CGRP Drugs, Have You Heard of Them?
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!