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Anyone taking Fingolimod / gilenya?

I’m relapse remitting and was taken off tysabri in march this year as I’ve got the antibody to the jc virus. The nurses say that the neuro wants to talk to me about starting gilenya. Does anyone have any experience of this drug yet?

Thanks

Waybags x

Hello Waybags

I started taking Gilenya 6 months ago and so far it’s been great. I was previously on Rebif but had several relapses so they put me on Gilenya. I’ve had no side effects from it at all and most importantly no relapses. My left leg was very weak and wobbly and I was walking with a stick. In the last few months my leg feels a lot stronger and I don’t need the stick any more (for short-ish walks). I feel a lot better generally. Not sure if there’s a bit of a placebo effect going on or if it’s just not having the nasty Rebif side effects but all in all I’m glad they put me on it.

Good luck

JZ

Thanks JZ,

Good to hear your experience, has put my mind at rest. Glad you’ve seen some positive effects.

Waybags

I started a month ago and must admit i have more energy. However the fatigue seems alot worse at the moment. I also get very painful knee joints and have been told this is a side effect and should subside. Ms nurse actually called this morning to say i have nearly 5x normal liver function, and so fortnightly blood tests for me until they lower. To me it seems better than rebif, as like you i relapsed 3x on it. Plus no injections. Bonus

I started a month ago and feel more energetic but the fatigie seems more intense. Im also suffering painful knee joints but nure tells me it is a side effect and should subside. On another note it is a pill, and it is much easier to take than injecting rebif. ( i relapsed 3x on rebif) Ms nurse actually called today to say my liver function results from monday are nearly 5x higher than normal. Again a side effect, so fortnightly bloods for the time being.

I’ve been on it for nearly a month and feel a lot better. Was on copaxone before it and it wasn’t working for me. No injections so that’s great. The first week I felt exhausted, had bad stomach cramps and loose bowels plus headaches but that all settled down after a week.

I’m starting week 5 soon and feeling a lot more positive about things. Have never had a really bad relapse, just lots of small ones so hopefully this works for me.

Hi Waybags

I’m a newbie - I’ve only been on it 2.5 weeks and so far so good. It took a while to check out my heart first but in the end it was all a breeze on the first day. No side effects to speak of and it’s so easy to pop a pill every morning. I didn’t mind injecting Rebif but I don’t miss it now.

I have been very tired lately but I always am at this time of year. The autumn term in a school is quite manic and I get more fatigued the nearer we get to the Christmas break so I can’t say for sure that the tablet has caused it. Plus, my car is now in the garage so I have to walk to work and my legs are still quite weak from the two relapses this year.

Fingers crossed I can kiss goodbye to relapses for at least another few years.

Tracey x