Living With MS

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

Sunday, January 20, 2008



My Tysabri Diary...

A young MS patient that I have been communicating with (Lauren Parrott-she has been keeping a UTube video diary of her Tysabri experiences), posted a video last night regarding some answers that I gave her (my opinions) to some of the questions that she was asking me. What a total surprise! I can tell that she is feeling pretty good about doing that video as she is helping other MS patients have a little bit better understanding of Tysabri. Comments left have encouraged her tremendously.

She sent me the link for the video, and after viewing it, I wrote back to her telling her what a fantastic job she did.

I did point out one teeny-weeny itsy-bitsy omission that she made, which was corrected by her in a short subsequent video.

When I wrote her, I had indicated the following: "You stated in your video that Tysabri does not cause problems with your organs. I believe I wrote to you that"...Tysabri does not cause problems with organs like steroids do" (kind of a big difference between the two), and I gave you the Tysabri label as a reference (specifically, page 13 that states 'abnormal liver function tests') - which were pretty much equivalent to the placebo percentage, so no real difference there (again, only my opinion). I just don't want anyone thinking that there is no risk whatsoever, because there is always a risk with any drug that a problem could develop in a patient, even when using aspirin. You might want consider correcting that in your next video so as not to mislead other MS patients. (I think I worry too much - laughing at myself)".

I had also mentioned to her that Tysabri was approved by the FDA on January 14, 2008 for moderate to severe Crohn's disease, and she mentioned that in her short subsequent video.

She is such a sweet and delightful young lady with an extremely positive attitude, which will take her far beyond anything that she could ever imagine. I wish her nothing but the best.

If you haven't seen the video yet, she sent me a link for it (you might even leave her an encouraging comment too because she's trying to educate and help other patients [with a little bit of my help and knowledge] by providing them with accurate Tysabri information like I am):

http://youtube.com/watch?v=5h_uCtVsE3k

She also mentioned to me that she received a message from a lady that had MS and was going to start Tysabri therapy as soon as possible, and the young lady had a son that had Crohn's disease so she is going to talk to her son's gastroenterologist about Tysabri. How cool is that ?!?!

All my best,

((((hugs))))
Love, Lauren :)

2 Comments:

  • At 4:33 PM, Blogger Blinders Off said…

    Lauren,

    You are a positive inspiration and you were right to correct possible wrong information. I know you are to me.

    I am going to start a weekly post of people living with MS who post on YouTube.

    I am starting with your friend about Tysabri and find others who have YouTube videos about the "ABC".

     
  • At 5:12 PM, Blogger Lauren said…

    Awww D,

    Thank you so much for your kind words, and good luck to you in starting your weekly postings of people living with MS.

    Keep in touch, okay? All my best to you dearheart,

    Lauren :)

     

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