If you tested positive for JC Virus.....

would you immediately stop Tysabri?

would it depend on the number of infusions you had?

would you stay on for one year regardless of the JC Virus results?

This is just me. I'd stop immediately. The positive test is a warning that something is not right.

When we did the JC assay, I told the doc then and there that it would be my deciding factor. If mine were positive I would have stopped. Fortunately, mine was negative, and as I fight my monthly sinus infection....

I'd stop too.

i'd research pml a bit, might stop, might not

I've read enough about tysabri that I wouldnt even try that medication in the first place.

I think only you can make that decision for yourself. Questions you would have to ask yourself: how high is your tolerance of risk? How bad is your MS? Are some risks worse than others? Good luck.

I too am too afraid to start that stuff in the first place. If I tested + for the JC virus, I would stop immediately. I would then continue on to have some indepth conversations with my MDs and the MS center as well as doing research on line and speaking to others who have the PML infection as well as those who are risking it. either way, its not an easy choice.

thanks everyone!

I did test positive for the JC Virus!

I have only had two infusions, but after the infusions, I had all kinds of side effects.

I get this dizzy, off balance feeling, hard to hold your head up feeling; and a feeling of shaking on the inside, heart pounding, like some kind of internal tremor, and nausea.

My neuro's nurse practitioner said it sounded like anxiety, and called me in Klonopin.....but it is three weeks since my second infusion, and I still get this heart pounding out of my chest feeling. I have never had anxiety before!

I also have had a period of a 4-5 day long migraine about two weeks after each infusion. I do have severe migraines frequently, but not usually for 4-5 day in a row.

So......I kept telling myself, I will try to deal with all of these side effects until I find out my JC Virus results.

I know that by statistics, I would be 'safe' from PML for the first 11 infusions, but now knowing that I am positive, and all the side effects that I am having, do I want to put myself through 9 more infusions?

it's not an easy decision to make.
you need to do the old benefit vs risk analysis. and, research pml and T for yourself so you feel comfortable with the info.

good luck to you.