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Tysabri #38-THREE YEARS

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Old 09-24-2009, 10:33 AM #11
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Also, want to mention that on another site there was a post saying she and hubby (he has ms) went to a Biogen meeting and Dr. said NOT to get H1N1 shot if on Tysabri for fear of Guillian Barre (sp). I will call Active Source tomorrow-I'm wondering what's different then reg flu shot, which I have gotten yearly for many, many years.
Did you get an answer on this from Active Source, Grammie?

Cherie
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Old 09-24-2009, 12:46 PM #12
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Linda, that is wonderful news!

I'm glad I read your post today, because tomorrow (Fri) I will have my 1st Tysabri infusion. I have high hopes for this drug, and feel very positive about receiving it.
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Old 09-24-2009, 01:06 PM #13
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Linda, that is wonderful news!

I'm glad I read your post today, because tomorrow (Fri) I will have my 1st Tysabri infusion. I have high hopes for this drug, and feel very positive about receiving it.
I hope you do at least as well as I have and have a wonderful Tysabri journey
Linda
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Old 09-24-2009, 01:09 PM #14
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Did you get an answer on this from Active Source, Grammie?

Cherie
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Old 09-24-2009, 01:14 PM #15
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Originally Posted by Grammie 2 3 View Post
Also, want to mention that on another site there was a post saying she and hubby (he has ms) went to a Biogen meeting and Dr. said NOT to get H1N1 shot if on Tysabri for fear of Guillian Barre (sp). I will call Active Source tomorrow-I'm wondering what's different then reg flu shot, which I have gotten yearly for many, many years.
Did you get an answer on this from Active Source, Grammie?

Cherie
Please don't shoot the messenger.... this was posted September 22.....Harry

NEW YORK — The Food and Drug Administration says it confirmed three new cases of a potentially lethal brain inflammation linked to the multiple sclerosis drug Tysabri.

There have been 13 reported cases of progressive multifocal leukoencephalopathy, or PML, since mid-2006. The reports are the first confirmed new cases since June. While the disease is rare, the FDA says the risk appears to increase as patients remain on Tysabri.

Tysabri is marketed by Biogen Idec Inc. and Elan Corp. PLC, for multiple sclerosis and Crohn's disease. All the PML cases are linked to its use in multiple sclerosis.

The drug was approved in November 2004 and pulled from the market the next year due to PML reports. It was reintroduced in July 2006, and Biogen said it is used by 43,000 patients.
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Old 09-24-2009, 02:37 PM #16
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Please don't shoot the messenger.... this was posted September 22.....Harry

NEW YORK — The Food and Drug Administration says it confirmed three new cases of a potentially lethal brain inflammation linked to the multiple sclerosis drug Tysabri.

There have been 13 reported cases of progressive multifocal leukoencephalopathy, or PML, since mid-2006. The reports are the first confirmed new cases since June. While the disease is rare, the FDA says the risk appears to increase as patients remain on Tysabri.

Tysabri is marketed by Biogen Idec Inc. and Elan Corp. PLC, for multiple sclerosis and Crohn's disease. All the PML cases are linked to its use in multiple sclerosis.

The drug was approved in November 2004 and pulled from the market the next year due to PML reports. It was reintroduced in July 2006, and Biogen said it is used by 43,000 patients.
Harry, I think the numbers are getting kinda confusing.

When Biogen quit announcing the numbers, there were 11 cases that we knew about already, plus the 3 from the trials (for a total of 14) ... but that included one case from July/09.

http://pietynorwit.com/Tytable.htm

These articles say there are 3 new cases since JUNE, so that must exclude the one we already knew about from July. That would mean 11 - 1 = 10, then the cases from July - Sept 8 = 10 + 3 (new ones) = 13 (+ the 3 from the trials) = 16 all up now.



Cherie
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Old 09-24-2009, 06:26 PM #17
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Harry, I think the numbers are getting kinda confusing.
Hi Cherie,

Yes they are but it appears that the longer one is on Tysabri, the higher the risk for PML. What is happening is what some of the experts stated from the beginning would likely occur. Let's just hope that the numbers don't become much worse!

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Old 09-25-2009, 01:35 PM #18
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Hi Cherie,

Let's just hope that the numbers don't become much worse!

Harry
Actually, let's hope that they are learning something about the risk factors for PML (other than just time) and that they'll be able to screen patients at risk for PML (prior to actually getting it) and that the numbers become much better.
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Old 09-27-2009, 01:07 PM #19
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Congrats On Your Big THIRD YEAR ANNIVERSARY! So happy to hear tysabri is working out well for you!!!!!
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Old 10-01-2009, 12:25 AM #20
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Hi Linda! Somehow I missed this before. CONGRATS on your 3 year success! Whoohoo!!
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