New Treatment Experiences Part Two: No Happy Ending Yet
Migraine treatments are getting a lot of attention lately. With new options on the market, people in the migraine community have expressed feelings of hope and hesitation. On Migraine.com's Facebook page, we reposted Holly Baddour’s piece, “CGRPs and Migraine: Navigating Wellness for the First Time in Years.” Her article sparked so many reactions. In a separate Facebook post, we also asked the Migraine.com community if you had talked to your doctor about trying new migraine treatments.
In part 1 of this 3 part series, we shared comments from migraine community members who spoke out about how these new treatment options have been life-changing. Unfortunately, there is no one size fits all when it comes to migraine treatment and some of you have not found relief from trying these new treatments. Here are some comments from those who have yet to find their happy ending.
“The shots are quite painful.”
One downside is the pain of the injections. A few members have mentioned that the injections are uncomfortable and leave a pain that lasts a few days.
“My only issue is that I’m now getting a lump and bruising at the injection site that lasts for days.”
“I recommend icing the injection site for 15 minutes prior to the injection.”
“I wish I had known more before agreeing to the injections.”
Several of you had side effects that made these new medications not worth it. For some, you experienced an increase of migraine attacks after starting this new drug. For others of you, these new medications are causing complications with medications you’re currently taking for other conditions.
“I wish I had known more before agreeing to the injections. By the time I drove home from his office, I had to bury my eyes under a weighted pillow. That is where I spent most of the next five days.”
“I would have preferred no effect. Before CGRP (brand name), I had 14 migraines a month. After two months of CGRP (brand name), now I have 25+ a month.”
“These meds increased fibromyalgia symptoms without positive effects on migraine.”
“CGRP (brand name) caused bad constipation.”
Constipation was a concern brought up by several who tried two of the CGRP brands. Unfortunately, because these drugs are so new, some of the side effects, such as constipation, are only now becoming widely known. That is the risk of trying something new to the market.
“CGRP (brand name) was a miracle drug until I had to go to the bathroom. Seriously, nothing worked. My whole system was so stopped that bending over would cause food to come up. The pain relief was a miracle but the constipation was close to deadly. Took more than a year to recover, still not quite right.”
“My fourth CGRP (brand name) injection is in the fridge but I am done. It hasn’t helped and it caused bad constipation.”
“Medicines that blocked these proteins in mice led to kidney failure.”
Some of the additional side effects may not present themselves until more time has passed and the medicine has built up in people’s systems. One such concern mentioned by a couple of you is potential kidney failure, which happened among mice that were given similar medicines.
“Are patients on the CGRP medications regularly monitored for renal function? Were the participants in the study tested for GFR, creatinine, albumin, metabolic acidosis? When I tried to research this aspect of a CGRP (brand name), it was proprietary. Is the info available now? Medicines that blocked these proteins in mice led to kidney failure.”
“I tried CGRP for three months without success.”
More than a few of you shared that you were able to try the medicine, but didn’t notice any change. You didn’t feel any better or any worse. You then wondered if maybe the drug required more time to have an effect on your body. Granted, everyone’s body will respond differently, so that’s a tough question to answer. But it seems that the majority who did try the drug and had a positive effect noticed its efficacy shortly after starting its course.
“I tried CGRP (brand name) for three months without success. Was that enough time for the drug to work? Will a higher dose improve the results?”
“I have done CGRP (brand name) for three months. The doctor said is it helping. Honestly, I didn’t think so.”
“I tried CGRP (brand name) first, and thought I found a miracle drug. Unfortunately, it only lasted from October to March with no pain. After that the migraines started creeping back in, and then by July, I had to go ER after nine days of a severe migraine.”
“Unfortunately I cannot relate... no effect after five months...”
What has your overall experience been with the CGRP treatment(s)?
Hear more from the community
We want to say thank you to everyone who participated in this conversation. By opening up and talking about these new medicines, we are all helping the community make better-informed decisions moving forward. Thank you.
How much has your migraine disease changed or evolved over time?