Experences with Gilenya

Hello, It’s been ages since I last visited this site which is silly really because despite my attempts to Ignore my MS it, not so unsurprisingly, has not gone away !!

In fact it turns out that it has got worse with more damage in my head, funny thing is people have said that i was brain damaged for years and now they are right!!

This Wednesday i am to be admitted in to hospital and given Gilenha for the first time. To say that I am a little nervous is an understatement! I am not someone who is easily scared but when things are taken out of my hands, i am not a happy man.

Added to the fear of a heart attack i have been told to be ready for a few nasty size effects, which don’t sound that fun.

Anyway, just needed to let off some seam, thanks for reading this.


I’ve been on Gilenya for 26 days. I’ve had no side effects that I’ve noticed and have generally felt OK on it. Still thinking I want to try something more powerful, either Cladribine or Lemtrada.

Thanks for responding. Sounds like you are getting on well with it. Im am not rushing with my meds just changing as thing go along. Good luck

I was very keen to start Gilenya - lots of ringing MS nurses and emailing my neurologist to try and get on before I hit the danger zone, when the Tysabri left my body and I was in line for big rebound relapses. I think all that has given me a rosy view of Gilenya. You know what they say “nothing is good or bad but thinking makes it so”.

Turns out that the Avonex i have been on stopped working about 12 months ago when I had another event with more damage. Its left me with almost constant pins and needles in my face, which is fun! and i am also a bit more wobbly (Sometimes my left leg has a mind of its own!)

I am hoping that Gilenya will stop the slide but I have read some not so positive things about the size effects.


Will be very interested to hear how you get on - like I said, I think I need bigger guns to stop the slide.