JCV positive
Hi just back from an appointment with my neuro and he is suggesting I come off tysabri as I am JC positive and the results of my titres show I have alot of the virus I am just over the 2 year mark so have to make a decision about whether to continue with tysabri or switch to another dmd would love some advice from anyone who has been in a similar situation or those who are taking tecfidera as this is the treatment he is recommending......

Hi @lisa89 - I'm in exactly the same boat. Had Tysabri for over 2 years, but now JCV+... I'm also working out what to do. Gilenya is an option for me, I'm also interested to hear about Tecfidera... did your neuro mention why they are recommending Tecfidera? Tysabri has been my friend these past two years so feeling nervous about a change. Did your neuro suggest how quick you should be making the change?
Hello Hope you don't mind me replying too. I have been on Ty for over 5 years and am JC+. Neuro says it's highly likely I've had it since childhood, looking back at my medical history it all makes sense. Anyway, after being told that news I had to decide whether to continue or not, that was about 2 years ago. I was one of the first to be tested for JC in this area. .Ty worked and still does, yes I have symptoms to contend with daily but have had only 1 big relapse in that time. Yes, I've had exacerbations of symptoms when it's really warm but my lesions have neither increased in size or number in the past 3 years, Ty is doing it's job. I am monitored closely, I have MRIs every 6 months (I think it's every 6 months - I can't remember!) Last time I saw Neuro we talked about JC virus and the possibility of coming off Ty to go onto Gil. He said there would need to be at least a 3 month period of no Ty or Gil so as to give the Ty enough time to be out of my system, but in that time it would be highly likely that I would suffer a relapse as everything the Ty had been holding back would have free reign to attack my system. He believes I'm strong enough to handle that possibility but as the Ty is still working I'm continuing on it. I have an appt with my Neuro in March so fingers crossed (in my head if not in reality) all is well and stable. Thank you for reading (and letting me ramble) Rachel x