JCV Positive
Hi All,
Went for my Tysabri infusion today and got the news I’m JCV positive. I know this doesn’t mean the end of Tysabri right now and the nurses tried to reassure me, but just feeling so disappointed about it, broke down in tears in the middle of the infusion unit 😔 I’ve been feeling so much more stable since being on it for the last 6 months, not symptom free by any means but no new symptoms. I was only diagnosed in June last year and only just feeling like I’d made some peace and acceptance with the situation and now being hit with this has really knocked me.
That's some real bad news I don't wish to ever receive, thinking of you , I am tysabri and negative if I had the chance to go back and change my meds I would defo try lemtrada , have read so many success story's with it some people basically cured no meds and relapse free after a couple of yearly rounds look into it it may be worth the risk but there are also some horror stories same as there is woth tysabri. Wish you best..and if lemtrada is offered research it could be a game changer buts it's a gamble .allbest
I was also informed about the positive JCV results just on the second infusion 🙄 Like yourself, I burst into tears. I’m just thinking if further scan will be stable, I will argue my case and try to stay on TY as it’s doing it’s magic so far 🤞🤞🤞 Stay positive 💪