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Old 02-11-2011, 05:20 PM
roadaction13 roadaction13 is offline
Junior Member
 
Join Date: Dec 2010
Posts: 22
10 yr Member
roadaction13 roadaction13 is offline
Junior Member
 
Join Date: Dec 2010
Posts: 22
10 yr Member
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hi. I'm overdue for infusion 7 or 8 now. going through a break-up and single-parenting a 1 year old so things are really complicated. i'll try to do it week after next, so that's just a 1 or 2 week delay.

but i got the positive test result for JC virus. I know people who died of PML, because i've been an AIDS activist for 20 years and remember what it was like.

i'm really scared and sad. I don't want to be on this drug. I had 2 mild flares (sensory symptoms that totally resolveD) then a big scary one that started 2 months post-partum. I was diagnosed 3years ago but think i maybe had mild stuff going on going back 15 years before that.

So I appreciate what Tysabri has done, as far as putting the flare in check after 2 rounds of steroids and 1 round of IVIG didn't.

But the literature says that post-partum flares don't predict future progression or risk of future flares. So do I need to stay on Ty?

But now I've got likely-permanent neuropathy in feet and legs, and other more transient/less noticeable symptoms as a scary reminder that flares are real.

And I'm also scared of the immune reconstitution syndrome that could happen if I go off Ty.

I couldn't tolerate copaxone, the supposedly mild one - went down to every other day and still was too sick from it.

I'm thinking I'll stay on Ty to get through the hot summer, and then consider going off, and maybe on something else to see me through the risk of the immune reconstitution, and then decide whether to stay on or off treatment.

please share your thoughts with me. I'm sad.
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