Last reply 2 months ago
Coming off Gilenya

Hi guys,

Has anyone have any experience with coming off Gilenya? I’m on it about 2 years now and have only recently discovered there’s a high risk of the MS getting worse once you come off it. Would appreciate if anyone would share their experiences please, good (if any) and bad 🙂

Thanks,
Viv

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elisabeth_turner
5 months ago

@viv89 I am just coming off it now, but with the plan to start on Lemtrada as soon as my lymphocyte levels are back to normal. I’m going for a blood test tomorrow in fact, 4 weeks after stopping. I haven’t noticed any changes, although it did coincide with school holidays and so my day to day routine has also changed so it’s hard to tell for sure. But certainly no major changes. I hope this helps. Why are you coming off it? Mine worked for the first year, but then had a relapse and slowly seem to be getting worse so trying a different drug.


stumbler
5 months ago

@viv89 , here;s some details about the issue:-

https://multiplesclerosisnewstoday.com/2018/11/27/relapsing-ms-fda-warns-possible-dangers-stopping-gilenya-fingolimod/

Please note the words, “possible” and “rare”, so don’t overthink the situation. You wouldn’t want a self-fulfilling prophecy that causes a relapse……..😉


nutshell88
5 months ago

i got furious when i found out about this risk that day 🌚 they never told me at the hospital
im still on it got no clue for how long or how to stop it safely


viv89
5 months ago

Thanks so much for all your responses.

@elisabeth_turner – I have no plan to come off anytime soon but in the next year or so I would like to start a family, so would have to come off Gilenya a few months before then. Best of luck with the blood test today, I hope your lymphocyte levels are back to where they should be. It’s great you haven’t had any major issues, please keep me posted.

@stumbler – thank you for the article, I’m defo an over thinker and always think the worst is going to happen! it’s hard not to.

@nutshell88 – I am the same, I am so annoyed as my last Neuro app was in March and it was never mentioned to me even then. I only discovered it recently by chanced when I googled the drug. It was also a known issue when I started it back in 2017 but again it was not mentioned to me and as I had just been diagnosed and was naive about the situation. I took what was recommended without question.


Anonymous
3 months ago

Hi Viv,
I was on Gilenya for over 3 years.
I am off it now 6 weeks (with the hope of starting a family in the coming months after my wash out period).
I can tell you even though I’ve only been off the drugs mere weeks I’m already suffering.
It’s only minor things like back spasms and very mild vertigo but none the less these symptoms have amped up in the past few weeks.
I see you’re in Cork, if you would like to meet and chat I would be happy to.
-Aoife


viv89
2 months ago

Hi Aoife, very sorry for not getting back to you sooner. I would definitely be up for meeting up if you still are? Maybe you can send me a PM?

How are you getting on being off Gilenya?

Viv x

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