tag:blogger.com,1999:blog-3500936220214961312.post7417951414651849273..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: More Tysabri-Related PML Deaths, Up to 20 NowLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-3500936220214961312.post-75270302629616824212011-03-07T07:19:58.341-05:002011-03-07T07:19:58.341-05:00Good morning Lisa
Many thanks for your post. I ha...Good morning Lisa<br /><br />Many thanks for your post. I have sent you a reply on twitter.<br /><br />We are based in IReland, home of Elan. My wife is case 32 - having been diagnosed with Tysabri related PML in November 2009. I have recently set up a website and Facebook page as a support forum for those wishing to get more information. www.defernotrust.org<br /><br />I have not seen your blog until now, but it looks like we share the same passion to inform where possible.<br /><br />If you wish , you can contact me on info@defernotrust.org <br /><br />Thanks<br /><br />DeclanDecohttps://www.blogger.com/profile/14642220818606948032noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-6705457616402528612011-02-19T09:31:03.160-05:002011-02-19T09:31:03.160-05:00Lisa, thank you so much for posting this. It has n...Lisa, thank you so much for posting this. It has now been 7 weeks since my last Ty infusion, we decided the benefits no longer out weigh the risks as I am JCV positive...and although Ty did stop new lesions from forming, me overall mobility has nonetheless declined in past year and a half since I started receiving it. Now of course, the question is "what next?" I have RRMS (supposedly)...but my initial exacerbations were so close together and aggressive that I was only on Copaxone (after diagnosis) for three weeks before they told me it was not enough to slow things down, I needed to be on Tysabri.<br /><br />If my insurance will cover Gilenya that might be the next choice (now I'm on pulse steroids while the Ty is clearing my system)...but it is all a little unnerving to me (pardon the pun)...Gilenya has some pretty dangerous risks too.<br /><br />Oh well. Live. Beathe. Stay informed. Pray for a cure. Enjoy each day as a gift.Laurahttps://www.blogger.com/profile/15349928247626849914noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-20518433830326890452011-02-19T08:38:45.090-05:002011-02-19T08:38:45.090-05:00I have been on Tysabri for almost four years now a...I have been on Tysabri for almost four years now and I think enough is enough. I feel as though I am tempting fate with a dangerous medicine that really is not doing its job anymore anyway, as I have deteriorated over the past two years. <br /><br />And that will leave me with...nothing. Because I choose not to go on mitoxantrone, my last resort.<br /><br />MS: the gift that keeps on taking.Mariehttps://www.blogger.com/profile/10106720865034468249noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-19610249545827070862011-02-18T19:58:36.704-05:002011-02-18T19:58:36.704-05:00Thanks, Lisa, for keeping us abreast of this news....Thanks, Lisa, for keeping us abreast of this news. Every time I hear another uptick in PML cases, I think back to that university neurology department chairman who discouraged me from going back on Tysabri when it was reinstated. "We don't know enough about it," he said. After the horrible side effects of another DMD, I was so ready to go back to Tysabri ... and now I'm grateful I didn't. And I know that many people have really benefitted from it, but still.<br /><br />JudyJudyhttps://www.blogger.com/profile/07141627284221873201noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-41179492487160976512011-02-18T19:41:40.836-05:002011-02-18T19:41:40.836-05:00It never fails to hack me off that I frequently fi...It never fails to hack me off that I frequently find information about MS drugs through the Wall Street Journal or on the business pages of a newspaper. Clearly protecting profits and keeping the investors happy is the priority here. Hello? What is wrong with this picture?zoomdoggieshttps://www.blogger.com/profile/11576886847864593216noreply@blogger.com