CGRP drugs, have you heard of them?

CGRP Drugs, Have You Heard of Them?

We posed a question to our Facebook and Twitter community members asking them: “Have you heard of CGRP drugs that are in clinical trials for migraine prevention? If so, please share your thoughts.”

Here were some of the responses.

From people currently participating in or completed clinical trials…

“It has been wonderful. I’ve gone from 15 or more migraines a month to maybe 1 or 2 , . I go once a month for 1 to 3 shots, it blocks the CGRP chemical reaction in the brain that causes migraines. I have tried everything also before and nothing helped. It is expected to be FDA approved this year or next. But I believe it will be expensive unless insurance covers it. I am just so grateful to have something promising In the near future.”

“I participated in phase 1 of the trial about 4 years ago….at that time I got a one time dose of an IV that took an hour (I am pretty sure the trail has now changed the dosage to a shot every few months)….I then kept track of my migraines on a tracking device, went in every other month for an EKG and blood work. The protocol I had really had no effect on my migraines so I assumed I got the placebo……I found out later I got the actual drug. I’m hopeful that the new protocol will work better!!! Fingers crossed and hopefully they can get it released sooner than later, it sounds promising. This would be THE FIRST drug FDA approved to be a preventative treatment for migraines….all others that have been approved for treatment are drugs that were created to treat something else and then migraine is added later.”

“I participated in a study as well. I took an oral version, every day (it was Allergen’s study for AGN-241689). I have to say this new class of drug is a life changer! I have had migraines since I was 12, and now suffer from an average of 10 a month and have tried every preventative and abortive medication/treatment over the past 20+ years. During the first two months, on the CGRP medication, my migraines were cut in half and for the third month, I did not have one migraine! I knew pretty quickly I didn’t have the placebo and the side effects were very minimal- vivid dreams and sleep disruption for about the first two weeks. Once on it, my brain felt like the fog had been lifted. I have never felt so clear-headed and to be pain-free was amazing! Once I was done with the study, however, my migraines came back maybe two weeks later. I cannot wait for these medications to come to market!”

More voices sharing their CGRP experience

“I’ve been participating in Teva’s phase III study of anti-CGRP (I believe the chemical name for the drug is fremanezumab??) in New Jersey since October 2016. The reduction in migraine frequency since the first injection has been tremendous! I knew right away that I wasn’t in the placebo group, and that for me, the efficacy of this drug was real. I’ll be done with the study in January 2018, and hope that one of the four Pharma companies racing to release the drug gets FDA approval soon after. I dread going back to my painful pre-study existence. Let’s hope insurance covers the injections! The PA administering the study informed me that she has only had one or two participants who DID NOT experience a drastic improvement whilst on the actual drug. I’d say, “Everyone, rejoice!” if we weren’t at the mercy of our health insurance providers or the Pharma new drug pricing.. .”

“I just recently was enrolled in a CGRP research study in CT….I had injections for one year every month and I had my last injection the beginning of April. I go back in November for a check-up to see how I’m doing now that the injections have stopped and to see about any possible side effects…I would have either 1 or 3 injections when I went and it did drastically reduce my migraines from 15+ a month to maybe 3 or 4/mo.”

“Since my migraines are cervical and all start with neck spasm and pain which triggers other migraine symptoms like vomiting and light sensitivity I don’t qualify for studies as most typical migraine meds don’t help me anyway. Would love to see studies and even articles branch out to include cervical based migraines.”

“I did that trial last year and it didn’t help me, it made mine way worse. Good luck, I hope it helps many others!!”

Here are what others have heard & are saying…

“Four companies are developing their own versions of CGRP monoclonal antibody drugs. One just submitted its application to the FDA for approval in late May; another is almost ready to. We might be a year and a sliver away from a breakthrough treatment for a disease that devastated millions.”

“YES! Please have the decency to make them affordable and accessible. Millions of us are waiting to get our hijacked lives back…to a degree at least”

“I’ve been reading the phase 2 results and they don’t seem groundbreaking. As someone who is resistant to just about everything I’m afraid I’m not jumping up and down just yet.”

“My doctor has kept me up to date on this trial of CGRP. I am very hopeful that it will help me with my chronic migraines. The only thing that I am worried about is my insurance paying for it!!”

“Yes, my neuro mentioned them at last appt. I’ve been reading up wherever I can. She’s excited about their potential to help me & so am I!”

“It actually sounds really promising. Which I feel like there hasn’t been a real migraine breakthrough in a long time! Except Imitrex & Botox

How about you? We would love to hear more from you regarding these drugs!

Comments

View Comments (15)
  • Johurts
    7 months ago

    where have you found is best area to give the injection? I have to give it to myself and am very nervous. Are there any immediate side effects I can expect?
    I just received the epi pen..now need to just give myself the damn shot!

  • Drea99
    10 months ago

    I took my first dose on Sunday. I had some prodome symptoms this week, but managed to not get one so far. Maybe it’s helping! Fingers crossed.

  • 10 months ago

    I took my first injection two weeks ago. I had one migraine the first week and none since. I have suffered with chronic, mostly daily migraines for 30 years. So far, this drug is a miracle for me. I have even been around triggers like perfume and had no reaction at all.

    I am doing the free trial for two months while they work with my insurance to get approval. I wish everyone peaceful and pain free days.

  • brandtizzle
    10 months ago

    I took my first dose 1 week ago. Two days later I got a level 10 migraine that I have 6 days later. None of my abortive meds have worked on this one. ☹️ Going to my dr today. Anxious to hear what she has to say.

  • wnearhoff22
    10 months ago

    Would love to try this but with no insurance and only able to work 3 days a week because of the constant pain I am unable to afford meds that are hugely expensive. I wish the drug companies would realize not everyone has insurance. I use to get Botox but I don’t qualify for help anymore. Apparently 3 days a week of minimum wage is too much money to these companies. Sad world. Even more so when you have constant pain with no help and they things that help no one wants to give. Love the new options coming out but hearing about them depresses me more knowing I will no be able to use them because they are priced so high that no person without insurance can afford them. If we can’t afford insurance I can assure you that we can’t afford another expensive drug.

  • Drea99
    10 months ago

    Apply for all of the programs. There are several that you may be eligible for – if you don’t have insurance, if your insurance company declines it, etc. You can qualify for two months free while they are investigating your eligibility for the other programs.

  • Soteria
    1 year ago

    I am 6 months out of the CGRP infusion trial – here’s my results: migraines since i was 5 2-3 a month from 13-51. hit menopause and they kicked in big time – I was getting 5+ a week at times, totally debilitating indescribable pain, vomiting, intestinal issues, ER visits, major brain fog, basically no life because your life has become totally subservient to your migraines. I tried dozens of doctors and dozens of meds – Immutrex helped a little – maybe 25% of the time if i took it soon enough, and botox did nothing but make me look a bit younger. I enrolled in the CGRP study in Feb of 2016 thinking I had nothing to lose, and didn’t really expect anything to work. Guess what: IT DID. I was almost totally migraine free within the first 3 months – severity lessened by 75%, occurrence by about 80%. The few that I did get were tolerable and no longer debilitating. No side effects at all . It was a year that changed my life because I had pretty much given up. Interestingly, i have not had them come back to the level they were before I completed the study- i understand that many people do return to pre-study migraine levels, but fortunately, I have not. (I was panicked after my last dose thinking I got my life back and now i may lose it again. It hasn’t happened). I want to tell all of you who are about to give up – Imjcn and GardensatNight – don’t. Hang in there. This has already been submitted to the FDA for review and the companies expect to have it on the market by the second half of 2018. I understand that it’s not going to be cheap and I have not heard anything yet about what insurance companies will cover, but i can say that the majority of people in these studies did experience some level of relief and many did not receive the full dosage, You can google CGRP for more info – there’s tons of info on the web now.
    Just wanted to give you all some hope – there is hope!

  • Nicci
    1 year ago

    Thank you for sharing! I’m facing my last dose at the end of November. Terrified. Anxious. I’ve heard anecdotes that some people don’t return to pre-trial severity. Have not heard a personal account until yours! Oh, how I will sleep better tonight because I was chronic daily before this medication. So much like you.

    It will be different for everyone,.and I hope we will all have access to all three drugs so that we can try different options if one company’s drug isn’t the right fit, we try another.

    Botox has an action on CGRP, too. Maybe not enough? I have heard some say it stopped working for them — which sure scares others of us, for sure. I don’t know if some peoples’ bodies compensate for Botox or what.Get an immunity?

    Either way, Botox is such a hard to access option and I hope CGRP-MABs aren’t the same. Every failed non-specific drug can just depress us more — at least I found that true for me.

    I can’t thank you enough for your post. I’ll amp up the yoga, keep the diet, medications, meditations, body-scans for tension, and supplements going and pray my body takes a cue from you!

  • SamiMichele11
    2 years ago

    I just took the first dosage of CGRP orally. I’m super nervous about how this is going to go. Wish me luck!

  • Nicci
    1 year ago

    Any update? Praying for you!

  • Nicci
    1 year ago

    How is it going so far? Is the trial for acute or preventive use?

  • Soteria
    1 year ago

    Hi Sami – what has been your experience so far? has it helped?

  • Imjcn
    2 years ago

    I need a new drug!! I’ve had migraines since my teens; I’m pushing 60 now. If I had known this was going to be my life, I would have ended it in my 20’s. This is no life having migraines. My last hope has been Botox and that’s not really cutting it anymore. My doctor is ready to cut me loose. Then what? HELP!

  • Nicci
    1 year ago

    I pray you’re still hanging on eith us. CGRP-MABs are on the way! Let’s pray ASAP! You’re loved here. And I have sure felt this life was totally meaningless, too. Altogether too frequently. These meds saved my life. I’m not quite sure how to put the pieces back in place, but it gave me the wherewithal. Prayers for YOU, TOO!!!

  • GardensatNight
    2 years ago

    I tried to get into a trial, but they said I had too many migraines per month for this particular trial (go figure.) I am waiting with bated breath for these drugs to hopefully get approved and hopefully be covered by insurance. As of right now I am basically housebound and can’t go anywhere but the doctor’s office since light/sound/everything triggers a migraine with even the smallest exposure and my migraines go on and on for days. I would love to get some of the life back that I had 3 years ago before I got so sick.

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