Question about being JCV positive

[Eva]

Hi Guys

I had a recent blood test and found out I as JCV positive. I've been taking Avonex for a few years and will now be changing to Plegridy for convenience.
Does being jcv positive mean that my drug options in the future are limited due to the PML risk?
I've been well, I work, exercise & have no symptms. I'm just thinking of the worst case scenario. I'm wondering if it will rule out Gilenya and tecfidera?

Would be interested in knowing your experiences.

[ru4cats]

jcreagan posted a good response to this question in the Tecfidera forum. I recommend you reading it.

[jreagan70]

Hi Eva:

Every drug that has immunosuppressive qualities carries a risk of opportunistic infections, including PML. Anyone who carries the JC virus is at risk of developing PML if they become immunosuppressed for any reason. The risk for PML is relative because it includes several factors.

The JCV STRATIFY antibody test and the index being used currently apply only to Tysabri. There haven't been enough cases of PML coincident with other MS drugs for an index or risk level based on the STRATIFY test to be developed. And, while there have been thousands of cases of PML over the years caused by other immunosuppressants, no test or risk index like STRATIFY for Tysabri was ever developed for them.

The important point is that the STRATIFY test developed for Tysabri can't be used to calculate the risk of PML for any other drug.

With the risk being relative, the Food and Drug Administration in the US has ruled that some drugs, but not others, carry a black box warning (which is the highest form of risk warning), for PML in the prescribing information. (Black box warnings exist for other conditions.) The black box is the first thing that appears in the prescribing information, ahead of all of the individual sections.

In the US, Tysabri has a black box warning for PML. Gilenya and Tecfidera don't. The PML warning appears in the Warnings and Precautions section, but the risk hasn't risen to the level of the black box. That's a relatively good thing, because it indicates that the risk of PML appears to be relatively low for those drugs.

Lemtrada doesn't have a black box warning for PML, and PML doesn't appear in the Warnings section. The black box for Campath (alemtuzumab for a different use) doesn't specifically include PML in the generic warning about infection.

It remains to be seen whether ocrelizumab will have to have a black box warning for PML when it's approved by the FDA -- its predecessor, Rituxan, does have a black box warning for PML.

So for other MS drugs, until PML starts occurring in people who would otherwise appear to be relatively low risk (normal white cell count, etc.), the possibility of it occurring should be kept in perspective and drug choices made accordingly. Right now, you're more likely to die in an auto accident or by slipping in the bathtub.

[ru4cats]

Oops! Just checked, and it's the Gilenya forum. Sorry for the misdirection. The thread is titled

"Just found out I'm JC+"

Glad I checked.

[ru4cats]

Thanks jcreagan. I knew you'd have the answers. You've taught me not to go above my wheelhouse!

[Eva]

Thanks everyone for the replies