JCV
Hi All,
I've been on Tysabri for almost 3 years and my JCV has always been negative but from having a negative result in February I've just had a medium to high positive result. Since being on Tysabri I haven't relapsed so I'm worried about having the treatment stopped. Do you think I would be better off staying on Tysabri or stop the treatment and risk relapsing?
Still waiting to see my consultant but worried what it all means.
So, three things: 1) The level of JC virus and the length on tysabri make you more prone to the dreaded PML. 2) It's a conversation you need to have with your neurologist to weight the pros and cons together; 3) If you decide to stay, you will be probably monitored more closely, if not - you have option to switch (versus - a couple of yrs. ago when it was the end of the road). Hugs!
@boggy , the risk associated with Tysabri and the JCV status are well known, which allow for action to be taken before the risk reaches a critical level. Your JCV status may have changed from negative to positive, but it's the "titre level" which determines the scale of the risk. Personally, I would regard it as unprofessional to advise you that the risk was now medium to high without recommending a course of action. This is a recipe for worry and we know what that can do to our MS! Should you stay on Tysabri or stop the treatment and risk relapsing? Well, that's a question for your Consultant, who needs to weigh up the risks with you. If you have any concerns, call your MS Nurse and ask them if you should be worried...........