Hi everyone got results back from neuro I have lesions on right side ofmy brain and been asked if I want to start Fingolimod (Gilenya but side effects were quite scary ,left me not knowing what to do and stressing . I had relapse and it affected my legs , my left leg more and I’m using a crutch to get about been like this for 8mths . I had rrms don’t know if I’ve still got that or because of the brain lesions does that mean my ms is progressing ? really finding this hard to decide what to do . Thanks xx
Hi, been taking since Feb 13. All good so far so good. Side effects none! Be positive.
I’ve been taking Gilenya now for 4 years (the first two years were with the drug trial),then I had a gap with no treatment for two years.During the drug trial I had no relapses.When I started taking Gilenya after a gap of two years without treatment,the amount of lesions I had had doubled.Since starting Gilenya in September 2011,I have no new lesions.I’ve had new symptoms,but they weren’t classed as relapses.
The side effects sound scary,but I really haven’t had any worries.My heart rate dropped with the very first dose and then has been ok.They monitor your heart rate for the first 6 hours when you take the very first tablet.Before you start the treatment you will see a cardiologist.
The only side effect that bothers me is that I get colds more easily.
You will be very closely monitored with regular blood tests,eye examinations and neuro visits.
Have a look here:
You might find it useful.
You can pm me if you want.For me,Gilenya really is a wonder drug.
Let us know how it goes.Take care,Brenda x
I’m waiting to see if I can start on it. I’m not too worried about the side effects as, until you try, you don’t know if you will get them or not. All you can do is try it and see. If it doesn’t work out you can always try something else. I’ve been on Rebif for 4 years and didn’t get horrendous side effects with that so I’m thinking positive. Keep smiling, that’s my attitude.
My view is that MS can be pretty nasty if left unchecked and your neuro probably has good reasons for making the suggestion. Just because side effects are listed doesn’t mean that you have to get them.
I’ve been on Gilenya for 5 months now with no ill effects at all. I’ve had no relapses since I started. In fact I haven’t felt better since being diagnosed. I’m feeling positive for the first time in years.
Hope this helps. Best of luck.
I started taking Fingolimod 3 years ago. I was on a trial for 2.5 years and then got the drug when it was licsenced in December 2012. I have RRMS and the drug has changed my life. I have been symptomm free for 3.5 years. I take one tablet a day, its easy no faffing about with injections, no worrying about injection sites ( I used to be on Rebif) . I feel fine. To be honest I don’t worry about the side effects, I don’t really read the label. because I just find myself stressing and thats no good!! There’s side affects with every drug. If Fingolimod s available for you I would definately recommend you go on it.