tag:blogger.com,1999:blog-3404949320886493136.post7462887227428562269..comments2009-09-23T22:54:53.209-06:00Comments on The Secret of My MS: Yes, It's been a whileStevehttp://www.blogger.com/profile/15782659419450841744noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-3404949320886493136.post-30581279591896312922009-01-18T17:39:00.000-06:002009-01-18T17:39:00.000-06:00Hi Steve,I'm so sorry that you're not doing very w...Hi Steve,<BR/><BR/>I'm so sorry that you're not doing very well right now, hopefully you'll start to feel better soon.<BR/><BR/>Having testified before the FDA AC in March 2006 at the Tysabri hearings, and after having 29 Tysabri infusions so far, I feel that I must point out several inaccurate statements made by you regarding Tysabri.<BR/><BR/>You said, "Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market."<BR/><BR/>1.Tysabri can and has been used as a first-line therapy for MS, it is <B>not</B> used only in the extreme. <BR/> <BR/>2. The FDA did <B>not</B> pull the drug, it was voluntarily removed from the market by the manufacturer (Biogen) until they could review all of the safety data from the trials before they could resubmit same to the FDA.<BR/> <BR/>3. The 3 deaths you refer to were <B>not</B> all in Europe. Only 2 deaths occurred at that time and they were in Tysabri trial patients, and neither one of them had MS, they were just severely immune compromised from prior medications they were on. Only recently was there a third MS patient(US) that passed away from PML due to the fact that she was already immune compromised due to the fact that she was previously on methotrexate to treat her rheumatoid arthritis.<BR/><BR/>What you need to understand is that PML is caused by a severely diminished immune system (or a very low immune system), <B>not</B> by Tysabri.<BR/><BR/>Tysabri is for "relapsing forms" of MS, and I don't know why you would rather be on a lesser effective MS medication (one of the ABCRs which are only 29% to 34% effective, respectively), whereas Tysabri is <B>67%</B> at preventing further relapses, slowing the disease process down,<B>and</B> has proven data showing that it is the <B>only</B> FDA approved medication where symptoms have been shown to improve in some patients and their Quality of Life has greatly improved. In addition, Tysabri is an infusion administered once every 28 days, no more shots, yay!<BR/><BR/>I hope that some of this information is of help to you and your readers, and no matter which therapy you choose to treat your MS, I support you in your choice, but just please make it a fully informed choice.<BR/><BR/>I send you all my very best..., <BR/><BR/>Lauren :)Laurenhttps://www.blogger.com/profile/18373904711547103825noreply@blogger.comtag:blogger.com,1999:blog-3404949320886493136.post-31226611157718940672009-01-18T09:12:00.000-06:002009-01-18T09:12:00.000-06:00Go with Tysabri. The risks otherwise are very clea...Go with Tysabri. The risks otherwise are very clear, as you are now experiencing them. The very slight risk of PML looks like it is less than one-in-a-thousand. I'm on my sixth infusion. Zero side effects and it will probably keep me deficit-free. Take care.Anonymousnoreply@blogger.com