Last reply 3 weeks ago
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.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


gijs
3 weeks 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).

Hugs!


stumbler
3 weeks 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………..

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.