Has anyone taken this? and if so is it any good?


I was on the drug trial for two years (2007-2009),then nothing and since September 2011 am taking Gilenya.Since 2011 I have had new symptoms,but they weren’t classed as relapses.I’ve never had any other dmd.I found out after the drug trial that I had been taking the drug and not the placebo,so that’s about three and a half years now that I’ve been on it.I’m perfectly happy with this treatment.

Side effects-not too many.My white cell count is a bit too low,even though this is how the drug works,but it’s not too low to have to stop taking it.I do get colds more easily.

This site might help:

Pm me if you like.

Brenda x

I was a candidate for this, but was then told about the cardiac side effects and it put me off. Am now told that the side effects are maybe not as bad as first thought, but I think I will hold off for a bit longer until there is more data on side effects. Whilst tempted by the pill format, the injections aren’t so bad that I would risk heart problem… But no idea how common heart issues are and the screening and monitoring seem to have improved things. Don’t want to scare anyone, just recounting my concversation with consultant and nurse Brenda, what did they tell you re side effects?

Oh yes,I was well aware of the side effects,but it was either the trial or nothing and I definitely wanted a treatment,even if there was a 1 in 3 chance of taking the placebo.

With the very first dose you are monitored for 6 hours.My heart rate did drop a bit but I was fine.

Brenda x