Hi all
i have a question about Fingolimod. I was meant to start last year but my daughter was very sick so I had to put starting on hold.
i have been on avonex since 2009 and I’m quite well. I can run, go to the gym etc although I feel my cognitive side has poss deteriorated. I wonder sometimes if we just adapt without realising and think what we experience is normal! I have had relapses but, touchwood, nothing awful since 2011 and 2014. My consultant thinks I should switch to Fingolimod as it offers a better overall prognosis. However, I’m really worried about starting and I am meant to be tomorrow. The side effects are quite scary! I would be grateful to hear any pros and cons that those taking have experienced.
Thanks in advance
Hi
I’ve been on Tysabri for a few years, but am probably going to switch to fingolimod. I know the information booklet about it mentioned some of the possible side effects, which always sound scary. But if you read the side effects of something like ibuprofen, they can sound scary too, and no one thinks twice about taking normal pain killers. The thing is, if you do find any side effects are bad, you can always stop it & try something else. Most people don’t have any problems though. I know only one other person on it, and he’s been fine.
Dan
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Hi Dan
very true, the listed side effects of things like ibuprofen are quite bad and as you rightly say, we don’t think twice about popping a couple of them!
Everything went ok yesterday. My heart rate didn’t slow down too much. I do have concerns about the effect fingolimod has on your WBC…0.2 is low and I do worry about catching more infections. But as you say if it doesn’t suit, I can switch! Nothing ventured, nothing gained and all that!
Good luck for when you start.
Nicki
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Thanks! Glad it went OK for you.
Dan