FDA investigating case of progressive multifocal leukoencephalopathy (PML) in person who was taking Gilenya. Great. Here we go again. That was my first reaction to that news since I take Gilenya. And because I spent nearly three years on Tysabri fearing PML. I have never been tested for the JC virus that reactivates in people with suppressed immune systems causing the development of PML. When I decided to stop taking Tysabri, I did it because I didn’t feel it was working for me. I continued to have progression. But I’d be lying if I said that the risk of PML wasn’t a factor as well. Since my decision was made, I didn’t feel the need to be tested for the virus. Now I want the test. It’s probaby better to know.
At this point, we don’t know what part Gilenya played in this case of PML. The information released so far notes that the patient was on other immunosuppressant drugs before starting Gilenya, had multiple courses of steroids prior to starting and while taking Gilenya, and may have had lesions atypical of MS on their MRI. So I’ll wait for more information to come out. Read more about the case in this article.
The question I’m always asking myself with my MS meds, is how much risk am I willing to accept? I accept the risk of seizure with Ampyra. I accept the risks of heart problems, eye problems, and infections with Gilenya. Now will I need to add PML to that list? Weighing the risks of my medications versus the risks of my MS progressing isn’t that easy.
What I do know for now is that I fear MS more. I’ve experienced what it can take away. But some drugs with less severe side effects would be nice. I have enough to worry about.