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

Hi,

did you know that you could still get the PML on Gilenya/Fingolimod? sorry to say

Best wishes

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you can, but the risk is small so its really about how much of a small risk you are willing to take.Personally, I’d rather take that risk over relapse over relapse. Been on Gilenya over 2 years, no problems and one flare up of old symptoms and thats it. but of course your mileage may very

According to the Barts Blog Gilenya is the best treatment for helping to avoid the rebound effect.

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I just started Gilenya a week ago. So far so good apart from feeling whacked!

Hi Waybags

I had to stop Tysabri after 2.5 years, I had been JC positive the whole time but my levels went up and my neuro wasnt happy. After a washout period I started Gilenya, I did have a relapse at the start, I then had 2 good years followed by 2 massive relapses and am now going to start Lemtrada.

In my opinion, Tysabri was the best drug I was on - I never relapsed compared to 3 (although you could say 1 of those was a rebound) on Gilenya. But in saying that I know plenty of other people that have had no relapses on Gilenya.

As with most treatments, there is a good facebook page - UK Fingolimod users

Good luck