PML =Progressive multifocal leukoencephalopathy


PLM = PatientsLikeMe (.com)

Well….. here I start to rip on the Biogen/Idec Corp. for the standard corporate company “Sho…. Sho-ing” the whole: 24 diagnosed PML  cases with regards to Tysabri.    (the company not allowing the negative results to be made public via their website).

I digress.

My fellow Tysabri comrade, “syl”…. has been a PLM member for about as long as me…. 3+ years.  Her info is always credible and she has helped many people at PLM w/ her verbal contributions.


“syl” writes:

Thought everyone might be interested in this info:

Makers of Tysabri, Raptiva Join Forces to Research Rare Brain Infections

Three drug makers are forming a consortium solely dedicated to researching cases of a rare but potentially deadly brain infection linked to users of their immunosuppressive medications.

The companies are going to focus on studying progressive multifocal leukoencephalopathy (PML), a condition which is increasingly found in patients taking Biogen and Elan’s multiple sclerosis and Crohn’s disease treatment Tysabri, the arthritis disease drug Rituxan by Biogen and Roche, and Raptiva, the psoriasis medication made by Roche unit Genentech.

PML is most often found in people taking Tysabri. There have been 24 cases of the infection in users of the drug, which was pulled from the market in 2006 soon after its launch because of reports of PML in users. The drug was later allowed back in circulation with a stronger warning label added.

The infection is triggered by the JC virus, which most people carry without ever suffering any adverse effects. In some people, however, the virus attacks the central nervous system, leading to decreases in neurologic function and death.

By lowering the body’s immune system to treat multiple sclerosis and prevent flare ups of arthritis and psoriasis, Tysabri, Raptiva and Rituxan leave patients far more vulnerable to PML and other types of opportunistic infections.

PML Research Consortium Planned

The companies’ plan to jointly research PML cases in patients taking their drugs was announced this week at a covering various aspects of the infection at the New York Academy of Sciences Tuesday, according to a report in The Wall Street Journal.

As part of the consortium, a global database of reported PML cases will be established to help predict, prevent, and treat the infections, officials said. There is concern that the number of PML cases worldwide is under reported due to physicians not linking it to use of the immunosuppressive drugs.…



Some may still think that Biogen/Idec can hide behind this new “committy” the have established.

I say: “At least they are doing something”

Let’s see where this study ends up and just how fast we can see results/answers.

Be Well