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What time do you take Gilenya?

My doctor says I should take it in the afternoon or morning, but it does make me sleepy sometimes. I'd like to take it before bed, but he is worried if it makes my heart stop. I've already been taking it for at least 4 months.

I am not a doctor, but unless you have heart problems then I think you should be able to take it at night. I take Gilenya and it does not make me sleepy at all - are you sure it is not something else? Good luck


Hi @kimcarlson I am surprised your doc is worried that gilenya may "make your heart stop". All it can do is put your heart into a temporary AV block (basically a funny rhythm), that only happens when you start monitoring (hence first dose in hospital). Yes this can be dangerous, thus the monitoring. But it is temporary. I did have this happen to me, Heart rate dropped to 45 (from 80) (lucky me, I seem to be a shit-magnet at the moment, but that is another thread! Ha!), but it only happened with this first dose. I had the second dose monitored - it was fine. I also found gilenya makes me tired. From the people I talk to, I think this happens to about a third of us. I am now taking it at night. I started taking it in the morning (because this was when it was given at the hospital), but a couple of weeks later (after emails with my Neuro) I started taking it an hour later each day. Took about a fortnight, but I now take it just before I go to bed (hence, if it makes me tired, all well and good). I have had no heart issues since the first dose, and have now been on it 3 and a half months. Good luck! I hope you are able to make it work for you! If changing the times does not help - could this be a MS fatigue issue? :-) Jas