bkboo 10/03/18
Last reply 3 months ago
Gilenya and shortness of breath

I have been on Gilenya for 4 years and this year I have experienced being short of breath, some days its ok and some says Its awful. I have had a Pulmonary function test which was normal. My doctor has me signed up to do further tests to find out whats going on. I think it may be Gilenya, I know its a rare side effect….any one else experience shortness of breath?

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3 months ago

Hi @bkboo and welcome.

Check out this document from the FDA (Halfway down Page 5) :-


I’m not sure if this helps, but you’ve done the right thing consulting your Doctor.

3 months ago

I occasionally do and have been on Gilenya nearly 3 years now. It doesn’t last long for me and randomly occurs even when sitting still or at night. Quite unsettling at times but I haven’t bothered seeing GP about it. If it gets worse or more frequent I will.

3 months ago

this year its progressively gotten worse, waiting to see whats going on with further testing….

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