.com/news/kids-respond-differently-to-preventive-treatment/

  • SanFrancisco
    3 months ago

    I have a masters degree in clinical studies design and administration plus a law degree. I’ve worked in healthcare my entire career (prior to disability). So when you dissect the anti-CGRP results you will see that they claim 60% of patients greatly reduced their number of migraine days. However the Placebo arm had the same result in approximately 39% of people. That leaves only about 21% that are real, actual responders. So if you’re not responding to any of them (like me) this is probably why. Migraine research has miles to go before they sleep.

  • Jlevsen
    3 months ago

    I have tried so many things over the past 40 years. Some that have created or triggered other life long side effects such as turning on the kidney stone factor. However I keep trying. I found the first cgrp did not work. I am thrilled to say the second has changed my life. I still get a migraine now and then, still stay away from triggers, but now I have to learn to live with more good times and how to be productive during those good days.

  • Joanna Bodner moderator
    3 months ago

    Hi @Jlevsen this is AMAZING to hear that you did not give up and gave another CGRP a try AND that you are experiencing such awesome results! I truly hope that nothing but the success continues. After enduring the pain for so many years…you deserve nothing but relief! Keep us posted on your progress if you can. You can do so here.

  • Kim DH
    10 months ago

    As a migraineur, expectations are high, but so is the fear that, as has happened so many times before, it won’t work. It’s so exhausting to get your hopes up with each new treatment you try, only to have them dashed when they either don’t work at all, or quit working after only a short time.

  • hobbitgirl
    8 months ago

    I think most of us can relate to the fear/hope duality of trying new things.

    I have to have hope, because without it, life would not be worth living (now that family grown and gone)

    Every time I reached the end of my rope, I reached out, found something new to try, learned from it, very slowly improved…

    As time has gone on (31.5 yrs), I have identified more triggers (over 50), and more things that help. So while I still get them many times a month, they aren’t as bad as first 18 years or so….

    I do clinical trials because even if the treatment doesn’t help me, it furthers the science, which give my suffering purpose.

    I have also become a student of Buddhism, which is not a religion (you can keep your God!), but a psychology and way of life. When my migraines are bad, Buddhism helps me cope, find some sense in it.

    Which means, Hope “works” for me. Don’t give up….

  • mengucci
    1 year ago

    I have participated in a CGRP study at Jefferson Headache Center, in Philadelphia under Dr. Silberstein for the past 5 years. The past 4 years I have received the drug. It has been life changing for me. I was getting, at the least, 1 migraine/week. I now get less than 1 migraine/month. My quality of life before the study was nil. I now have my life back. This medication is truly groundbreaking and I hope they can develop a different form that more migraine sufferers will respond to it. For all migraine sufferers, it’s worth a try.

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