Hi All,
The calcitonin gene-related peptide (CGRP) antagonists seem to have demonstrated quite impressive data in phase 3 clinical trials for migraine. Just wondering if anyone here has been involved in a clinical trial of a CGRP, and - if so - could speak to their experience?
Thanks,
Giles
Just a word of concern. These drugs are great and in fact I have have found great relief with Amitriptyline. But I’m concerned about the focus on migraine in MAV. I suspect that a healthy brain can reach a migrainous state if subjected to poor sensory information due to a peripheral not central issue. Maybe some people’s brains are more susceptible than others but my concern remains that we should be finding out what the root cause is, not papering over the cracks with medicine. My neorologist said to me at last visit I should consider titration off the meds after having had a period of stability. But I’ve since relapsed and I’m thinking ‘not a chance’ until the condition has properly stabilised.
Please let me know if you found any studies on cgrp that are recruiting, thanks!
I would be interested in hearing from anyone who has taken the new monoclonal antibody drugs for Vestibular migraine. How do you feel? Which one are you taking? Any side effects? I read there are very minimal side effects… and does it help with the non-headache symptoms of vestibular migraine such as disequilibrium, feelings of movement, tinnitus, stiff neck, photophobia and phonophobia?
Thank you.
Hi, I’m on Ajovy and have probably been on this for 5 months.
I have found a great improvement in headaches. I was already on pizotifen for a little over a year which helped me a great deal with vestibular symptoms such as head movement intolerance, floaty feeling, visual vertigo. I’m currently in the process of weaning off that to see if Ajovy holds strong. I have high hopes.
I have honestly had zero side effects with Ajovy. Not even skin irritation. Nothing. It’s actually great!
I still have mild symptoms most days, and have an issue with akinetopsia which I’m trying to figure out, but on the whole I’m ok.
Go for it, the meds of the future my neuro said.
I’m not on the direct CGRP antagonists (the monthly injections) but instead on a receptor antagonist rescue med - Ubrelvy. It’s like night and day for me. I hope to never be without it again.
I’m on my 2nd month of Emgality. I seemed to respond to it somewhat the first month esp with going to stores, supermarkets, however the 2nd month was not so good. For the first 8 days I had a nauseous head then for a few hours felt ok, then I had a bad injection site reaction and rash on my thigh where I was given the shot. Didn’t notice much with the sensitivity to movement (especially when going to stores or supermarkets), sounds, lights etc then the third week going into fourth (where I am now, I feel ok this morning). So far a mixed bag. Called my current neuro’s office last week and was told they are not changing anything over the phone, and that Emgality takes time to work. I have been feeling let down that my Nortriptyline seemed to not work as well as a preventative and have started decreasing it. Something about these CGRP injections, that I’m not totally convinced and that CGRP is needed in other places in the body so is it really a good idea to block it? And also if you block it, is it 100% blocked or is there still some circulating in the body where it can still give good functioning for other purposes? I would like to know if I can decrease Nortriptyline and start another anti-depressant like Cymbalta or Effexor for this? I wanted to stay with the anti-depressant line as this affects me so much in my daily life and makes me feel down, anxioius etc, so not a bad idea to try a med that will help me with both co-morbidities. However I have a sensitive system, so of course going through side effects with any new drug is hard to take when you work as a teacher. Still as far as CGRPs, I really want to feel that I can trust them, but not totally convinced yet. I have vestibular migraines and also daily migraines - the headaches that ruin my day. At the end of this 3rd week, I’m feeling sort of ok but I haven’t entered a store yet. Even when I do, I wear two glasses, FL-41 and sunglasses over the other and still get sick.
https://www.frontiersin.org/articles/10.3389/fneur.2021.799002/full
It’s only a small study but there’s hope that the anti-cgrp meds may effectively treat VM just as well as classic migraine.
Interesting that the injectables seemed to work better than the oral drugs, which makes sense to me.
I had no luck with both Ubrevly and Nurtec, but would definitely be down to try an injectable. Would like to see this study replicated using retrospective chart review data, like with UK biobank on a more massive sample size.
There seems to be a better success rate with these new anti-cgrp meds than other preventatives - with all types of migraine. I think 7 out of 10 people get some kind of relief ,even if small. Although it doesn’t work for everyone and some get side effects. Some people have said the new injectables have completely turned their lives around, the improvement is so drastic. You don’t hear that very often with the standard preventatives - 40% reduction is usually the aim.
Since they aren’t being digested in the stomach, it probably means less chance of side effects and also better absorption in the body.
I am wondering and have some concerns about these CGRP injectables. If migraine is caused because of the dilation of blood vessels, and these CGRP’s constrict them, couldn’t that be dangerous? Wouldn’t that raise our blood pressure? I am worried that healing and getting relief in one part of my body could have serious implications and long term effects on another. Somehow I am not totally sold. Also just the newness of these drugs and not having a followed up study like there has been on other drugs leaves questions to be answered. However I have noticed that the oral meds like Nurtec, Ubrelvy did not work for me and that the injectables do seem to help some. And why do they say that these injections are not habit forming when I approach near the end of the month, I start to get all my horrid symptoms back? It’s as if they come back with a vengeance! I wish there was an oral pill with healing effects rather than an injectable pen which induces big pain when inserted and also causes injection site reaction and rash. I’m trying my best to keep hope alive for my 3rd round of Emgality, if I get it this week.
There have been reports of blood pressure being raised.by the anti-cgrp meds, it’s an acknowledged side effect. If you’re worried about it you could ask your doctor to check it for you, or purchase a meter to check it at home if you can afford one.
All meds for any condition come with risks. The ones used to treat heart conditions can affect the kidneys,for example, but it’s considered worth it for the positive effects as long as blood tests are done regularly to check the kidneys don’t get too bad. The only thing about the cgrp meds is that they are new so the long term effects aren’t necessarily known, unlike the other meds used for migraine. I’m comfortable with the risk if it gives me my life back.
I’m currently on Emgality for vestibular migraine - am 2 months in and no improvement symptoms yet, am hoping it just needs more time to work
Have you had any side effects?
I’ve read that it can take up to three months to work for some people.
@MissMigraine no side effects (a small increase in appetite at the beginning which my neurologist said was possible but it went away after a couple of weeks) and no injection site reactions either! Yes I’ve heard a few people say 3 months aswell! I’m nearly at the 3 month mark so i guess the next couple of weeks will be interesting!
I’ve been on Ubrelvy for a couple of years - 100 mg when needed. I’m one of the lucky ones these drugs work for. I think I read somewhere it’s about 1 in 4.
I’ve been on a monthly injection of Emgality for 8 months. Side effects were weight gain and blurred vision. Benefits were reducing my 2-3x/week Ubrelvy usage and dropped it to a few times a month. Way less dizziness, brain fog, nausea and pain. By far my best migraine med in the 18 I’ve trialed over the last five years.
I’m not perfect. I’m also on an overdose and advanced schedule of Botox. But with that and the two CGRP I hold a more than full time, stressful job and do ok.