Yeah, I am JCV+.
My titer level is right in the danger zone: 3.2 or 3.6.
Egads, that’s bad! I certainly don’t want PML!
But I certainly don’t want to waste away from MS. The tysabri treatment is what stops my MS progression, HARD!
That’s my dilemma: to treat with risk, or find another likely-less-effective and hopefully less risky alternative treatment, or stop treatment altogether. (though I’d like to think I’m not a moron).
I like the Tysabri, it’s way better than getting stuck in the leg every week with those arcane ABCs (in my case it was Avonex). Works like a champ, and doesn’t leave me with side effects, it’s the perfect MS drug thus far that I’ve found. If it ain’t broke, don’t fix it right?
From the linked video:
Natalizumab (Tysabri) is especially risky. “We know that the risk with natalizumab is incredibly high in the context of JC [John Cunningham] virus antibody positivity and prolonged therapy,” Dr. Berger said in an interview after his presentation.
Still, “you can safely give natalizumab for a short period of time when treating patients with aggressive MS,” he said. “I will frequently employ that strategy even in the context of JC virus antibody positivity.”
I’ve been on Tysabri since 2009. Almost 10 years . I think that’s a bit longer than a short period.
It’s like living with an invisible gun stuck against your head. Never knowing IF or WHEN it will go off!