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Old 03-27-2009, 10:30 AM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by dmplaura View Post
It's very positive to hear of those who developed PML and received treatment lived.

I'm just wondering what type of permanent damage results from PML?

If a patient on Tysabri does develop PML, can they resume Tysabri treatment following treating the PML? Or is development of PML basically the end of the road as far as Tysabri for that individual?
Good question Laura!

I would think it would depend on a number of circumstances.

What other treatment was the patient on before Tysabri and is it thought that the treatment prior to Tysabri contributed to the development of PML?

What damage did the PML cause and did the patient recover from that damage?

Is the patient healthy and capable of making his/her own decision?

Is there any reason that this patient should NOT be on Tysabri, after reviewing all the evidence at hand? Does having the JC virus and resulting PML mean that it will happen again since it happened already once? I think THAT will be what would preclude Tysabri from being continued!

Unfortunately, we don't hear much about what happens to patients who develop PML except for their treatment for the PML at this point.

The husband of the last patient diagnosed with PML is blogging about what is happening with her. The translation of it is a little spotty when you use a translator service like Google, but the information is clear enough to be understood.

What the drug companies fail to understand is that we are not ostriches, even if they treat us as if we should be. We are actively seeking information and sharing it, correcting information that gets skewed in transmission, and following up when they only give us the sketchiest of details, and your question is a VERY good one and one that I don't think has been asked yet!

I'll see what I can find out as far as the info available on this but I bet it's NOT something they are discussing at this point.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
dmplaura (03-27-2009), komokazi (03-27-2009)