Oct 102004
 

The seven and eight year data is out on the PRISMS trial and it looks very good. This must have been what the “Confidence in Your Therapy” teleconference was about that I skipped but at least I ended up reading it in this article. I don’t think I am quite living up to their statistic of a 54% fall in relapse rate. 🙁 I am holding steady with a Expanded Disability Status Scale (EDSS) of 1.0 due to my hands. (I peaked at a 3.5 in the big exacerbation) Time will have to tell if I will continue to hold off on having disease progression. I do agree with the complaints on the site that the EDSS focuses too much on whether you’re ambulatory and thus the legs. This severely discounts the problems I have had with my hands. Furthermore I agree with the assessment and critique of the “silent lesions” not being accounted for since I know I’ve had silent lesions and probably have some now. On the other hand it could probably be debated that without having any “clinically detectable symptoms” should we even want them included on a disability index?

 Posted by at 10:14 pm

  2 Responses to “Long Term Data from Rebif PRISMS Study Out”

  1. I agree that alot of emphasis seems to be placed on being ambulatory, as if this is the only disability there is. You are concerned with your hands, I am concerned with my vision, both of us are screwed if they got too bad.

    I don’t think that the ‘silent lesions’ are really silent, they are just affecting some part of us that is below our level of perception. No lesions are a good thing in my book, I have several silent lesions and I’m sure they are affecting me in a way that is not easily detected.

    Enough depressing talk for now…

    Kurt

  2. I too am more concerned about loss of sight than whether I am ambulatory or not. But that’s just me.

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