@Elisabeth_Turner 

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Elisabeth_Turner

Gilenya no longer working?

So I have had RRMS since 2000. Was on Rebif for 2 years back in 2005, and that seemed to stall the progression. I started on Gilenya back in March 2017 and for the first year I felt great. But this last 3 0r 4 month I've been steadily going downhill. Brain fog, fatigue, balance issues, lung issues. Just generally "know" I have MS all the time now. I had an MRI scan over a month ago now to see what was going on, but haven't had the results yet (angry face!). I'd be amazed if they don't show any new activity though, so I'm thinking I may have to try a stronger DMT. Has anybody else experienced this? Gilenya working really well to start with then suddenly not? As far as I understand my lymphocytes are kept at such a low level (they are kept in my lymph glands apparently and not let loose!) that they shouldn't attack the myelin. But they must be very determined to escape. Anyway, I was just hoping to hear off anybody else who has had an attack whilst on Gilenya. A bit gutted to come off it tbh. No side effects and a nice easy 1 tablet a day.
@Stumbler

@elisabeth_turner , the MRI Scan will determine what is going on for you. It would be worthwhile getting in contact with your MS Nurse and express your concern over this latest development. It may even expedite the MRI results..............

@cameron

Definitely agree with @stumbler. As I understand it, MRI results are immediate, so there's no reason for delay in letting you know the results - waiting a month is unacceptable IMO.