Testing for JCV

[NickyOz]

I live in Ireland and am being tested for JCV before deciding whether to go on Ty or not. How come so many people don't get tested till after they start their infusions. Also what is the point in going on something that becomes more dangerous for getting PMLyje longer you are on it. Does thay mean it is only a short term med

[MsKitty]

Hi Nicky,

I have had 47 infusions of Tysabri so far. I don't think it was common practice to test for JCV, because I don't think they were sure what the exact problems were. I was only tested within the last few months and lucky for me it was negative.

Tysabri has only been out for several years, so, I think they are unsure of long term effectiveness.

The results I've had with Tysabri have been so positive for me that I am willing to take the risks, it has given me back a quality of life that I wouldn't of had without it.

Lisa =^..^=

[hackwriter]

Nicky,

Your first JCV test is to establish a baseline. Our risk for contracting PML rises after taking Ty for 18 months--but then the risk lowers after a bit more time.

You will have the JCV test periodically while on Ty. Initially you might test negative, but that could change two years out. Some people on Ty test positive and still opt to continue the drug because it is helping them, and therefore they are willing to take the risk. Having a positive JCV test doesn't mean you will contract PML.

The only way to know whether you wish to continue the drug is to take it and then periodically reevaluate its effectiveness and tolerability--as well as to reexamine your feelings about the risks and benefits.

Kim

[lindaincolorado]

Hi Nicky, I just came back from having my 56th infusion. I am jcv positive. My ms (very) specialist agrees with me to continue a med that has worked great for me.

Up to 2 years of infusions pml is almost unheard of. Between 2-3 yrs is when it is most prevalent but, still rare. If I remember correctly my neuro told me that between 3-4 yrs the odds of pml are 1/787 and that after 4 yrs appears to go back to 1/1000. Tysabri has worked so well for me that I was/still am willing to stay on it !!

Good luck