FinalMacGyver - Tysabri

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/18/2008 2:02 PM (GMT -7)   
I noticed in the Prednisone thread that you were being told to taper completely off steroids before beginning Tysabri.  From what I was told (my doctor, the infusion nurse and the Biogen Rep) starting Tysabri on a small dose of steroids is ok.  They want you completely weaned by 12 weeks into the Tysabri treatments.
 
I started while at 16mg methylpred (~20 pred) and am now at 8mg (~12 pred equivalent).  I hope to be completely tapered in the next 2-3 weeks.
 
Of course!  It's so much better to be off and safe.  But, in the case that this is hard on you to taper first, I thought I would let you know what my doc said.  I am trying to get off asap, but when I tried to go to 4mg it was too soon.  So I will try that next week now that I've had infusion #2.
 
Anyway, just sharing, not trying to tell anyone to do something other than what their doctor says!!!!!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 4/20/2008 7:31 PM (GMT -7)   
As a new Tysabri user, I was told by my doc that they wanted me off of the Pred within 6 months. another Tysabri patient in the infusion center had heard the same thing.

Who knows which is right. but getting off of the pred would be a good thing!

JD
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