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Old 12-21-2011, 01:22 PM #1
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Default Tysabri News..
There have been 12 new cases of PML, according to Biogen.

As of September, 92,200 MS patients are taking Tysabri. As of December 1, there have been 192 cases of PML. Of the patients with PML, 20% have died.

Thank you Agate for the update. We need to know this, so that we can make an informed decision on whether or not to take it.

The odds are still not bad, but any death is horrible.
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Old 12-21-2011, 05:02 PM #2
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Wow...that's a lot of new cases.
I would think that many patients have been on it for a long period of time now, and we will probably see an uptick because of this. It sounds like an excellent drug, but scary to think of what could happen...
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Old 12-22-2011, 08:47 PM #3
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On the good side, in all the cases of PML, of those who had blood samples available from prior to or during their treatment with Tysabri, the blood samples were tested with the new assay and every one of them tested positive for JC antibodies but one. That person had been treated with plasmapheresis (PLEX) and showed no evidence of JC antibodies. It is surmised that the PLEX treatments removed the antibodies. A new sample was tested post PLEX and also tested positive.

Those results bode well for the assay being accepted as a standard for quantifying positive/negative exposure to the JC virus and the risk of PML.

(I hope I said that right!)
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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Tysabri withdrawn from market 02/28/05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
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
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Old 12-22-2011, 10:25 PM #4
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Quote:
Originally Posted by SallyC View Post
There have been 12 new cases of PML, according to Biogen.

As of September, 92,200 MS patients are taking Tysabri. As of December 1, there have been 192 cases of PML. Of the patients with PML, 20% have died.

Thank you Agate for the update. We need to know this, so that we can make an informed decision on whether or not to take it.

The odds are still not bad, but any death is horrible.
Hi Sally,

Correct me if I'm wrong but isn't that 92,000 number the total of all patients who have tried Tysabri at some point? I think the current user stat is just under 70,000.

Harry
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Old 12-23-2011, 11:11 AM #5
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Hi Sally,

Correct me if I'm wrong but isn't that 92,000 number the total of all patients who have tried Tysabri at some point? I think the current user stat is just under 70,000.

Harry
That's right Harry. Not all are still on Tysabri. So the stats are close but not right on.
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Old 12-26-2011, 07:45 PM #6
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Quote:
Originally Posted by SallyC View Post
There have been 12 new cases of PML, according to Biogen.

As of September, 92,200 MS patients are taking Tysabri. As of December 1, there have been 192 cases of PML. Of the patients with PML, 20% have died.

Thank you Agate for the update. We need to know this, so that we can make an informed decision on whether or not to take it.

The odds are still not bad, but any death is horrible.
Sally, do you have a link to where this information is posted? Did you get it from the manufacturer or some other source?

Thanks so much
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Old 12-26-2011, 08:58 PM #7
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Quote:
Originally Posted by SallyC View Post
There have been 12 new cases of PML, according to Biogen.

As of September, 92,200 MS patients are taking Tysabri. As of December 1, there have been 192 cases of PML. Of the patients with PML, 20% have died.

Thank you Agate for the update. We need to know this, so that we can make an informed decision on whether or not to take it.

The odds are still not bad, but any death is horrible.
Thank you for this info.; that is truly horrible. I will be starting Rituxin and there is a chance to get PML with that drug also. My neuro said that no one with MS has gotten PML, but the paperwork still has the PML warning. I had blood taken a week ago in prep for the infusion, and one test is for the JC virus. I will get the results soon.

Do people that take Tysabri have the JC virus blood test before they get the infusion?
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Old 12-26-2011, 09:18 PM #8
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Sally, do you have a link to where this information is posted? Did you get it from the manufacturer or some other source?

Thanks so much

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/1905
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Old 01-07-2012, 05:46 PM #9
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Originally Posted by ms er since '06 View Post
Thank you for this info.; that is truly horrible. I will be starting Rituxin and there is a chance to get PML with that drug also. My neuro said that no one with MS has gotten PML, but the paperwork still has the PML warning. I had blood taken a week ago in prep for the infusion, and one test is for the JC virus. I will get the results soon.

Do people that take Tysabri have the JC virus blood test before they get the infusion?
I keep reading all this and I get more nervous about getting my first Tysabri infussion. Kathy
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Old 01-07-2012, 05:49 PM #10
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Default Infussion Tysabri
Quote:
Originally Posted by SallyC View Post
There have been 12 new cases of PML, according to Biogen.

As of September, 92,200 MS patients are taking Tysabri. As of December 1, there have been 192 cases of PML. Of the patients with PML, 20% have died.

Thank you Agate for the update. We need to know this, so that we can make an informed decision on whether or not to take it.

The odds are still not bad, but any death is horrible.
Hi my name is Kathy and I am having my first infussion this month, not sure I want to do it by reading some of this news. Kathy
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