Friday 2 November 2012
Week 8. 2/11/12
I've been taking Fingollimod for 8 weeks now. It's actually a couple of days over, but I've spent the last 48 hours trying to think of something to write. Not literally, mind. I'm not that dedicated to this blog!
8 weeks in and still no adverse effects at all. I just got de jà vue then. Replace the number eight with seven or six and I'm certain it has been said before.
I haven't noticed any improvements. I have spoken to a couple of people on Twitter who are from the States who have been on Fingolimod for around a year now and they both told me that after 3-4 months they noticed improvements. The drug is about stopping relapses, it doesn't repair myelin, but maybe the fact that your immune system is suppressed, your nervous system has a chance to repair itself free from attack from my white blood cells. I'm not a scientist, so don't quote me on that.
When I started Nataluzumab (Tysabri), I did pick up after a few months, so I'm crossing my fingers on this one. Like I've already said, I am hoping this medication will slow down my disease progression, and any improvements will be a very gratefully received bonus.
Dan.
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Hi! I've read your entire blog and I'm sorry to know MS has been so mean to you. I too have MS. I was diagnosed almost 8 years ago and I've been on Copaxone, only med I've known since my diagnosis. I've also been very blessed with the best of luck because I haven't had a single relapse since then and in my last visit to the doctor he told me I'm doing so well that if I continue to improve I might be able to fool another doctor into thinking I don't have MS. So why am I here? My doctor told me that I should switch to Fingolimod on january and I've been doing some research (I had the same policy as you as to not do research, but this time I didn't follow my own rules) and I must be honest, I'm scared, mostly because of the side effects (slower heart rate, possible eye damage, liver damage, etc). You know how they say "if it's not broken, don't fix it"... but at the same time I'm really tired of the injections and I have a few nasty scars from badly applied injections. Anyway, I've rambled on enough, I just wanted to wish you the best, and I'll continue to visit your blog. See? People DO read it!! Best of luck!!
ReplyDeleteSincerely,
Manijeh (from Mexico)
Hi Manijeh.
ReplyDeleteYour doctor has advised you to switch from a drug that has kept you relapse free for over 7 years? Is he/she completely mad?
Stay with what your body knows. Injecting daily is a pain, but it's a small price to pay. Why risk your health
Good luck and stay well.
Dan.