Last reply 9 months ago

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.

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9 months ago

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).


9 months ago

@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………..

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