NeuroTalk Support Groups - Did my Dr. tell be the truth about Tysabri

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- - Did my Dr. tell be the truth about Tysabri (https://www.neurotalk.org/multiple-sclerosis/39760-dr-tell-truth-tysabri.html)

Here is my post and the article that Sheena is talking about.

http://neurotalk.psychcentral.com/post50100-85.html

Quote:

Originally Posted by sheena (Post 223059)

River - what I saw was a comment here by Sally C. on 12-15-06
"According to the WSJ article, by staff reporter Sylvia Pagan Westphal:
The analyst's report describes seven non-PML deaths in patients taking Tysabri that "appear to be related to immunosuppression." One death was owing to pneumocystis pneumonia, an infection that only patients with severely debilitated immune systems get; another was because of herpes encephalitis, a rare infection of the central nervous system. Four other deaths were possibly caused by sepsis, an uncontrolled infection that spreads through the body. The report mentioned that the FDA database contained "numerous" accounts of serious, nonfatal infections that "suggest again that the toll from Tysabri extends beyond PML." I have too few posts to link but ...
drug-injury.com/druginjurycom/2005/09/analyst_report_.html

I'm by far an expert but to me this looks like 7. If correct or not I'm am still going TY. What does concern me is "The report mentioned that the FDA database contained "numerous" accounts of serious, nonfatal infections that "suggest again that the toll from Tysabri extends beyond PML."

Thanks Sally, new here and can't link yet and did now how to quote. :hug: ~Sheena~

Quote:

Originally Posted by sheena (Post 223544)

Thanks Sally, new here and can't link yet and did now how to quote. :hug: ~Sheena~

Your welcome. I'm surprised you found it..:eek::D

Thanks RiverWild for that post, and Cherie for the information as well.

As for the deaths attributed to Tysabri, they are reported only b/c they are on Tysabri. They are not attributing these deaths TO Tysabri. Any adverse events that occur while a patient is on any drug is reported. I am sure that if you were able to cross reference these patients with other medications they are taking, you would see them listed as deaths under those drugs as well.

They cannot prove that Tysabri caused their deaths.

I have worked with the FDA on more than one occasion to provide accurate information with regard to Tysabri as well as testifying to get the drug back on the market. Accurate information is what needs to be put out publicly for the patient. One of my interviews with a reporter was not accurately reported in a medical journal and I was furious. I called her and told that if she was going to quote me from another newspaper then she should quote me accurately or pull the article. She took literary license and by the time my quote was put in her medical journal I was not a patient with MS testifying, I was a stock holder from Elan...you can imagine I was hopping mad...it got changed! That slant made a world of difference on the information presented at the time.

As Riverwild pointed out, it's your choice. And not all drugs work the same way for everyone. Unfortunately Tysabri was not the drug for me, but I believe in choices.

Educated choices.

Good luck with your decision.