Comments on: Tysabri and the 2 New Reported Cases of PML http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/ PatientsLikeMe - Patients helping patients live better every day Wed, 07 Jan 2009 02:07:45 +0000 http://wordpress.org/?v=2.7 hourly 1 By: pam http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/comment-page-1/#comment-4376 pam Thu, 21 Aug 2008 02:51:57 +0000 http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/#comment-4376 Last year I had two treatments of Tysabri, that was enough for me. Only because the side effects I could not handle. Which were headaches and alot of pain in my legs. I have to admit that PML did scare me, but my doctor did want me to try Tysabri, but again I could not handle the side effects. Last year I had two treatments of Tysabri, that was enough for me. Only because the side effects I could not handle.
Which were headaches and alot of pain in my legs. I have to admit that PML did scare me, but my doctor did want me to try Tysabri, but again I could not handle the side effects.

]]> By: Craig http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/comment-page-1/#comment-4185 Craig Sat, 09 Aug 2008 03:39:28 +0000 http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/#comment-4185 Nice site... So far, only 2 cases of PML have been recorded among Tysabri recipients since the FDA allowed it back on the market...oddly both out of Europe and both announced at the same time. The FDA apparently considers 1 case per 1,000 recipients to be within acceptable risk/reward ratios. Currently, approx 32,000 recip. are receiving Tysabri, with only 2 reported PML cases...that is pretty astounding and demonstrates, at least for now, a much lower incidence than is apparently acceptable. My understanding is that through vigilent screening, PML can usually be caught early and treated successfully; I am unclear re. once PML is treated whether that person can safely go back on Tysabri treatment. Nice site…

So far, only 2 cases of PML have been recorded among Tysabri recipients since the FDA allowed it back on the market…oddly both out of Europe and both announced at the same time. The FDA apparently considers 1 case per 1,000 recipients to be within acceptable risk/reward ratios. Currently, approx 32,000 recip. are receiving Tysabri, with only 2 reported PML cases…that is pretty astounding and demonstrates, at least for now, a much lower incidence than is apparently acceptable. My understanding is that through vigilent screening, PML can usually be caught early and treated successfully; I am unclear re. once PML is treated whether that person can safely go back on Tysabri treatment.

]]> By: John A. Auriemma D.O. http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/comment-page-1/#comment-4169 John A. Auriemma D.O. Tue, 05 Aug 2008 16:02:27 +0000 http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/#comment-4169 Hello, this is my first comment on this post. I also have MS for 25 years and have been on Tysabri for 9 months. I am also a physician! And I too am startled about the two recent reports of PML associated with Tysabri. Yes there are risks with every treatment vs. its rewards but if the patient's treatment with Tysabri is handled correctly (I mean monthly blood draws or lumbar punctures to moniter the presence of the virus resposible for PMLs) then I feel there's nothing to worry about. Because if that virus's core antigen is detected, then the patient will be taken off the drug and the patients WBCs will force the virus back into dormancy!! I don't know if these two people were being monitored or even if they were on any other immunosupressive drugs, such as Copaxone or any of the interfereons. So I don't know what exactly to make of this news. Hello, this is my first comment on this post. I also have MS for 25 years and have been on Tysabri for 9 months. I am also a physician! And I too am startled about the two recent reports of PML associated with Tysabri.
Yes there are risks with every treatment vs. its rewards but if the patient’s treatment with Tysabri is handled correctly (I mean monthly blood draws or lumbar punctures to moniter the presence of the virus resposible for PMLs) then I feel there’s nothing to worry about. Because if that virus’s core antigen is detected, then the patient will be taken off the drug and the patients WBCs will force the virus back into dormancy!!
I don’t know if these two people were being monitored or even if they were on any other immunosupressive drugs, such as Copaxone or any of the interfereons. So I don’t know what exactly to make of this news.

]]> By: David S. Williams III http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/comment-page-1/#comment-4135 David S. Williams III Sun, 03 Aug 2008 01:48:12 +0000 http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/#comment-4135 Lauren, Thank you for your comment. We have updated the title as it referred to the prior two deaths as well as the newly reported cases of PML where people have not died. For clarity, we have changed the title per your suggestion. As Paul wrote in his piece, there are almost 300 patients on Tysabri on PatientsLikeMe. These people get information from each other and are well versed in the health care literature. You are a shining example of the type of person who joins PatientsLikeMe. Thanks again, David and The PatientsLikeMe Team Lauren,

Thank you for your comment. We have updated the title as it referred to the prior two deaths as well as the newly reported cases of PML where people have not died. For clarity, we have changed the title per your suggestion.

As Paul wrote in his piece, there are almost 300 patients on Tysabri on PatientsLikeMe. These people get information from each other and are well versed in the health care literature. You are a shining example of the type of person who joins PatientsLikeMe.

Thanks again,
David and The PatientsLikeMe Team

]]> By: Lauren http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/comment-page-1/#comment-4134 Lauren Sat, 02 Aug 2008 23:25:41 +0000 http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/#comment-4134 Your headline: "Tysabri And The 2 Patient Deaths Reported" isn't correct, and is extremely misleading... these two patients are alive, and one is already home while still ambulatory after plasmapheresis (which removes Tysabri from the body), and the other MS patient is currently in the hospital receiving plasmapheresis as well. It would behoove all current Tysabri patients to get the true and correct facts, rather than rely upon erroneous publications such as Paul's.... IMHO Lauren Your headline: “Tysabri And The 2 Patient Deaths Reported” isn’t correct, and is extremely misleading… these two patients are alive, and one is already home while still ambulatory after plasmapheresis (which removes Tysabri from the body), and the other MS patient is currently in the hospital receiving plasmapheresis as well.

It would behoove all current Tysabri patients to get the true and correct facts, rather than rely upon erroneous publications such as Paul’s…. IMHO

Lauren

]]> By: Kakijade http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/comment-page-1/#comment-4120 Kakijade Fri, 01 Aug 2008 18:38:16 +0000 http://blog.patientslikeme.com/2008/08/01/tysabri-and-the-2-deaths-reported/#comment-4120 Good article Paul. Thanks! Kim Good article Paul. Thanks! Kim

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