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Questions for Your Doctor Regarding CGRP

During the flurry of news articles about the upcoming and anticipated CGRP drugs for migraine treatment, we decided to ask our contributors what questions they would ask their doctors. Their questions have been compiled below and can be printed or referenced for your own visit with your doctor.

Feel free to download the questions here as well: CGRP Questions For Your Doctor .

Approval and brands

Do we know which of the drug companies will be the first to earn approval from the FDA? [editorial note: No]

I am eager to know what we will call them as a whole (like we use “triptans“). While we’re on the topic, what are the trade/brand names that have already been decided on?

What is the current projected date for the first approval?

Eligibility & other medications

Some articles have mentioned possible respiratory side effects, would being an individual who is prone to respiratory infections, bronchitis, or pneumonia “disqualify” you from trying the treatment?

There will not be long term health information available for years, will individuals with other health issues be able to use it (fibro, lupus, endometriosis etc)?

Can it be used in addition to Botox or would you have to wean off Botox before being able to start using the CGRP infusions or intramuscular (im) injections?

Would the types of abortive medications you could use while using CGRP infusions or im injection be limited?

Are there any other medications that would need to stop or be “flushed” from the system?

Does this appear promising for more complicated migraine patients like those with sensory aura, brainstem aura, vestibular migraine, or hemiplegic migraine or have best results been seen in migraine patients without aura?

Many of the studies appear to focus on CGRP’s role in migraine head pain. Would this treatment affect or prevent other symptoms of migraine as well? Would you recommend it for patients who don’t list head pain as their most disabling symptom?

Is there any insight into why some people are “super responders” and others aren’t?

Route of Administration

There won’t be head to head data for years to come, how would you decide on using the infusion or im injection version of the medication?

If you chose the im injection version, would you be able to self-administer at home instead of having the doctor’s office perform the injections?

Many of the drugs are subcutaneous injections rather than IV, is there a chance we may get auto-injectors for home use?

Side effects

Is there a time frame that one should use them for, before determining if they work for them?

When will they know if it will affect immune compromised individuals?

Some articles have compared CGRP infusions or im injections to the drug methysergid, which was pulled off the market, are there valid grounds for concern that the drug will have similar side effects?

Insurance & Coverage

Would insurance cover the cost of the medicine?

Would you have to ‘qualify’ like you do with Botox (by failing a certain amount of other treatments)?

Have the companies discussed any payment assistance programs such as the one offered by Botox?

How do you predict it will work to come into the office for injections? Will we have to seek insurance approval each time, or just once or twice a year?

Because of the concern about high cost, what will the procedure be to attempt to make insurance companies cover it, when that first drug is approved?

Will you just prescribe and/ or administer (injections) and we cross our fingers, or would it be best to send letters of explanation to our insurance companies right away indicating our need?

How accessible will the new drugs, as they are released, be to the average or low income person?

Does it make sense to refer to these meds as “game changers” if only an elite few can afford them?

Do you see an effort being made to attempt to lower costs, or will some who are in desperate need simply be left out?

For those who participated in a CGRP clinical trial, do they have a better chance of getting insurance to cover it since they already know it will be successful and have established the need for it by being eligible for the studies?

Comments

  • pigeongirl
    2 years ago

    i’d really like to know the answers concerning the migraine symptoms other than headache pain. we have FHM and are chronic despite lifestyle and other management, however headache pain is not our most disabling or most frequent symptom- and we are quite able to control the pain with what we use. the rest of our symptoms are what lead to my child and i living ‘half lives’, pain being an intermittent symptom among a mess of ‘silent migraine days’. we are living with chronic nausea and sometimes vomiting, digestive shutdowns, dizzy spells, vertigo, bouts of crushing fatigue, one sided numbness weakness and occasionally paralysis, sensitivity to light & scents and sometimes sound, an eye or ear that doesn’t work due to such extreme visual and auditory aura at times, and more. THAT is what leads to the half a life. i’m unable to drive safely or even work in the kitchen without mishaps roughly half my days despite my currently dramatically reduced frequency and severity as far as headache pain goes. i DO consider my current quality of life dramatically improved over where i have been- however i’m still utterly disabled by this disease and unable to even apply for disability- despite- when i cannot drive or cut vegetables i really cannot be safe and productive at work either, at any job, as i’m also ‘dummied’ during attacks. i can’t speak coherently nor read nor write/type when my malfunctions are going on.
    so, will CGRP meds be likely to assist me? my child? i really wonder. i have a child suffering who is also on the honor roll at school. she had the brightest future before she started being knocked down by this disease, and now wonders, will she even be able to go to university? have a job where she can use her mind? or is she stuck only being herself 1/4 to 1/2 her life forever, like her mom?

  • deanna
    1 year ago

    I’m so sorry both you and your daughter are going through this!
    I started getting migraines before I was old enough to communicate, then they went chronic when I was 28, I’m now 45. It’s been a long road.
    Something that helps my nausea a lot has been Queasy Drops, seems like every time I took a nausea med I got sick!
    I’ve been using these for about 3 years and make sure I never run out! Some local stores might have them but I just order from Amazon and get them every month.
    Maybe after the CGRP meds I wont need them as much!
    We all have some hope right now, can’t wait for new treatments!

  • Joanna Bodner moderator
    2 years ago

    It is certainly no way to have to live and I am so sorry that both you and your daughter are faced with this. She is however very lucky to have a mother in her corner who knows and understands what she may be experiencing. You are sure dealing with many troubling symptoms, but please know you are NOT alone! We know just how very difficult this must be to manage. Have you outlined and discussed all of these symptoms with your doctor?

    I truly hope that CGRP treatments will be the breakthrough in treatment that so many have been waiting for! We sure hope to learn more soon! Please always feel free to reach out for support. Warmly, Joanna (Migraine.com Team)

  • pigeongirl
    2 years ago

    Thanks Joanna, we’re surviving 😀 staying fit and strong and being careful about lifestyle means that outside attack times- we’re good 🙂 we are both taking prevention, the kid’s is prescription meds+ some supplements, i’m on several natural supplements (too many comorbid conditions for some meds, too many side effects and no help from the ones i could try). my doctor is well aware and we’ve had our heads examined (brain MRI and CT scans) and my daughter has an amazing specialist as well who has her working through supplements to prevent and on meds that are helping some 🙂
    in my case attacks started in infancy (seizure and stroke like symptoms visible to my mom) so i’ve really always lived like this.
    for my kid, i suspected 2 attacks in her life before puberty. once puberty started the kid was chronic instantly, she’s down to 4-6 severe attack days/month with her current regime (whew). so yes, our care is good.
    however so often what works for prevention now won’t always, and we still have a rather poor quality of life overall. i’ve never been able to keep a full time 5 day 40 hour week schedule, and the kid often has to re-write exams at school due to prodrome/aura/postdrome? even without much pain at all our brains get gibbled during attack phases. she’s had to redo 17 tests/quizzes/exams since the school year began at the start of September. she could be there, at school, but her brain just wasn’t. that’s a very rough symptom to live with really. it doesn’t help when you want to work!
    considering it’s FHM, well we’re doing pretty good i figure. a treatment to stop the rest of the mess besides the pain would really be nice though. i’d like to be able to rely on my body. and nausea meds all stopped working on me ages ago, some herbs and EOs reduce the severity but… it’s not like it’s gone…. and i’m really sick of bouts of vertigo. i work in construction. NOT when having vertigo though… unsafe.

    i wonder how many of us are stuck unable to drive never mind work so often despite having what is considered ‘well managed’ migraine disorders. they call us well managed since frequency and pain severity are down by about 50%. we can reduce the pain to tolerable with extra strength double dose naproxen or ibuprofen. that’s not even close to keeping a job though! not when the rest of the symptoms mess you up half your days! that’s a huge frustration- even my kid doesn’t qualify for disability status despite how limited she still is when well managed. no 12 year old should be coming from school and falling right into bed because she feels so awful. she’s better than before certainly…. it’s just not good enough though.

  • Nicci
    2 years ago

    Dear Editorial Team & Members,

    Thank you for your excellent article and salient questions! As a CGRP-MABs study participant, I began searching for these exact answers. I have quite a number of leads on what answrs might look like at this juncture. That will, with your help, evolve and advance. I invite you to contact me and I will share more or, if invited, write a follow on or guest post. You are a large, powerful, empassioned membership. We have specific action items with roles to fill with patient advocates at the FDA and Institute for Economic Review Report, DOL and HHS.. We have legislation and policy to influence. I’m creating timelines, have strategic action items and roles and it’s time to recruit talent. I have some calls-to-action and I think both Migraine.com management and eager-to-act members have a lot to offer. Black box warning: I’m your warrior, I make business cases, but I also need perdonal stories. I am not the one to tell my stories, you do, or I carry them.. I’ll take the role of ‘sufferer with the strategy and cold facts.” That’s been my role in the Service member, Veteran & Family support space since 2011. My valuable story is how pivotal these drugs are. Hoe important that they accessibly, affordably , and swifly, make it to you! Knowing what CGRP-MABs can do first hand as a CDH patient with TBI and menstrual components — this may very well change your life.

  • gtucker
    1 year ago

    I am very invested in knowing any all all possible information on CGRP

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