Hi all. I’m hoping I’ll get some advice for you great people. I was on Beta inteferon for over 10 years. Then I’ve now been on Tysabri for over 2 years. It’s been working fine, but I’m JC positive. I have the choice of changing to Gilenya. I don’t know what to do. Should I change, should I stick it out on the Tysabri and hope for the best or should I wait for something better than Gilenya to come along? Thank you for all your advice.
I am sorry that you are faced with this one, Rini. My path is similar to yours in some ways (bit less than 10 years on beta interferon, 2+ years Tysabri). JC negative when last tested, but who knows? In your shoes, I would be wanting a clear steer from the neurologist about what she/he thinks is the best bet overall, given how my MS tended to behave, how I had responded to Tysabri, what the risks were etc. We are well into the territory of ‘no right answers’ here, obviously: there are way too many variables in the equation for that, but the neuro’s professional judgement is one piece of information to feed into the decision process, and for me that is always an important one.
I hope that, whatever you decide to do, you will feel comfortable with your decision and be able to draw a line under it and get on with your life.
I have recently had by 2nd Tysabri infusion and have just been told I am JC positive. I know I haven’t been on it as long as you have, but personally if I had been on it 2 years and if my scans still prove Tysabri has slowed things down then I would carry on with it. I have been told that now I am JC positive not to worry because a person is still at risk of getting PML whether positive or negative.
I would say if it is working for you carry on. But get advice from your MS professionals.
Good luck with your decision and try not to stress