tag:blogger.com,1999:blog-3500936220214961312.post8257726513037216330..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Tysabri-related PML Death Cases Total 29 in July 2011Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-3500936220214961312.post-48547178212939753062011-07-18T06:02:44.647-04:002011-07-18T06:02:44.647-04:00Hi Lisa
Many thanks for the update. My name is De...Hi Lisa<br /><br />Many thanks for the update. My name is Declan Walsh, and my wife, Natalie, is unfortunately, one of those statistics, having contracted Tysabri related PML in November 2009. <br />I have set up a trust and information portal for all those that may be affected by this and would be interested in keeping in touch. Please see www.defernotrust.org (the site is offline getting some work done for a few days) but there is also a very active Facebook page (search for the Deferno Trust). <br />As a number cruncher myself, I can get very agrreived at the manner in which the stats can be just rolled out. <br />As a side, there is a conference on drug related PML in London at the EMA offices, on 25 & 26 July.<br />Thanks for your post and hopefully we can keep in touchDecohttps://www.blogger.com/profile/14642220818606948032noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-74579963045276472032011-07-16T12:05:21.810-04:002011-07-16T12:05:21.810-04:00I've been a Tysabri patient for three years. O...I've been a Tysabri patient for three years. One Monday I'll have my 40th infusion and begin year 4. I've tested negative for JCV (and I hope it stays that way).<br /><br />I was Dx with MS in early 2005. I took copaxone for almost three years. When I decided I needed to switch because I couldn't keep giving myself shots every day, I had an MRI, and we saw the number of lesions had increased from 2 to 10 in one year.<br /><br />I'm very happy on Tysabri, but I'm also wary of PML. Thanks for continuing to share this information.Susannehttps://www.blogger.com/profile/02541818947891733283noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-3108229333679817692011-07-15T21:39:56.525-04:002011-07-15T21:39:56.525-04:00Judy,
I am intrigued with the ~20% death rate of P...Judy,<br />I am intrigued with the ~20% death rate of PML patients which translates into an 80% survival rate (although we don't know the condition of the surviving patients).<br /><br />I'm a number cruncher and there would be many ways to analyze the data as a moving target. If I had complete information for other variables, it would be nice to took at them. <br /><br />But without the info, it's hard to d our own analysis. Just look at the numbers reported here which seem to be starkly contradictory:<br /><br />"...the rate is about 1.94 case per 1,000 patients on the drug between two and three years."<br /><br />vs.<br /><br />"...the rate [rises to] 3.03 cases per 1,000 patients on the drug for two years or longer..."Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-27885942332281348472011-07-15T21:19:26.596-04:002011-07-15T21:19:26.596-04:00Additional comment: that 20% is alarming all on it...Additional comment: that 20% is alarming all on its own since it's roughly 1/5 of those who come down with PML. An interesting graph would be the progression over time of the incidence of PML in all patients, and whether that is also moving sharply upward. These numbers can obviously be read and anlyzed in so many different ways.<br /><br />JudyJudyhttps://www.blogger.com/profile/07141627284221873201noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-33642497834007484872011-07-15T21:13:11.379-04:002011-07-15T21:13:11.379-04:00I think the column on the right is an interesting ...I think the column on the right is an interesting one as it suggests that PML as a % is fairly stable at roughly 20%. That paints quite a different image than the sharply upward sloping bar curve of actual incidents. <br />JudyJudyhttps://www.blogger.com/profile/07141627284221873201noreply@blogger.com