Multiple Sclerosis Community

The first med my doctor mentioned was Tysabri. I had already read about it & PML. I told her know way. She kept mentioning at every visit. She then had me take a blood test for something else and snuck in the JC Virus test. It was positive. She no longer mentions Tysabri to me. It was a "I told you so" moment. If your test was positive and your still on Tysabri I would discontinue the medicine. MS is better than PML.

Tysabri was my first med as well. After two doses, it was pulled from the market for PML deaths. I then went on copaxone until it started causing me to have recurrent respiratory infections. At that time Tysabri had been re-relased, so I started on it. After 4 months the JC Virus test was released and I tested positive. I immediately stopped Tysabri. To me, a relapse is far better than death. I am now on Betaseron.

Hey guys, lovesweinerdogs here. Can someone explain JC Virus and PML to me? I'm not familiar with this, or I've forgotten it.

Thanks! Dawn

Dawn,

The JC virus is responsible for PML, which is an often fatal brain infection with no cure. Cases of PML occur at a rate of about 1 in 1000 patients who are taking Tysabri for either MS or Crohn's disease.

There is a blood test for the JC virus available. A positive result doesn't necessarily mean you will develop PML--and a negative result doesn't mean you wouldn't test positive at a later date--but that result is one factor used by the patient and doctor to decide whether to continue on Tysabri.

Kim

In other words Dawn, taking Tysabri is just one big crap shoot!

Dave

Wow.. Sounds like it Swampster1952

I have been on Tysabri for 3 years and just tested positvie for JC virus also. My MRI was clean and am going to stop my Tysabri treatment also. I have had MS for over 20 years now and have been doing better just getting more and more tired. I do not feel as if I want to play Russian roulette so to speak by continuing Tysabri waiting for a positive MRI scan before stopping so I am stopping now while I only have the virus. My husband feels I should continue treatment but I do not want to take the chance with my future. Good luck with your continued treatment. I have been on almost all of the treatments so far and have had success with all except Copaxone. Good luck to you and continued success.

I was told by my dr. that once you test positive for the JC virus you odds change to 1 in 500 a risk I am not willing to take so am stopping my Tysabri and will evaluate wha to go on now.

I went on Tysabri shortly after it was reinstated and it worked great for me. My physician regularly tested me for JC. In May 2011 I finally tested positve. His advice was to stay off until it cleared my kidneys and then retest. If it clears and I test negative, he wants to put me back on. I hope I can, and soon.

Lots of the people here say that MS is better than PML, and certainly if you look at it very generally and in the short-run, of course it looks that way....but here is another way: Since we are all going to die anyway, which way would you rather do it, fast and terrible or slow and terrible? I have spent enough time in my doctor's waiting room to know that fast is better.

YES. I HAVE BEEEN ON TYSABRI FOR 3 YEARS AND DOIN GGREAT. TYSABRI HAS BEEN A LIFE SAVER. JUST TESTED POSITIVE FOR THE JC VIRUS AND MY DR WANTS ME OFF TYSABRI HAVE NOT MADE A DECISION YYET?

I was part of the first Tysabri trial, and as it turned out, I was in the placebo group, which was a great relief at the time. The trial was stopped soon after it started because the PI at UCSF became aware of the PML that had occurred within first trial.

I personally would not go near Tysabri because of PML, even though it has a much higher efficacy than the other drugs. I'm on Copaxone, even knowing that its effectiveness is limited.

I'm personally interested in Functional Medicine approaches to MS, such as Dr. Terry Wahls spoke about in a recent TED Talk. See:
http://www.thewahlsfoundation.com/dr-wahls-gives-tedx-talk-on-overcoming-multiple-sclerosis/

In addition, Dr. Ellen Mowry at UCSF recently published research (Annals of Neurology 2012) that shows that higher SAFE dosages of Vitamin D reduce the activity of MS in the brain. The study focused on variations in blood serum levels of Vitamin D at the lower safe range and did not study blood serum levels at a high safe range.

I believe that studying higher levels is the next step. Dr. Von Wee Yong from U of Calgary gave a presentation at UCSF in Oct. 2009 in which he said something very close to the following: "In the right dosages, Vitamin D is more potent against MS than any of the currently available drugs."

Dr. Yong's research involved serum levels of Vitamin D in the higher safe range, but it involved in vitro lab research and did not include the necessities of a Phase 1 safety trial or a control group.

There are no rich drug companies pushing and funding research in Vitamin D, so Dr. Yong's insights may never reach the market.

Vitamin D can be toxic, so raising your blood serum levels must be done in consultation with your doctor. Make sure that your doctor approves of the dosage you take, and that you receive regular blood tests to determine your actual serum levels of Vitamin D.

However, I do not understand why neurologists would risk PML when Vitamin D toxicity is rare, reversible, usually non-fatal, and preventable with regular blood tests.