JC virus?

[Stacer]

I've been on tysabri for 31 infusions now. I was just tested for JC virus antibodies (as part of a study). I don't think I will stop if I'm positive, but I'm sure I'll be pretty happy if I'm negative.
How many of you have been tested? What were the results? Did it change anything in your head?

[ru4cats]

I will have my 17th infusion one week from today. My neurologist signed me up for the Stratify II study just after my diagnosis. I tested negative at the first blood draw last August and just had my 2nd in September. I haven't heard back as to the results, but I plan on staying on Ty even if I have converted to positive. Right now I am negative for all three "indicators" of increased risk: JC negative, <24 months on Ty, and no other use of immunosuppressants (sp). Even if I were to convert to positive, I would still stay on Ty. It is such an easy drug to take and, so far, is the most effective at slowing, if not stopping, progression. For me it's a no brainer!

[John M. Gromek]

Starting tysabri in 4 days. I am looking forward to positive results. Soon ampyra.

[Scooter24]

I tested pos a year ago have been on ty since june 10, I will not stop taking it, I have no problems with it and feel 1000% better than I did on copax and avonex, I feel the risk is more than worth it for the quality of life it has given me.

John I am also on Ampyra , between the 2 it has made a big difference for me, good luck

[HCB]

I tested positive in December and went off TY after 32 treatments. Was put on another drug and boy did I have horrible relapses. Went to the MS clinic at Vanderbilt who said I could go back on TY in August and will be on it for 6 months-then every other month for 6 months-with MRI every 6 months. I feel really comfortable with my decision

[D_HOLLAND]

My son was dx'd in April of 2007 - he is now on #51 and is doing amazingly better than when he was first dx'd.

He tested positive about 3 months ago but didn't even consider stoping Tysabri - more afraid of going back to the way he was than the chances of PML

[LL60]

I have refused to do either test for the JC virus. It wouldn't change a thing, I would still stay on Tysabri, so no point.

I just had #29.

[Holly62]

PML

I have recently had a relapse. MRIs are still a mess. My Dr. wants to start me on Tysabri. I found out Friday that my friend's sister just went into a care facility due to PML.. She is no longer able to talk, but can understand. Her prognosis is two years. How in the world can I write off the 3 % chance of PML when it has hit home? I can not make the decision to what seems like a death sentence for a few years of relief. Help!

[LL60]

Holly62 -
I am so sorry for your friend's sister. I hope that she can be treated sucessfully and in the future return to her normal life.

Going on Tysabri can be a very very tough call to make. You can play with the numbers and make them say to you whaterver you want. I read it as 97% don't get PML and that is an A+ at my school.

If you trust your doctor you can go with him, still making sure it explains it all to you. You can get deep into the NMSS website and these message boards to learn about the pros and cons. Both real and imagined side effects.

If I have read and retained information correct, there has never been a person with MS who got PML from Tysabri in the first 12 months of treatment with it. You could always try it for a year and see what sort of help it gives you and then go from there.

I know this must be so hard for you, with having some one right there in front of you who has the very worse outcome you can get from this drug. Here on the messge boards are some, me included, who have had the very best outcome this drug offers. That probably doesn't make it easier, only harder.

Keep reading, keep asking questions of your doctor and on web sites like this. Please let us know what you decide. And please let your friend know that all of here are so sorry about her sister.

I hope that after 170 cases, that doctors at least have a better idea how to correctly best treat PML after Tysabri now and that she will quickly recover.

[hotwing]

YOU HAVE ANSWERED SOME OF MY QUESTIONS.

I tested positive in December and went off TY after 32 treatments. Was put on another drug and boy did I have horrible relapses. Went to the MS clinic at Vanderbilt who said I could go back on TY in August and will be on it for 6 months-then every other month for 6 months-with MRI every 6 months. I feel really comfortable with my decision

I HAVE BEEN ON TY FOR 28 INFUSIONS. I TESTED + FOR THE JCV ANTIBODIES. I HAVE BEEN THINKING ABOUT STOPING THE TY BUT HAVE READ A LOT ABOUT RELAPSES. BIG CONCERN I HAVE. I KNEW THE RISK GOING IN AND BEING A NURSE OF 30 YRS I DECIDED TO TAKE THE RISK BUT SINCE I AM + I HAVE BEEN QUESTIONING MY DECISION. ONLY BECAUSE MY FAMILY IS SO WORRIED. MORE THAN ME. RECENTLY I HAVE BEEN HAVING SOME PROBLEMS AND THE NEURO HAS ORDERED A MRI WHICH IS ROUTINE IF YOU ARE ON TY AND HAVE PROBLEMS ESPECIALLY AFTER THE 2 YR MARK AND BEING +. UNTIL NOW I REALLY HAVE NOT BEEN OVERLY WORRIED, BUT NOW WITH FAMILY PRESSURING ME TO QUIT AND THIS. I AM REALLY QUESTIONING MYSELF IF I HAVE MADE THE RIGHT DECISION.