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Gilenya for one month and a relapse already?

I was so happy when my consultant moved me from Rebif to Gilenya last month as it meant no longer being a pin cushion. However, although I definitely felt better without Rebif, I now have a strange numb sensation in both arms which I know in my heart, is the onset of a relapse. is this just bad luck? Has anyone else relapsed so soon after starting Gilenya? Am gutted.

sorry to hear that Tiny B. I’m starting Gilenya next week and also looking forward to no more needles. I’d get straight onto your MS nurse if I were you to let them know and in the meantime keep everything crossed that it’s just a virus you are brewing that is causing your symptoms to flare. will cross my fingers for you. x

Thanks, I actually hadn’t thought that maybe could be a virus brewing. Am so paranoid about it being a relapse after was on rebif for so long, Fingers crossed!

I’ve been on Gilenya for more than 2 years relapse-free (including time on a clinical trial). I’m guessing that it takes the body a while to build up the effects of the drug, same as it does with the injectable DMDs. I agree that you should get other causes of symptoms checked out before you worry too much about a relapse.

Can anyone start Gilenya , i have been on Rebif for 3 years and hate injecting , i am sore from injections , i had a relapse on December and i am still having problems walking .

thx

Can anyone start Gilenya , i have been on Rebif for 3 years and hate injecting , i am sore from injections , i had a relapse on December and i am still having problems walking .

I started on Copaxone mid relapse and finally shook that relapse about 8 weeks later. I thought “yahoo, no more relapses for a while” and not two weeks later I had another which I am still suffering with.

So in the 6 months I’ve been on Copaxone I’ve been relapse free for all of 2 weeks.

Having said that, my current relapse is optic neuritis and it’s nowhere near as bad as when I had it pre-Copaxone. I can still see for one thing. I can drive and work and watch tv. I could do none of that last time.

So I’m trying to stay optimistic that Copaxone will at least reduce the severity of my relapses. I had been hoping for none at all but I’ll take what I can get I suppose.

As far as I know, if you relapse while on Rebif, you are eligible for Gilenya. You should maybe give your MS nurse a call to ask?

Karen x

Agree with Karen. If you relapse on Rebif then you should be eligible. No harm in asking.