The day after - or maybe even the same day as I said yes to Gilenya, the first PML (Progressive Multifocal Leukoencephalopathy) has been connected with Gilenya.
The PML risk was one of the reasons I did not want to take Tysabri, even though I am JC virus negative (the virus that causes PML).
I'll go ahead with Gilenya, but talk to my neurologist about regular testing for JC virus, so that I can stop the medication if I get the virus. Approx. 50% of the general population has the JC virus, but it's not a problem unless you get AIDS or have to take immunorepressive medication. I know you cannot think of it this way, but I'd rather wait to use my JC virus card for something more serious, such as if my MS becomes aggressive and I need to take Tysabri - or if I ever need chemotheraphy at any point.
The PML risk is probably minimal, though, even if I had tested positive for JC virus. Up until now, there hasn't even been required JC virus testing for Gilenya, and many people with JC virus have picked Gilenya because it was considered the safe option for them. There are currently 71.000 patients taking Gilenya, so it's one confirmed PML case out of 71.000 users, which equals 0,0014%.
Still, PML is nasty. Very nasty. I prefer a 0,0000%