Hi everyone,
I may be soon trying CGRP antibody treatment for my Hemiplegic migraine and Chronic Migraine. I know its relatively brand new to the UK in recent years and I would love to know about your experience with it. Is it just an injection? Is it painful? Has it helped you?
I will be meeting with a specialist eventually to discuss which kind to attempt for my first CGRP antibody treatment.
Thanks.
I don’t know about Hemiplegic Migraine but for my Chronic Migraine with Aura the early results are amazing. I’ve just gone past 3 weeks and my migraines have gone from 5-6 days a week to 1 day a week. That one headache a week is easier to get rid off with Sumitriptan. I’ve been using 70ml Aimovig. The only down side is I have to be very active with Fibre and Water intake to manage constipation. Good luck 👍
I've been on Ajovy, one of the CGRP self injectors for about 10 months. It's been fabulous for me and has really reduced my migraines. Although I do find the injector pen really painful, but it's only once a month.
Hi I’ve been on Ajovy since December and my migraines have gone from 18/20 a month (some months every day)to 10/12 a month. The ones I have now are generally not as bad, no nausea and vomiting and quicker to respond to treatment (Imigran injection). This is a big improvement for me. Also the Ajovy injector pen is very simple to use and doesn’t hurt at all, think the tiniest little pinch. Most people at my hospital who are currently on Ajovy have had a positive response according to my neurologist. I’ve previously tried 10 different preventative medications and exhausted pretty much all current available options including Botox, Flunarizin and I was also part of the UK Gamma Core trial and this has been the best by far. Good luck with everything, really hope it works for you.
I was told out of 20 people , 5 would have a good result.5 would have some result. 10 would have no result. The tiny fine needle injection into tummy didnt hurt at all. I had 3- once a month.i had to pay for them as was told not avail on nhs. Someone on here told me that was unlucky as it may be avail now on nhs. I have chronic migraine ie my head pain hasnt left at all for a year. Unfortunately for me, no result whatsoever.good luck i really hope you are lucky with it. Xx
I’m having fairly good results with Aimovig. ( 140mg.)
I started in Dec 2020.
I will say last months injection wasn’t quite as effective. I did receive my Rituximab infusion for Antiphospholipid syndrome ( this is why I have Hemiplegic migraines). I think the infusion interfered with the amovig.
Here’s hoping this mints will be better!
I think you have every reason to be very hopeful.
I will be getting a telephone review with my neurologist to talk about and start the treatment aswell I was previously on Botox and it never worked now it will be the CGRP ANTIBODY TREATMENT
I think we all respond to medication differently . I have tried Aimovig and Ajovy without any improvement . In fact Ajovy made my migraines more frequent and harder to treat . According to the World Migraine Summit around half of patients see some improvement .
Good luck with it you may even find you're a super responder
Fellow hemiplegic migrainer here- I took Emgality injections for a few months and developed a severe allergic reaction. Unfortunately, I wasn’t able to see the full efficacy because of that. I have been taking Ubrelvy for about 6 months. Most of the time it works. With some of the more severe HM’s, the paralysis is still pretty obvious, but it does help with the pain. If I catch it in time, the facial droop is barely noticeable. I will say that it does make me sleepy, and in the last few weeks I’ve noticed nausea as a side effect every time I take it (no nausea previously so I don’t know what’s changed). I’ve gained about ten pounds since starting it though, with no changes to diet or activity. I’d rather have extra weight than pain, but I also worry that weight gain can lead to more frequent migraines. I’m concerned about long term effects to other organs/bodily functions with continuous use of CGRP antagonist drugs, but right now it’s all I’ve got that actually provides some relief for both hemiplegic and the more classic chronic migraines I live with. Best wishes to you on this journey. If you decide to proceed, I hope it helps.
Unfortunately Ubrelvy (Ubrogepant) is not available yet in NHS (UK) and no one is talking about approval at present. I would not worry too much about long term effect because there is not a single medicine used for treatment of migraine / headaches that are completely safe. Even taking supplements such as - 400mg B2 daily may have hidden trouble - no one knows.
I couldn't tolerate 400mg B2 hurt my bladder and aggravated everything so I'd agree with you there. Plus if bad migraines can leave lesions ( I read somewhere ), which apparently they are not sure if they detrimental but let's face it don't sound good, then migraines untreated are bad too.
