Gilenya, day one

Today, after six weeks of insurance runaround hell, I am starting my first dose of Gilenya. Gilenya is an oral treatment, the first for Multiple Sclerosis. I have been on Interferon treatments since 2004: Avonex then Rebif. My side effects from the Interferon were getting so bad that I was regularly missing a day of work a week, was completely down for the count on weekends. I am now completely out of vacation and sick time. I have become a recluse, because I never know what activity might bring on another spell of fatigue or nausea. My friends have been very supportive, but I still feel guilty every time I say no to something. This fall I reached a point where I didn't know how much longer I could comply with my treatment recommendations. I began to think that letting the Multiple Sclerosis win, no more treatments, and let my body accept the disability that has been hanging over my head for the last seven years.

My neurologist thought that this new treatment, Gilenya, might have fewer side effects for me, and might improve my quality of life. And briefly looking at the list of side effects I initially thought that this would be a life-changing treatment. Side effects for Gilenya include: headache, flu-like symptoms, stomach ache, vomiting, "morning sickness," back ache, fatigue (one person described the fatigue as bone-numbing for a few hours after taking the pill), coughing, diarrhea, lowered resistance to infections including chicken pox, cold sores, sinus infection, urinary track infection, kidney infection, upper respiratory infection, liver disease, all of which I dealt with while taking interferon. Then Gilenya adds some more possibilities: lowered heart rate, dizziness, hair loss, temporary blindness, high blood pressure, weight gain, increased susceptibility to fungal infections, possible fatality from herpes infection, and chronic bronchitis. I'm not so worried about the death side effects, but vainly, I am concerned about the weight gain and the hair loss... well, and all the infections. It's so hard to look at a treatment positively when it can cause so much more sickness.

Anyway, I'm going, in about an hour, to receive my first dose. Because of the lowering of heart rate that happens, it is required that I am observed for the first 6 hours after taking the pill. I was nervous and anxious before, but I think I am ready to start this new phase. Pills not needles.