Tysabri and JC+
 

Hi everyone

I got the result of my JC test back today, and I am JC positive. I am up to about infusion 40 on Tysabri, and I am wondering what others are doing in this situation.

The question now, is do I continue with something that works brilliantly for me - and take the risk (which is about 1 in 400 of getting PML as opposed to 1 in 10,000 for JC negative). I am thinking I willl stay on Ty, but remain vigilant. Any other knowledge, ideas or opinions are more than welcome.

Thanks

Lyn

I'd run like a bunny as far away as I could get. But that's me and you are you. I'll pray for you and wish healing thoughts for you whatever your decision..:hug:

I'm like Sally. :o It scares me! But everyone is different and I can imagine how hard it would be to stop if it's helping like it is. Why does it all have to be so difficult? :(

Lynn,

I am with the others, i think I'd stop it but I'm not in your shoes. I have a close friend who is somewhere in her 40+ doses and she is JC positive and she stayed on it. She had good reason- it's the only thing that got her MS under control. I was scared for her before and more now but it is her life.

It is a very tough decision.
ANN

Do your research. I know you have looked up the odds, but have you looked up what happens to that 1 in 400? have you seen the heart crushing videos of those that woke one morning feeling great, and then the next unable to feed themselves? Have you contacted anyone who has gotten PML? They usually welcome contact. Have you spoken to those that have been on it long term and have had not a single thing go wrong, other than it helped?

As long as you are making an informed choice, and not one with your fingers crossed and your eyes closed I will cheer lead you all day. Please dont make such a sizeable choice based on a wish. There are too many unknowns in this silly disease. Arm yourself and then decide.

if it were me on #40 and was found to be + I would stop. Ima chikin and scared to death of that stuff, but thats just me. i wish you the best of luck, no matter what you chose.

Thank you all so much.

I really appreciate everyone's opinion - Dejibo, you have really made me stop and think - what a great post.

I have a lot of thinking to do.

Hugs