3 years on Tysabri...

[EMKEI]

Hello everyone,
I've been on Tysabri for 3 years.
4 months ago I was JC virus negative.
Should I stay on Tysabri or change to Tecfidera for example?
Can I be JC virus negative and still get PML? or it's only when I'll become JC positive.
Please help.
Millie

[jreagan70]

Can I be JC virus negative and still get PML? or it's only when I'll become JC positive.

Hi Millie:

In many kinds of test results, there can be false negatives. So when someone says they're JCV negative, the only thing that can be said with certainty is that they tested negative, not that they absolutely are negative. It's possible to test negative for JC virus antibodies and still have the JC virus. There isn't any way to tell a false negative from a true negative with one test.

Because of false negatives, it is possible to get PML even though the test result was negative.

PML is an out-of-control infection with the JC virus. By definition and classification, nothing else can cause PML. A person must have the JC virus to develop PML; it's impossible to develop PML without it. A really unfortunate way for a person to find out that they have the JC virus even though they tested negative is for them to develop PML.

[lindaincolorado]

Hi Millie, find out what your jcv #s are.
.20 is neg and .40 is pos. I am between .23 and .27 which is intermediate... even tho some drs consider these #s pos.
I wonder if anyone who tested neg got pml ???

[Myoak]

Hi Millie,

Yes, it is possible that someone who tested JCV- could get PML. There have been a few cases but I doubt if more than half a dozen in all of history could be found so it is extremely unlikely, IMO.

What makes it even more unlikely is the fact that people get tested multiple times. A fluke test may miss JCV once but it seems improbable that repeated testing would miss JCV antibodies every time, IMO. And remember too, just because someone has JCV doesn't mean they will get PML. NOT AT ALL. Most of the world is JCV+ and PML is quite rare. Even among tysabri users there has been about 600 cases out of over 140,000. And ways to mitigate PML risk are showing benefit. As are new treatment protocols for PML.

Linda, I think you meant to say "indeterminate" about titers between .20 and .40, and you are correct, that range being a gray area between negative and positive. And as you know, below .9 does not have much more estimated risk than being negative. Best to you!

Millie, I believe there have been 3 cases of PML with tecfidera. The point is that there is risk with every medicine. I believe your doctor will be able to answer your questions and address your concerns. Don't allow fear to disrupt good treatment decisions. If statistics matter, PML is not a realistic concern taking tysabri while being JCV-, IMO. Be sure to ask your doctor so your mind will be at peace, won't you?

[lindaincolorado]

Thank you Myoak

[EMKEI]

Report numbers

Hi Millie, find out what your jcv #s are.
.20 is neg and .40 is pos. I am between .23 and .27 which is intermediate... even tho some drs consider these #s pos.
I wonder if anyone who tested neg got pml ???

Hi...I don't know where you're getting your numbers from?
My Labcorp report only says "No JCV DNA detected - Negative"
I don't see any numbers on the report.
Millie