Gilenya came with risks that I was not willing to expose myself to for quite some time. It was released in the Fall but I did not begin the medication for nearly a year and a half. Let someone else figure out the risks and management issues. I took my turn with other medications and was willing to wait even if it meant being without a treatment plan. Within the first couple of weeks of being on Gilenya I began to cough. Did I say cough? Cough and cough and cough some more. The cough did not cease until eight to nine months after I quit the medication. That said, Gilenya was extremely effective at stopping the progression of my MS and I continued with such fortunate for a year after quitting.
I loved Gilenya and did not want to stop it until I discovered that the fainting, low blood pressure, severe shortness of breath and accompanying weakness were actually side effects. My doctor did not give me a choice following my lung assessments. My lung muscles for breathing in and out were functioning at one-third of their capacity down from 100% just one year prior. I can’t say if my lungs have healed but most of the symptoms have rectified themselves and did so almost immediately.
Without Gilenya I had few options. Tysabri’s PML was too frightening to consider. I have always felt it would be my golden BB and have refused it. A new medication was coming out but it caused significant hair loss. With my thyroid acting up these days I did not want to see anymore hair going down the drain than I already was experiencing. Another year hiatus from medication had arrived until I began Tefidera in January 2014.