Forum

fingolimod

Hi

Is anyone on fingolimod? I was on tysabri for 3yrs which worked well but I felt I should come off it because of the rising risk of PML. I have 3 young children. I had my first dose last week and I think I under-estimated the side effects. My heart rate went down to 38 and even 5 days after it would rise even if I exerted myself. I feel exhausted and my old pre-tysabri symptoms of numb, weak forearms and calves have returned already!!! Back pain too! I am presuming these will all settle. Does anyone have experience of Fingolimod and if so what difference (if any) had it made to your life. Any ongoing side effects??

best wishes

Kate

Hi Kate I’ve been on gilenya (fingolimod) for near on two months now. Have to say not really experienced many side effects. I’ve noticed my hair is thinning and my fatigue has increased (could be the weather though!). It hadn’t made any difference to how I feel day to day on terms of symptoms, but then is wasn’t expecting it to. If it’s affecting your heart rate this much, I’d suggest speaking to a nurse/gp/neuro and see if they can offer any advice. I hope it improves for you, as I find the one pill a day to be so much easier than anything I’ve tried before and (touch wood) I’m still relapse free. Good luck

Hi Kate

I started in November and I haven’t had any side effects apart from the odd dodgy stomach.

Having said that, I was making improvements with my legs which I feel got a bit worse. I’ve had a couple of minor illnesses which always go straight to my legs so I’ve taken them into account.

There is a Facebook group for users of Gilenya and several users mentioned taking the tablet at night to help with fatigue. I have tried that for the last week and a bit and my legs don’t feel so weak. I haven’t had a chance to go for a walk to really test them but I feel more energetic.

I’ll see how it goes but I definitely feel different.

Tracey xx

I came off it just short of a year as I had four relapses on it. I seem to be a “one off” on here though as everyone else seems to have had positive results with it. Bumping this for you to get more responses.