JC Virus...treatment?

[kymrob91457]

Hi. A while back someone posted something about their Dr. treating them for the JC Virus. If you know something about this, please let me know. I was told there is no treatment for this virus. Just wondering what the treatment is? Thank you!

[Iona60]

I read about someone that had developed PML on tysabri getting better on ocrevus. Jcv causes PML, which is usually deadly. That's the only thing that I'm aware of.

Not sure if there was anything in the big post on jcv a few days ago by. Ms-Indestructible

Julie-MS

[Fancy1959]

Kymrob91457, it's Fancy1959. The JC virus in and of itself is a very benign virus that normally causes absolutely no side effects. A large portion of the population are silent carriers of this virus but there's no harmful effects that I'm aware of from the virus. The only thing I am aware of is it normally comes from felines waste products like from their litter boxes. Pregnant women that are not yet carriers of the JC virus are warned to stay away from changing or messing with their cat's litter box.

The problem arises when the JC virus is mixed with certain medications like Tysabri or Tecfidera. There might be additional medications that do not respond or interact well with the virus but these are the two that I am aware of. For more information talk to your neurologist. If your JC virus count goes up you are setting yourself up for the PML infection. This is an extremely serious and life-threatening infection of the brain. The only thing that can prevent death as I understand it is to identify the PML infection quickly and attack it with enormous antibiotics. Once again we are not doctors on this site so do not take what I tell you as gospel. Check with your neurologist for information that is completely accurate. Fancy.

[kymrob91457 in reply to Fancy1959]

Thanks for responding to my post. I was on Tysabri for 6 years, and tested negative for the JC virus. I just thought 6 years of tempting fate was long enough, so I stopped taking it. Fast forward...I went on Tecfadera, and learned I was JCV positive. I didn't stay on on that either. I tried Aubagio, and my hair fell out in clumps. I stopped taking that too. Somewhere in there I also went on Gelenya. But there was a few cases of PML, so I stopped taking anything for about 6 months. I had my 2nd half infusion of Ocrevus the end of July. I have never had or been around any cats, so, I don't understand why all of a sudden I tested positive. My count is very low, and so far there has been no cases of PML with Ocrevus. I also heard that if you get PML, they give you a blood transfusion. I have SPMS, but my Dr. lets me try anything that may slow the progression. Thanks again! Kym

[Lilith08 in reply to Fancy1959]

I haven’t seen any connection to cat litter. Isn’t that toxoplasmosis?

JCV is in at least 50% of the population, so it has to be something other than exposure to cats.

[kymrob91457 in reply to Lilith08]

Yup, I totally agree. It's a virus. My Nuro told me you could just pick it up, and where, anytime.

[greaterexp in reply to Lilith08]

I’ve read that the mode of transmission is unknown, but body fluids may be one way it’s transmitted. I’ve never heard of cars transmitting the virus, myself.

[erash in reply to Fancy1959]

Fancy1959 i read Jc virus is from sewage. You may be thinking of another virus, toxoplasmosis, found in cat litter boxes etc. I could be wrong.

But you are correct, many of us have been exposed and carry the JC virus and it's usually not a problem until your immune system is compromised (some DMTs, AIDS etc.)

[Lilith08]

Unfortunately, there does not appear to be any treatment for the JC virus. It only becomes a problem in people with very suppressed immune systems, which is what happens when you take certain MS drugs.

I thought this article explains the problem nicely.

healthline.com/health/multi...

[ICUFrannie4424]

JC virus is very bad. Serious stuff. Could be deadly. Google it and see.

[Diva1976]

As stated above,no treatment for this. Neurologist usually check to monitor what MS med maybe safe for you if positive. At least that was how my neurologist approached it once I tested positive.

[kycmary]

I have never heard of a treatment for PML just that mostly people who get it die or are extremely disabled.

[jackiesj]

There are also other medications such as Bentyl(didn't know until told) IBS med that can effect the virus.Ask doc, than keep asking until you get an answer...it scared me so bad...but one day at a time