Started Gilenya today

So I started Gilenya today. After what was a tedious day in hospital watching my heart rate do cartwheels, I’m home now with a stinking headache, aching body and fatigue like I’ve never known before! Let’s hope it wears off. After having tried all the injectable DMDs, it’ll be interesting to see how it goes.


I found taking it at night helped a lot with the fatigue :slight_smile: took me about a week to get use ot it, and then I really haven’t had any problems besides a few treatable chest infections

Yes, I’m going to slowly move the time I take it to the evening. I started yesterday at 10am, they told me not to immeadiatly switch to the evening but to stagger it so hopefully by the weekend I’ll be able to take it around 6pm when I take my usual raft of medication.

I’m surprised at how awful I feel. Woke up this morning and feel totally wiped out. Was planning on being back at work but that isn’t going to happen. Kind of dreading my 2nd tablet (in 30 minutes time!) but obviously I’ll stick it out.

The headache has eased but I have the runs, so drinking lots. Vodka counts, doesn’t it?

Thanks for the tip!


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It had absolutely no effect on how I felt. I wonder if that meant it was working for me, not working or had no implications for this.

Yes, who knows? Still feeling dreadful after third tablet. Vice-like headache starts around 5 hours after taking it - so having moved the time today to 1pm, it’s gripping my now like thunder! Body aches all over and fatigue is crippling. But it’s only day 3 so I’m just hoping it wears off.