Gilenya induced restrictive lung disease

[pawpaw]

I have posted this on another thread, but I am creating a new thread for this issue. This is a reported complication of Gilenya and may be the root of my issues with Gilenya.
I have inpaired Total lung Volume and CO diffusion= restrictive lung disease. This is a known issue with Gilenya but little is known about it. In primate studies, it was noted that several of the animals developed shortness of breath. In people, a number of folks have discontinued the drug due to shortness of breath. There is a reported decrease in FEV1 on pulmonary function tests which is reported to return to normal with discontinuation of the drug. The diffusion issue does not seem to normalize quickly. Two months off the drug, my FEV1 is normal but my CO diffusion is impaired.
The Novartis medical consultants are coming to Lexington today and should give me and my neurologist some insight. At least I have some explanation for my impaired exercise ability in the past year. I was beginning to think it was all in my mind or was just aging.

Pell

[ActiveMSers]

Whoa, Pell. I figured it had to be drug related. You were too fit for these issues to just pop up. Alas, being one of the pioneers always comes with risk. Urgh. Hopefully you'll get more lung function back in time. I know you are in a tight spot drug wise and BG-12 won't be available until next year. Good luck with your decision.

[pawpaw]

Follow-up Gilenya Lung Disease

My neurologist contacted the Gilenya R and D folks who maintain that Gilenya can't cause lasting damage to my lungs.
So, 5 months off Gilenya, I had the testing repeated. There is improvement and just some mild residual restriction. I wish I had baseline results to compare to these. So, I am off Gilenya permanently. With regret, I will be going back to Copaxone.
Pell