JC Virus

[rsinger]

Anyone know what medications are contraindicated if you are positive for the JC Virus? Pretty sure Tysabri is not allowed if you test positive.

[Goldfinch]

Tysabri Contraindicated

Not necessarily. I was on Tysabri for six years. I tested positive for JC virus a year ago but my doc kept me on Tysabri till my last infusion four days ago.

It's more complicated than jc + no Tysabri, at least for existing Ty patients. They test your JC levels and weigh that with the time you've been on Tysabri to determine the risk. When they started trying to predict risk levels at the beginning of the emergence of the PML issue, it was considered that one's risk was 1:1000. The longer one was on Tysabri, the more elevated the risk.

As things stand for me now, the risk is 1:118, so my neuro and I had the talk. He feels I am a good candidate for Gilenya, so I will be receiving steroids instead of my usual Tysabri for two months, then initiating Gilenya if pre-testing does not eliminate me from consideration for its use.

[22cyclist]

I would add that when taking Tysabri, the JC virus is tested every 6 months and and is when positive also comes with an index of how positive you are. The more positive the index is, the more likely you are to develop PML with Ty. The lower the index is, the less likely you are to develop PML. This may be what the last OP was talking about without saying index.

Otherwise there are no other medications at this time that it matters if you are JCV positive.

Good luck
Lisa
Moderation Team

[MSer102]

Otherwise there are no other medications at this time that it matters if you are JCV positive.

No that's not true! There are several medications that carry PML warnings. It's just that none of them are currently used routinely for treating MS.

Two medicines that have black box warnings about PML that are being used sometimes to treat MS are Cellcept and Rituxan. And people treated with Cytoxan have developed PML. It's just that there haven't been any reports of people taking these medicines for MS developing PML.

Any immunosuppressant medication can cause PML. It's the medication and the immunosuppression that cause PML in JCV+ people, not the disease that's being treated.

[Marco]

I have tried to respond to you about 10 times and my brain is not cooperating. Please forgive me if/when I goof if up.
Being JCV+ means your PML risks are increased. Prior immunosupressant and immunomodulator use also increases your risk. For purposes of MS treatment, Tysabri is the primary treatment associated with PML. Rituxan, Novantrone, Gilenya, Tecfidera, Azathioprine, Methotrexate, cyclophosphamide are also implicated with additional or potential PML risks. Lemtrada also needs to be added to the list, but is not currently available in the US. Sorry, if i missed a drug ... chances are the ones you are considering are listed.

Even with JCV+ most neurologists will still prescribe Tysabri provided your MS has not successfully been controlled by another therapy. This means Tysabri is typically not used as a first line treatment. The only first-line treatments in the above list are Gilenya and Tecfidera. You also need to be aware that the longer you are on Tysabri, or other listed medication, the chances of you developing PML is increased.

For Tysabri, the 2-year mark is where most researchers believe is a tipping point where a difficult decision is to be made. If you visit the MSWorld Tysabri forum you will notice a large number of people are well passed the 2-year mark. Several of them are routinely harassed by their neurologist to change treatments, but the Tysabri folks are quite loyal.

Just remember as long as your immune system remains strong your chance of developing PML remains low. It is when your immune system is weakened to the point it cannot control JCV (keep it in check) that it can reactivate and cause the development of PML. That is why AIDS/HIV, organ transplant and people with serious blood problems are at the highest risk of developing PML.

Fortunately, you are aware that you are at an increased risk so you need to filter all future medication and treatment options through this filter. If a doctor suggests a new medication you can simply ask, "Does this carry any increased PML risks because I am JCV+? If you go with a medication that increases your risk understand what is required to monitor your body. How often do you need blood work? What indicators are important? What signs or symptoms do I need to be aware of and what do I do if I see them?

I hope someone in the community will correct me if i messed something up. I wish you well with your decisions and hope you'll keep us in the loop with your decision.

[rsinger]

jc virus

Thanks for your very detailed reply Marco. I guess the bottom line is that we all have to stay on top of the disease and the treatment plan. Always wise to ask our docs questions. This is a serious disease with serious medications. Not to be taken lightly. Thanks again.