Last reply 5 years ago

Apologies if there have been previous discussions on Fingolimod before but I can’t seem to search back to see.

What’s peoples thoughts on it in the UK? Are you on it? What are the upsides and the downsides etc. What happens if it doesn’t work after you go on it?

Any advise would be appreciated.


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5 years ago

Sorry about the typo in the subject header 🙂

5 years ago

Can’t help you directly, Matthew, but try searching the site for “Gilenya” (trade name of Fingolimod) and you may find more information.

5 years ago

Hi Matthew, I’ve been on fingolimod for a month now and so far so good! The biggest upside is obviously the fact that it is a tablet, after 4 and a half years of needles and sharps bins. The only downside I can think of, which isn’t really a downside at all to me, is that when you first start taking the drug you have to be observed for 6 hours so that they can monitor your heart rate as the drug temporarily reduces your heart rate during the first few hours of the first dose. It’s just really boring to be sitting around strapped to a monitor! They’re also quite strict with the repeat prescriptions, you have to have a blood test to check your lymphocyte count and liver function before you get your next prescription and, partly due to cost, the current guideline for my hospital is that you can only ever have 3 months supply at a time and only hospitals can prescribe it so I guess I’ll be getting pretty familiar with my local unit! Other than that I love it! The existing data suggest it reduces relapses by an average of 50-60% compared with 30%ish for the older DMDs. As with any drug, it will work great for some, not at all for others but I’d definitely say it was worth a shot if you’ve been offered the choice- are you on any DMD at the moment? Feel free to message me directly if you have any specific questions, good luck! Jane 🙂

5 years ago

Ditto to Jane.
Been on it 8 months – no relapses since I started it.
Took me 4 days to get used to it – since then all looking good.

5 years ago

Hey, incase you’re interested, there’s a fb group for UK users (or those thinking about it) for fingolimod. It’s a closed group so the only people who can see anything you post are those in the group. I started fingolimod (after previously trying rebif and tysabri) in Sept last year. No problems for me, so far, so good. The link for the fb group is below:!/groups/220969861369180/

5 years ago

I’ve been on gilenya for a year now. So far so good no exacerbations and no side effects. Before the gilenya I was on rebif for 6 years and having to do a shot is obnoxious. I would highly recommend gilenya

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