Has anyone any experience of these new types of therapies which have been developed in recent years and is on sale in USA?
As usual UK appears to be dragging its feet on this.
Most of us are desperate for improved treatments. I've only just heard of the possibility of this and wondered if others had more light to shed.
Thanks.
I only have experience of the CGRP Injector from Ajovy presume it's different?
Yes, this is an oral medication licenced in America for use as both an acute and preventative treatment and can be used in conjunction with the injections. Obviously I don't know too much about it, hence the question.
I think this is the sort of thing I've been angling for from my neurologist. I keep hearing of new acute treatments and my triptans stopped working over a year ago now. I'm on the CGRP which worked reasonably well for a year, but they took me off it for a month, as is customary, and since finally getting back on it it hasn't really been working so I've had 24 days of migraine out of 30 and the triptans aren't working too. I even asked if I could have botox at the same time but they said they've only heard of that happening in America 🙄.
I thought about having botox alongside emgality but thought I'd have to pay for it. Emgality worked for 2 months then I had a relapse over Christmas when I thought it was all over but my last headache only lasted 1.5 hours so I don't know what to think now.I just want to lead a normal life and I expect that so do you. The only way I can keep triptans working is to use sparingly and suffer many days unmedicated.
I do wish we weren't so slow to adopt things. I'd gladly go on a trial if it were ever offered. Most of us are absolutely desperate.
Yes I am only allowed 8 days a month with any kind of pain relief, so to not get any relief on those days makes it even worse. I've not got down to less than 8 days a month on any kind of preventative and I've never been able to work because I have other chronic pain disorders. I just feel particularly sorry for my children because I can't look after them as well as should.
When I looked into getting Botox at the same time as the CGRP I assumed the NHS wouldn't cover it, so I looked into private options. But the cost was ridiculous one place wanted £250 for first consultation to "gather information' then they wanted another £250 for another consultation for a reason I couldn't fathom, then they wanted £600+ for the actual Botox which they couldn't even tell them how many injections that would cover. The second lot I found wanted about £500 with a free consultation, but I told them I normally had about 35 injections on the NHS and they wouldn't tell me how many they would give me which makes me think it wouldn't be any where near enough. I met someone recently who had Botox privately for migraines and he was only given 4 injections. Either way I can't afford that amount of money every 3 months.
Unfortunately because I have so many other things wrong with me they won't accept me on any trials soI've given up on that particular avenue.
I realise that this may not be an option for you, but as far as I'm aware The Migraine Centre in London offer a full dose of Botox for a set price. Of course in post covid times, travelling can be fraught with difficulties and the cost may be prohibitive, but it's there none the less. We can only hope that in future there may be more options for those of us unlucky enough to suffer from this awful affliction.
Oooh really, I'm in Cambridge so getting to London isn't too difficult and The Migraine Centre sound like a safer bet than anything else I've encountered so far. Mind you I still can't afford it but it would be good to investigate it further just so I know the lay of the land. Thanks for letting me know.
Have tried the CGRP injections. Unfortunately in my case, the side effects outweighed the benefits. Severe ibs issues and fatigue and lightheaded most of the time. Also the fact that it was going to be $600.00 an injection was just not affordable to me at this time.
Hello. Sorry to hear that you had side effects with the injections. Miraculously I have absolutely no side effects at all, just an up and down response to Emgality. As you are in America, have you not heard about these oral medications which work in a similar way?They are licenced in US and have been for 2 years. Those of us in Europe have no access at present, although I believe EU is looking at licensing these in the future. Sadly, because we were stupid enough to leave the EU, the UK is dragging its feet again.
It would be interesting to hear from someone in US who has heard of or has used this new medication.
