Gilenya Breathing Problems?

[Mveronikas]

Am I the only person who has breathing problems associated with Gilenya?

I feel the tightness in my chest, and I am always wanting to catch my breath, and its frustrating when I can't do so. I have a paulmatory test setup in two weeks.

Am I alone??

Maddy...

[Pipes123]

I'm also on Gilenya and I don't have this. I did a quick search and found shortness of breath listed as a rare side effect, so yes, the drug can cause this. MS without Gilenya can also cause breathing issues, so your doctor needs to find out what is causing the problem.

[Goldfinch]

Yes, I have breathing issues due to Gi;lenya. Not enough to discontinue the drug, but I am in tune enough with my symptoms and normal baseline to know that this is a recent side effect from beginning Gilenya.

As a vocalist I am acutely aware of how my lungs are feeling at any given moment and my level of oxygen intake. If this is something you've recently become aware of since taking Gilenya, chances are it's the Gilenya.

I countered it by upping my physical activity and trying to get more cardio into my routine. It is tolerable most of the time but with the added awareness of oxygen hunger I have noticed an increase in fluid in my lungs as well, also resulting in affected vocalization and a frequent need to clear my throat. It can be aggravating when trying to perform until I get warmed up, but has not been so much of a hassle that I consider quitting it. As always I believe staying hydrated is beneficial.

[pballer76]

I too have noticed that I am out of breathe since starting Gilenya. I have been on Gilenya for two and a half months.
I also have this mucus in my lungs that I cough up at least two times a day. I was sick with a sinus infection when the mucus started. That was two months ago, my sinuses are fine now.

Has anyone else had the mucus issues?

[Pipes123]

I've had more mucus in my chest, but it is extremely mild, I've had much worse with hay fever. I did get two chest infections in the last two years, but they were mild. It works by immune suppression, so more small infections are expected.

I never would have thought I'd be happy with a drug that increases infection risk, but I feel so much better than I did... and my lesions are shrinking. No new ones on my last mri.