Community Views: CGRP General Reflections
Three years ago, the first CGRP drug gained FDA approval and came to the market.1 Since 2018, five more CGRPs have been approved and prescribed for preventative and acute migraine treatment.2-7 Many in the community have tried one (or more!) of these drugs, with differing outcomes. To understand more about how the community has responded, we recently asked Facebook followers, "How have your thoughts on CGRPs changed since they first came out?"
There were so many interesting comments that we will cover them in 2 parts. Part 1 will share your general observations. Part 2 will look at personal experiences.
Unexpected side effects
CGRPs originally came to the market with the promise of few side effects.2-7 For the preventatives, constipation and injection site reaction were the two commonly advertised.2-4 Unfortunately, you have learned about many more side effects in the intervening years.
"I feel that I lost so much muscle during the 3 to 4 months I was on it. I got some relief but not full relief, so exercising became even more difficult with feeling so worn out all the time."
"I had horrible migraine attacks, stomach pain, and cramping, fatigue, dizziness, joint pain, anxiety. I could not function. I still have constipation and stomach bloating. I read it takes a while to get it out of your system."
"I would never go back on the shots again as the chronic joint/muscle pain was worse than the migraine symptoms. The weight gain and hair loss were also unpleasant."
"I had no issue for over six months and then suddenly became allergic and broke out in a rash/hives all over my body. I had to take prednisone to try to help with the inflammation."
"Such bad weight gain, and now I can't lose it!"
Update warning labels
Given the side effects you have written about with CGRPs, many of you urge updating the prescribing information included with the drugs. You might have made a different choice about taking a CGRP with revised data.
"It will be interesting to see what additions they make to the package insert as more data is collected. The hair loss isn't life-threatening, but it is really upsetting. Luckily I haven't experienced weight gain so far."
"My neurologist said 0 side effects. I hope labeling will change to disclose more information."
"They all say no side effects, just injection site reactions. I feel like it's so new that they haven't added actual side effects onto the drug list yet."
Another struggle with CGRPs is the high cost of the drugs. Many insurance plans either do not cover them or fail to cover them at affordable rates. The drug companies often have savings programs, but those come with specific requirements for access.2-7
"Cost is an issue. Depending on our coverage, it may be as low as $35 or as high as $625 per injection. Worth it, but I must maintain the monthly schedule or migraine breaks through."
"It would be great if insurance companies would cover them."
"It worked wonders for me, but after getting it for free for a year, I can no longer afford it."
"If insurance doesn't cover, there are savings programs for commercially insured patients. For Medicare, Medicaid, or uninsured patients, they all have patient assistance programs with a form to fill out and submit."
We deeply appreciate the many comments shared with this prompt. Stay tuned for part 2, in which we share your personal experiences!
When was your last migraine check-up?