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Old 12-10-2009, 08:08 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Welcome Karen!

I also found that for the first year or so that I felt as if the Tysabri was "wearing off"

It's much better now, or I have gotten used to it. Hard to say since I am coming up on #34 and things tend to bleeennnd in after a few years!

I missed one infusion due to appendicitis and removal of the offending organ, and I thought it would affect me, but honestly, I was in so much pain from the surgery, and the recovery, that I was glad I didn't have to deal with infusion on top of everything else! I had major abdominal surgery because they didn't know what it was (unusual presentation)

I don't think there is much you CAN do about it. The drug company and most docs are not likely to change the schedule and give it to you any earlier than 4 weeks after your last infusion, especially now with all the new PML news. What exactly do you feel when you feel it wears off?
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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