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@Viv89 

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Viv89

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
@Elisabeth_Turner
 

@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
@Stumbler
 

@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........😉