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Posted by Mike --Previous Message--
on 4/29/2006, 6:19 pm, in reply to "Freq. relapse/Steroid dependand"
72.230.177.94
Hi Steve, My daughter Courtney was diagnosed with MCNF when she was 20 months as with most of us steroids was the first treatment used. She always responded to them, but as we found out later she became dependant on them. And with every replase it took a higher dose for her to respond. At one point she was taking 60mg every day then we would ween her down 5mg every week till we'd get down to 5mg, then she'd relapse and we'd start the fustrating cycle again. it took another 9yrs to get her completely steroid free. Now don't think this will happen to your daughter. I'am not trying to discourage you, just showing you it can be done. Her doctor weened her much slower and and took us almost 6 months. It's been another 2 yrs since then and she only spills protien after a bad cold or flu then bounces back to normal after a couple of days. Right now she's on Cozaar- For high blood pressure, Cellcept. Best of luck to you and your family
: Hi all, my daughter was diagnosed with MCNF in
: June05 and has had seven relapses (including
: one now) over the past 9 months. We seem to
: be going thru the same cycle every 5 weeks
: or so although some relapses are more severe
: than others. So far (fingers crossed) she
: has responded to steroids each time. She
: recently tried Levamisole although this does
: not seem to have worked as she has had 3
: relapses since. The doc's are going to
: change the steroid weening strategy (2 wks
: on 60/day, then 4 wks 60 / alternate day) as
: they think that maybe her body cannot cope
: with a sharp reduction. Has anyone been in a
: similar situation? Also, do the relapses
: become less frequent over time?
:
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