More MS patients on Tysabri showing positive for JC virus than previously thought

[agate]

I don't recall if anyone here is taking Tysabri, but if anyone is taking it or is thinking about taking it, new findings about the JC virus that is associated with PML might be of interest.

From WebMD, January 28, 2016:

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and from MedPage Today, January 27, 2016:

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However, in the second article there is this information about the authors of the study:

The authors disclosed financial relationships with Biogen, Novartis, Genzyme, Bayer, Sanofi, Teva, Merck Serono, Almirall, Roche, CSL Behring, EMD Serono, Fresenius Medical Care, and Omnia-Med.
Some of them also reported holding a patent for using L-selectin as a predictive marker for PML.

I'm not suggesting that the study has no value because the authors have connections that might be financially beneficial to them. If you read the doctors' comments in the second article, it's clear that these results aren't going to change the ways in which Tysabri is prescribed or taken. There will probably be more frequent monitoring of patients for the JC virus.

[Lazarus]

Hi Agate,
I am taking rituxan and I am JC+. I made the decision to keep taking rituxan because:

1. The JC test comes back with a number and the lower you are on the scale, the less risk you have.

2. The benefit I have had from the rituxan along with the low number on my positive test made me decide.

3. Tysabri probably has a greater risk attached to it...but, ,,,,,,I would ask what my number was.

[agate]

What raises concern is that the risk for the JC virus rises in a patient who is taking Tysabri, with about 9-10% changing from negative for the JC virus to positive during 15 months or 2 years on Tysabri.

They're talking about two different studies here but they got similar results.

So apparently Tysabri modifies the immune system in some way that causes people to be more vulnerable to the JC virus.

[agate]

According to the unofficial tally of Tysabri-related PML cases, there have been 617 PML cases as of 11/30/15. As of June 3, 2015, there were 566. In the 6 months prior to 11/30/15, there was an average of 8.5 PML cases a month.

As of July 9, 2015, that average was 8.33 PML cases a month.

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[Lazarus]

I copied the following about being JC+ from MS World. The post deals with someone considering Tysabri and also Rituxan.:
Linda


"Both are very effective in treating MS. My wife has been on Tysabri continuously since 2002 except during 2005 when it was off-market about a year due to PML concerns. She was JCV+ from the first test.

Literally, there have been hundreds of studies on Tysabri (natalizumab) so a great deal more is known about it than rituximab relative to MS. However, rituximab has been around for many years, also, but it is not as studied in MS.

Rituximab is coming off patent so a new drug was developed very, very similar to rituximab called ocrelizumab. Phase 3 trial results were recently reported and it was found highly effective.

Probably, the reason why your doctor said Tysabri was not a good long-term option is because of PML risk. Depending on several factors PML risk can run between about 1 in 100 to 1 in 3000 after two years on the drug if you are JVC+. There are variables and I am speaking in general terms. If you have taken prior immunosuppressants the risk is higher. Talk to your doctor about it. There are charts which list PML risk.

The Handbook of Clinical Neurology listed the risk of PML with rituximab at 1 in 30,000. Many believe that PML with rituximab is under reported but even if there were 5 cases in 30,000 it would still be far less risk than with Tysabri.

All these issues need to be discussed with you doctor and verified!

I just wanted to let you know our experience and give you a few facts. The QOL we enjoy is because of Tysabri and a total lack of disease progression because of it. Other people may not have the identical experience; some may.

I guess the other thing about Rituximab is that Ocrelizumab will very likely get FDA approval in about a year and transitioning from R to O should be convenient because they are so similar.

All MS drugs have risks but MS disease has notable risk, also. JMHO, but I believe, and firmly so, that the best chance for a life less affected by MS is to opt for an early aggressive treatment before irreversible damage occurs. Both Tysabri and Rituximab are good options in that regard. They are far more effective than the older meds, IMO, and as seen in trials.

Good Luck and congrats on having a really good neurologist willing to consider the two options you mentioned. Pay attention to him, I'm sure you do, you have a good doctor."

[SalpalSally]

Still scary As he!!!!

[SuzE-Q]

Linds, any idea why the risk of PML would be less with rituximab than Tysabri?

Does your doctor have a lot of patients on either?