My one year anniversary of taking Gilenya occurred in May, but my first MRI results and latest blood test since beginning treatment occurred only recently. Multiple Sclerosis can be a very unpredictable disease, but prior to treatment with Gilenya I averaged 2 – 3 relapses per year. My neurologists have told met hat the average gap between relapses is 18 months which I have never achieved. However, I am getting closer every day as this is the longest relapse-free period I have ever had since diagnosis. My Gilenya test results during my last office visit were overwhelmingly positive.
My liver reacted very badly to Rebif which eventually forced me to switch medications. When I began Gilenya my liver enzymes were initially high, then low. They are now perfectly within normal range. I had worried that I would have to abandon Gilenya as well if my enzymes didn’t normalize. My neurologist was also concerned about a possibility of PML with Gilenya. She tested me for the JC antibody and the results were negative.
Most surprising were my MRI results. While the scan of my brain showed no new activity (yay!), the scan of my spine showed no damage at all. Yes, this is good news, but it was perplexing. For many years I have suffered occasionally from the MS Hug. It is widely believed that this symptom is caused by lesions in the spinal cord. My neurologist said that perhaps it is caused by a lesion too small for MRI to detect, but I do wonder if perhaps it is just part of the muscle spasms I frequently experience.
My new neurologist still seems just as fantastic as she did for my last visit. I’m very happy with the switch to her, and I feel safer. And my test results are incredibly promising. Hopefully Gilenya will work for me for a long time.
Are you happy or unhappy with your treatment? What test results have surprised you?