began Gilenya this week, have a question

[Moosette]

Hi y'all, so here is my deal:I had my first does this week and everything went really well at the hospital, I also felt pretty good the following two days after my first dose...however, starting today, I have been feeling the need to take very deep breaths every once in awhile...I don't feel like I am out of breath, just like I need to take a deep breath, almost like I need to yawn. It happens randomly throughout the day and I'm not sure if this is some sort of Gilenya side effect or if its something else... I should also mention that many of the times that I get this feeling, I get a cramping/stabbing pain in my left side around my rib cage. The pain lasts only for a few minutes and then goes away. I have a call into my Dr. but doubt that I will hear back from him till the end of the day, so just wanted to post on here to see if anyone else on Gilenya was having similar problems. Other than this breathing thing and getting headaches at the end of the day, I am having no other issues with Gilenya and honestly hope that my complaints are nothing serious that would make me have to stop taking the drug...any advice that someone could throw my way would be greatly appreciated

cheers!

[grvander]

The first couple of weeks for me was a little strange also. I don't remember the shortness of breath, just dizziness and and a tiny bit nauseous. I think I am in month 4 now, and I only feel the discomfort of the hot weather. Hope you are doing well since your post!

[Moosette]

thank you grvander

My Dr. has taken me off the Gilenya for now and I am going to be having some pulminary tests done this week. He wants to make sure that things are ok before having me continue with the meds. He did say that in the clinical trials there were some people that had breathing problems but nothing serious developed because of it. I hope nothing is wrong so that I can go back on Gilenya because other than the breathing issues and some back pain, I felt pretty good

[Moosette]

just an update, I saw the pulminary Dr. a few days ago, he did a few tests and said he thought my lungs sounded fine and couldn't see anything wrong based on my initial exam... he did have me get a chest x ray just to completely rule out any issues so hopefully I should be getting my results back soon and I can put this thing to rest...his immediate thought on my breathing issues was that they were anxiety related, which I could believe based on the fact that I had been nervous about going on Gilenya...hopefully that is what is going on and nothing more serious. I did go back on the Gilenya after a 5 day medication holiday to see if my breathing would change (which obviously it didn't) and now have been on it for a month with no other issues. Gotta say, I love not dealing with shots every other day anymore, hopefully this is the magic drug that slows things down.

[alkalinebecky]

I am having the same problem right now and I am on day 5 of gilenya. Did it get any better for you???