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Old 12-17-2008, 12:40 PM #761
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Quote:
Originally Posted by Harry Z View Post
You really start to wonder what the long term effects of this drug may be.
Since it's still somewhat new Harry ... we may find out more as time goes on, but it's like that with any drug.

I get my 21st infusion on Friday.
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Old 12-17-2008, 01:45 PM #762
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Since it's still somewhat new Harry ... we may find out more as time goes on, but it's like that with any drug.

I get my 21st infusion on Friday.
Hi Wiz,

You are certainly correct in saying we'll find out more as time goes on...I just wish that I could put more trust in what Biogen tells us about this drug. Their reputation in the world of MS medicine isn't all that good!

Take care.

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Old 12-18-2008, 03:23 PM #763
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Now this is very interesting speculation as to why Tysabri may cause PML in the brain.

http://www.reuters.com/article/healt...4BF5GF20081216
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Old 12-18-2008, 04:09 PM #764
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Here is an even better article on the subject from the researcher's home institution. An article this month in the Archives of Neurology addresses the reduction of brain immunity in people on Tysabri.

http://www8.utsouthwestern.edu/utsw/...es/505840.html
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Old 12-18-2008, 10:01 PM #765
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All, excellent publications, Natalie.. To Spite what Biogen thinks, the MS world knows how important it is, to keep Patients informed.....not frightened but informed.
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Old 12-18-2008, 11:57 PM #766
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All, excellent publications, Natalie.. To Spite what Biogen thinks, the MS world knows how important it is, to keep Patients informed.....not frightened but informed.
Now I ask the question....do you not think that Biogen's researchers were aware of this possible problem from the beginning? They knew what Tysabri's mechanism of action was and surely must have known of this possible danger. I believe that Dr. Lawrence Steinman, one of Tysabari's co-inventors, made several references to the long term use of the drug and this very type of danger. Biogen had an answer for him a few years ago...told him to stop "bad mouthing" the drug!

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Old 12-19-2008, 12:30 AM #767
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Harry,

So, do we not offer drugs that have a chance of bad side effects? Don't we have to look at the overall effect? Let the patients know of any possible adverse affects and let them decide for themselves? Would you rather we not have Tysabri available as a treatment?

For myself, it has given me back a lot of my quality of life. All of these heavy duty drugs have their chances of dangerous side effects. If I take too much aspirin I might bleed to death.

So what do we do Harry? Take the Tysabri away? (And you know I'm not baiting you, I respect you as the caring spouse of someone with MS, your dear late wife.) Just trying to let you see the side of the patient that relies on Tysabri.
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Old 12-19-2008, 12:32 AM #768
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Yes, Harry, Biogen stinks.., but the truth is that, Ty is helping a whole lot of people to hold back the progression of MS.

The question has always been and will always be, do we want to take the chance with Tysabri and other dangerous drugs to slow the progression of MS? Some Docs and their Patients say no and some say yes.

I only ask that they keep us informed, so that our decisions are based on truth and not hype.

How are you doing, Harry..
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Last edited by SallyC; 12-19-2008 at 11:18 AM.
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Old 12-19-2008, 06:46 AM #769
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I agree with Wiz and Sally.....provide the patient with all the information (good and bad) and let them make the decision as to whether or not they want to use that particular therapy.

Everyone's chemical makeup is different....what may cause a bad reaction in me may not cause it in someone else. It's a calculated risk we all take with everything we put into our bodies. Even things as relatively safe as aspirin and Tylenol.
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Old 12-19-2008, 10:14 AM #770
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Biogen-Idec reported yesterday that the US patient who was reported to have PML on Oct. 29, 2008 has died.

The death was likely as a result of IRIS from PLEX and treatment for PML. This is the patient who was 49 yrs old, female, previously treated with Copaxone,Beta-interferons and methotrexate for RA. She had received 14 infusions of Tysabri.

Her last methotrexate treatment was 4 months before starting Tysabri. It is unknown when she was last treated with interferons and Copaxone.

More information as and if it becomes available. Since this patient lives in the USA, there may be no further information available due to the HIPAA laws.
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