Living With MS

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

Sunday, February 25, 2007



My Tysabri Diary...

I have mentioned this video to other MS patients considering Tysabri, and it bowled them over... go to:

http://healthology.healthology.com/emb_player/embedad.aspx?content_id=3981&focus_handle=multiple-sclerosis-news&brand_name=healthology&par=hgy

and please take specific note in the corresponding transcript, which states:

"
FREDERICK E. MUNSCHAUER, MD: There were two large prospective clinical trials using natalizumab, which is also known as Tysabri…And, at the end of those trials, when the patients were coming off after two years, it was quite clear that Tysabri was indeed the next generation of MS therapy.

People had fewer exacerbations, a 68% reduction in exacerbation rate, essentially twice as effective as any of the interferons or Copaxone. And a 42% reduction in the probability of going on to sustained worsening in physical impairment, as measured by one of our scales

ANNOUNCER: The new rules call for the use of natalizumab in cases where patients have failed on other medications. But there remains some room in the guidelines for doctors to use the drug initially, in some very aggressive cases of MS.

ROBERT FOX, MD: And so that wording is that it is generally indicated for patients who have not responded or who have not tolerated standard, injectable therapy. And that leaves open the option for clinicians to use it as a first line therapy in patients who we don't feel comfortable waiting the six or 12 months waiting to see if an injectable therapy will work.

FREDERICK E. MUNSCHAUER, MD: Clearly, nobody wants to see you get a 1 in 1,000 chance of having a potentially fatal viral infection. However, when balanced against the disease itself, then the be- -- then the risk-benefit equation clearly shifts in favor of allowing patients and physicians to make the choice, depending upon their perception of the relative risk."

Do you all see now why the FDA approved Tysabri as a first line AND/OR second line therapy [DEFENSE] for MS?

I will reiterate my opinion that the risk of PML is probably much lower than 1 in 1000, IF the patient has a confirmed dx of MS, is given Tysabri as a monotherapy, and is not immune compromised....the TOUCH protocol is in place to minimize such risk. Should we (MS patients) be blessed enough to fall into the acceptable categories of Tysabri's TOUCH protocol, I still believe our chances of getting hit by a moving bus are greater than ever of developing PML!

Okay time for my p.t. exercises. Have a terrific upcoming week everyone :)

(((hugs))) Love, Lauren A very proud member of www.MSpatientsforchoice.org

PS: Dr. Robert Fox's presentation (for me) was kinda difficult to follow as he is SUCH a hottie! Talk about EYE CANDY - (whew, fanning face - oopsies) ;) LOL

6 Comments:

  • At 1:52 PM, Blogger Michele said…

    Hey Lauren! Nifty blog! Thank you for creating this. Can you believe our lives sometimes? I love your attitude.
    I also owe a big debt to you for being such a proponent of Tysabri; I don't think I'd have had the courage to do this if it hadn't been for some of your posts.
    AND, btw, the PML thing is pretty much not a worry for me AT ALL, and that came from the mouth of my neuro (and everyone in the MS world knows who he is ; ). I'll tell you about that later.
    Yeah, I'm a skeptic, I'm an atheist, but my first infusion of Ty was like the closest thing to a miracle I've ever experienced. Lauren, I felt 75% better on the first day! I mean--I could not believe it. But it was me... I was looking at my hands and everything like I didn't know who I was... Incredible.
    Plus, this is the big thing for me--verbally, I'm getting back to where I used to be. My husband says, "You can talk in complete sentences again." The cognitive problems my MS was giving me were terrible. And heartbreaking, because I had a perfect verbal score on the SAT's, skipped a grade in school because my IQ was too high, yada yada yada.
    Keep up your thang, woman. You are an inspiration.

     
  • At 2:15 PM, Blogger Lauren said…

    Awww Michele, thank you - but you don't owe me anything...I'm just SOOOO happy for you!

    And ya know, I think God even gives atheists a miracle every now and then to remind them He's still around ;) (oopsie - throws hand over mouth)

    I wish many, many, many more improvements for you <--doing the Snoopy Happy Dance in my mind from my w/c for you dearheart.

    Lauren :)

     
  • At 6:22 PM, Blogger Darren said…

    This comment has been removed by the author.

     
  • At 3:43 PM, Blogger Gretchen Steele said…

    Lauren what a great blog! So much information -
    after reading this I just wanted to say taht I felt the risk for PML was insignificant for me...when I did the benefit /risk dance the benefit far outweighed the risk. By nature I am a risk taker and in every day life do things I consider far riskier that taking Tysabri - for instance riding a motorcycle with no helmet...I failed miserably on every drug we have tried so far, and Tysabri actually seems to be working and working well...so I'll take that risk and not even worry about it!

     
  • At 7:42 PM, Blogger CC said…

    Thanks for your sweet post on my site. Just wanted to let you know that I am in with Dr. Foley on April 2nd!

     
  • At 7:48 AM, Blogger Darren said…

    CC - Good for you. Foley is very good. His staff, PA/NP/office, are the best. They will help you get what you need.

     

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