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Stopping Tysabri~ Tested Positive for JC Virus

Posted: Sun Jan 30, 2011 2:15 am
by T19
Anyone in the same boat as I am?
I just found out Friday evening.
I had to talk with Biogen and many others as a result.
I'm not sure what to think or what will happen next
I know alot of people carry this virus but they told me it's not good that I tested positive while on Tysabri.

Can anyone share any input in this. Thank you~

Repost...Help Pls

Posted: Mon Feb 07, 2011 2:43 pm
by T19
Has anyone here tested postive for this?

Do you have any info to offer...

Also is the test for JC Virus different than a PML Antibodies test?

Thanks so much

Posted: Mon Feb 07, 2011 2:57 pm
by ikulo
Hi T19. I'm sorry about your situation! Others have shared their stories about PML in the Tysabri forum here: http://www.thisisms.com/forum-11.html

Wishing you the best.

Posted: Mon Feb 07, 2011 7:50 pm
by brave
Hi T19
I just saw my Neurologist today. I was on Tysabri for one year then was on break for 4 months . now he wants me to re-start taking Tysabri and ordered JC test for me.

I asked him many questions about JC test and how the result might impact his decision on putting me on Tysabri? here is what he says
if JC result is negative so chance of PML would be very low and no need to pause in between (like I have been on break for 4 months)
if JC test result is positive then chance of PML is higher and patient has to take break after 12 Tysabri infusion
but one way or another , test result doesn't mean that you have PML or can't take Tysabri.

it will take 2 weeks to get test result back but he doesn't want to wait for test result, he already ordered my Tysabri.

I hope this helps
No need to say that I didn't know about JC test until today.

brave

Posted: Tue Feb 08, 2011 5:55 pm
by T19
Thanks for your thoughts everyone and the link. I appreciate it