Forum

Tysabri users please . . . .

Hi, I’d made the decision I wanted to start tysabri and now iv received my blood results back and I’m positive for this JC virus. Well that’s put a spanner in the works. Gutted, upset, slightly hysterical at one point, confused, lost, angry. Is anyone out there on tysabri even though they are JC positive?? Just don’t know what to do, feel like everytime I pick myself up and put a smile on my face they take a bloody sledge hammer to my knees and knock me back down again.

Hi Madge, there are lots of people with JC+ and on Tysabri, they say that the drug is well worth trying even though there is a risk. The risk is very small indeed and your bound to worry about it as it all sinks it. There was a post yesterday about the same subject by Rachaelsmum and some excellent replies that I hope will make you feel better about Tysabri. Wishing you well, Mick x

The post is called " Panicking" sorry i dont know how to put the link to it on here.

Just back from Tysabri infusion no. 39 (over 3 years) and I am JC positive. However, the blood test wasn’t done until recently and I wish it hadn’t been. The odds of developing PML gets worse the longer you are on it, I was told recently that it was about 1 in a 1,000 by my neurologist but that is not right, it is about 1 in 400. MS Barts blog has lots of information if you are interested. At the time that treatment was discussed I was told by a MS neurologist to hit MS hard, which is why I went this route. There are other options now such as Alemtuzumab and B12 which may be better for you. I suggest that you find out from your MS team (Neuro/MS nurse/GP) what your options are as funding can be an issue, if like me you are relient on the NHS to pick up the tab. Try not to worry too much (easier said that done!), as stress and MS don’t mix well. All the best, Peter.

Can My son receive Tysabri treatment in a NY state prison?? I am so concerned they will give him something else?? and who can I contact, any and all help will be greatly appreciated! Thank you, Julie

You’re on a U.K. forum Julie Sorry, but it’s doubtful anyone here will know. Please correct me if anyone does know the DMD prescribing guidelines for US state prisons. Sue