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Posted by Wendy on 4/7/2006, 8:50 am, in reply to "Freq. relapse/Steroid dependand" Levamisole won't stop relapses completely but is supposed to lessen the number of relapses, so it might be working even though she has relapsed 3 times while on it. My son was on it for 3 yrs and it did reduce the number of relapses he had. He was a frequent relapser (VERY frequent) prior to levamisole. I am glad to hear it is still available where you are! It isn't available here (Ontario) anymore. Changing the pred taper schedule is a great idea. My son could barely handle even the smallest taper. It is quite common actually but you won't find many nephs that agree with it. Most want to give quick tapers and then declare a child pred dependent. Thankfully, our neph was open minded and tried lots of different schedules. What worked best for us was a REALLY slow taper. It turned out that once we got down to 30mg alt days, he would relapse so we switched him to 30mg one day, 10mg the next and he was on the at for a while. Then we reduced it to 25mg one day, 10mg the next....etc etc etc. If his sticks even climbed slightly we kept him at the same dose until his sticks went back to trace or negative. Eventually we were down to 10mg/day and then we got picky!! We reduced to 7.5mg one day, 10 mg the next until we got to 5mg one day, 10 mg the next. Then we did 5mg one day, 7.5 mg the next etc etc etc. Eventually we were on 5mg/day so we went to 2.5mg one day, 5mg the next. Until we were finally off. This took a LONG time but this slow taper was the only one what worked for him after trying many many many different schedules. Relapses will probably become less frequent over time but there is no guarantee they will. From what I've seen, the worse time is when first diagnosed...so the first few years are pretty tough as far as having lots of relapses. Then things sort of level out and there are less relapses. Relapses can happen because of colds, flu, bacterial infections and sometimes because of things we can't see (even though I believe that just because we can't see it doesn't mean there isn't a reason). Each child is different. I don't know how old your daughter is but with many kids you will see an increase in relapses when puberty hits. Wendy --Previous Message--
69.156.98.5
Hi Steve,
: 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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