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Old 07-01-2009, 11:32 AM
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
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Quote:
Originally Posted by Riverwild View Post
I don't know if he ever got back on Tysabri, Cherie. I've heard as much as everyone else has from Vic, that he is busy with his wife's recovery and that's about it. I am sure when he can update us he will.
Thanks for the reply ... guess I'll wait till he comes back to this thread, if that's what he is on.

Quote:
Originally Posted by Riverwild View Post
I think that not enough is known to make a stand on what actually causes the JC virus to activate and cross the BBB. 80-85% of the population of the world carries the JC virus in their kidneys and it is usually dormant. PML has been seen in people with AIDS who are on immune suppressing drugs, in people who are treated with Rituxan, Tysabri, Raptiva, Cellcept, Methotrexate, Mitoxantrone, chemotherapeutic drugs, corticosteroids and some transplant drugs.

Because of the PML cases associated with Tysabri, more has been learned about PML than ever before. It was previously known as a fatal disease. Now, with plasma exchange along with treatment with mefloquine or mirtazepine, and steroids if IRIS develops, people are living after diagnosis of PML.

Reports on patients diagnosed with PML after Tysabri shows that most of the patients diagnosed so far are still alive. Some are doing well. Some of the earlier people are very disabled. The key seems to be increased vigilance and reporting ANY symptoms to your doctor. Since not many people are relapsing on Tysabri, when signs of relapse are seen, the new norm is to suspect PML first and vigorously test for it with blood tests, spinal taps, MRI, discontinuing Tysabri and further treatment if necessary. It COULD be just a relapse, but no one takes that chance now.

Sorry to be so long-winded but you did ask...
Great summary, RW.

Cherie
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"Thanks for this!" says:
ewizabeth (07-01-2009), Riverwild (07-01-2009)