Re: Tysabri again soon?


smilinphil wrote:
> What is the general
> consensus in this group? I certainly liked the sound of one IV
> treatment every 4 weeks.

hi Phil,

the general consensus in the group? hee hee hee, i can tell you're the
New Guy!! ;-> just kiddin' around with ya. the group is made up of
individuals, as all groups are, sometimes our opinions converge on some
topics, but a lot of the time we're all over the map and not shy about
admitting it. ;->

as you get more experienced with M.S., you'll find other things you
like the sound of -- oral chemo drugs, statin drugs, pretty much
everything that doesn't involve frequent injections.

re Tysabri specifically, Phil, from what i've heard it doesn't sound
like someone in your situation would be eligible -- becase the PML
"side effect" IS a fatal one, my neuro (and reports i've read about
Tysabri) state that it's going to be re-introduced as a "treatment of
last resort," same way they describe Novantrone, and that it's only
going to be prescribed for those "who have had no results from the
other available treatments," which means they probably wont' prescribe
it for anyone who hasn't tried CRAB drugs, or for those whose relapses
are still behaving like "normal" relapses, resolving without residual
disability and leaving a decent remission interval in between.

my personal feeling is that i'm not going to take it. i don't feel at
this point that the PML concerns have been addressed adequately, or the
risks and counter-measures explained sufficiently, for me to have trust
in the process.

of course, i was NOT one of those who took it in trials or for the
month it was freely available, so i haven't had the experience that
*some* folks have described, 'feeling like my old self' or having
symptoms abate, 'on top of the world,' etc. i can see why people who've
been through the M.S. and M.S. drug wringer would be willing to accept
the risks for something that truly made them feel 'like my old self!'

i've also heard it's going to be yet another drug approved for RRMS
only, which means insurance wouldn't cover me now that i've gone to
SPMS, and whew! Tysabri is even more expensive than all the OTHER
expen$ive M.S. treatments, so my feelings are moot, since it looks like
i won't be eligible when it's re-introduced.

best,
rose

.

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