Gilenya concerns warning
Hi I have had what I consider mild MS for many years. I am 64 years old I have been talking Gilenya for at least 15 years before that avonex
Great results.
Till now My most recent blood test came back positive for the active JC virus . I am currently being tested for PML.
I am scared out of my mind. For the first time since my brother died from MS years ago. So , I have stopped Gilenya! As per my neurologist assistant who says Gilenya can cause the JCVirus to be active
This is just a heads up message.
I have nothing against Gilenya
, thanks so much for sharing! I am so very sorry you are dealing with active JC virus. I do very much hope that your PML test comes back negative and clean.
And, yes, Gilenya can increase a person's risk of developing PML. I am glad your neurologist is on top of things and I hope you are able to find another medication that works well for you.
I am so sorry about losing your brother to MS and I can see why that would be triggering for you.
Thank you again for sharing and do keep us posted on your test results, if you feel comfortable doing so.
Best, Erin, MultipleSclerosis.net Team member.Hi Erin, thank you for your kind words. I do not have PML. My brain scan came back no new legions. Great news!
my neurologist was not on top of this at all. He never told me about Gilenya possibly causing zJC virus to be active . I have been on Gilenya for a long time now Gilenya apparently causes JC Virus to be active.
I am 64 He never told me that most MS patients over 60 don’t necessarily need to take ms medication . I just wanted to let people know because this is the last thing I expected from a MS drug
Thanks
Bill Menger
Hi
. You might want to consider finding a new neurologist. Doctors have no way of knowing how your MS journey will play out, so you are really taking a chance by taking no medication. My father wasn't even diagnosed until he was in his 60s and he progressed quickly after that. Like you, he had mild symptoms most of his life. In his case, though, we didn't know it was MS. The bigger issue is Medicare. Many MS medications are super expensive and, once you go on Medicare, the drug companies can no longer offer you co-pay assistance. If you do continue with a new medication, you might want to meet with a Medicare specialist before you turn 65 to select a prescription plan that covers as much as possible. You can also reach out to this organization for financial help: https://www.panfoundation.org/?fbclid=IwAR38I85fWCNCX7vOPpKZJoA9yO5yZ16ZjSa3WBIZyDJoq3_go5XPjNocO2s. Thinking of you and wishing you the best. - Lori (Team Member) (Bill), first off, YAY!!!! I am so glad you don't have PML! That's wonderful news.
However, I am sorry that you were put in this position in the first place and I am sorry your neurologist did not give you a well rounded perspective of the pros and cons of Gilenya. I am glad things ended up okay, but whew! Having to go through all of that was not fair to you!
Thanks again for sharing what you learned through this scary experience!
Best, Erin, MultipleSclerosis.net Team member.
Thanks for your kind words
