Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Thursday, June 14, 2007



My Tysabri Diary...

I returned home late yesterday from my 9th Tysabri infusion...and it went pretty well all things considered. I had a slight headache after the long drive to and from the infusion center and the rush hour traffic (nothing that a couple of Ibuprofen and good night sleep didn't cure), but overall I'm feeling pretty strong.
My infusion nurse advised me that they are currently infusing approximately 15 patients with Tysabri and enrolling more weekly...their youngest being 23 years old with Progressive Relapsing MS.
He then advise me that he heard Tysabri is going to be used in Crohn's patients pretty soon also, or so he read on the Internet. I asked him if he knew how Tysabri works in Crohn's disease and he said no not really. So I gave him a quick and brief lesson in Tysabri and CD, and I advised him that Elan holds the sBLA for Tysabri in CD, not Biogen...and that Elan's scientists discovered Tysabri, not Biogen's, and that Elan owns 50% of Tysabri.
He then asked me if I ever heard of the National Multiple Sclerosis Society? (Sheeeesh) I said yes I'd heard of them and then I asked him, " guess what the National Multiple Sclerosis Society and Biogen did for MS patients in helping us get the drug back?" He said "what?"
I said "they did absolutely nothing...it was Elan's investors that helped a lot of us MS patients get to Washington, DC to testify before the FDA Advisory Committee back in March 2006 in our effort to bring Tysabri back to patients that want and need it." (my testimony was presented and played via videotape due to an exacerbation I suffered in Feb. 2006, arranged for and paid for by a number of the Elan retail investors out of their own personal pockets.)
So after I finished my infusion and my one hour observation time, I obtained my next infusion date (28 days away...yaaay!).
I would like to thank each person that left me a comment offering their condolences and sympathies for the loss of my Mina. You will never know how much they meant to me at that very sad time in my life...my mind and my heart still keep thinking she'll come to me (like she always did) if I call her name (sigh)...oh well........,
(((hugs)))
Love, Lauren
A very proud member of http://www.mspatientsforchoice.org/

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