Hi
Does anyone have any experience of taking Gilenya???
thank u 
x
It works for me with no nasty side effects unless you call fatigue vanishing and now having to much energy a side effect.
Also sensory in left fingers is coming back which is funny as all they ever review DMD’s is cutting down relapse rates not what other things they can do
Anyway a good place to ask as some have been on Gilenya for years is here
I have been on Gilenya for 12 months now, no side effects, except for having no monthlys, maybe my age lol! I firmly believe the drug isnt working for me as I have been experiencing bad MS symptoms, had my MRI now waiting for the results, hope to get them asap to find out for definitely that Gilenya not working for me and to start a new DMD if so! Gilenya has worked for others!
H x
Hi, Seems to work for me, had two small do’s over the past 2 years but nothing major. The only thing i think is what would i be like it without it?
I’ve been on it since November 2013 and so far so good. My lymphocytes are very low but my neuro doesn’t want to take me off it while I’m feeling okay so he says we will discuss it in clinic in June. I’ve just had my very first UTI which wasn’t good and there may be a connection but I’ll see what is said at clinic. I had been getting backache for a couple of weeks which I had been blaming on Gilenya but that has disappeared since I have been on antibiotics so I think it may have been bladder related pain. (Note to self - don’t blame everything on listed side effects!)
I’ve had no other side effects though and it’s so nice to just pop a pill every morning rather than doing injections.
Tracey xx
Started it in May 2013. Stopped taking it last month after my fourth relapse on it. It has been disastrous for me. My problem is my MRI scan doesn’t back up what’s actually been going on so I’m stuck in limbo (literally) right now and being off a DMD for the first time in ten years. Showdown with my neurologist on Wednesday!