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Re: Freq. relapse/Steroid dependent TAPER Question

Posted by RalucaMac on September 6, 2007, 3:15 pm, in reply to "Re: Freq. relapse/Steroid dependent TAPER Question"
12.177.96.141

Hi, My son is 3 1/2 and was diagnosed with Nephrotic Syndrome Minimal Change Disease last Sept 2006, he's been on 2 steroid treatments - 3 months steroids, 2 1/2 months off, then 4 1/2 months on steroids and now he is in relapse again after 2 1/2 months. Doctor is talking about the 8 weeks Cytoxan treatment. I am reading all side effects and I am so concerned. I do not know what to do. I see your daughter has been over 1 year in remission following the Cytoxan medication. I hope she stays that way. How old is she? Did you see any side effects of this medication? It's so hard to decide which direction to go not knowing how your child will respond to certain medication. How long before they decided to put her on Cytoxan? How many steroid treatments and for how long? Any information on this from anyone, any up-dates would be so much appreciated. Anyone considered alternative medicine? Thank you all. Like everyone here, a very very concerned parent, Raluca --Previous Message-- : Hi, my daughter completed an 8 week course of : Cyclophosphamide in June 2006. During this : period she was also weened of Pred and : finished about a week or so before she : finished the course of Cyclophosphamide. She : also had to go for weekly blood tests during : the period. : : I'm very happy to say that she has been in : remission and off all meds since then. : However we are under no illusion that there : will not be another relapse and continue to : test for Protein every other day. Of course, : we remain positive & are grateful for : every day that she is clear. : : Best wishes & hope the Cyclophosphamide : works for your son. : : --Previous Message-- : My son, now 7 and 1/2, was diagnosed with : MCNS : in October 2006. He responded to : prednisolone (steroid) and was being tapered : off when he relapsed first time in Feb. He : went back up to the full dose and was being : tapered when he relapsed again in May. He : has steroid dependent MCNS. : : We noticed that he has relapsed both times : when the dose went down by 0.5 mg/kg : increment (from 1.0 mg/kg to 0.5 mg/kg : during 1st relapse or from 1.5mg/kg to : 1.0mg/kg during 2nd relapse). We are working : with his nephrologist to go slow (in : increments of 0.25mg/kg) during the current : taper schedule. : : We are concerned that he may relapse yet : again. His nephrologist has mentioned : Cytoxan (or Cyclophosphamide) should there : be future relapses. : Can Steve or other people share experiences : of their children being initiated on : Cytoxan....it will help us on what to : expect. : : Thank you : : :

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Message Thread: Freq. relapse/Steroid dependand - Steve 4/7/2006, 7:21 am Re: Freq. relapse/Steroid dependent TAPER Question - s-nathan July 7, 2007, 2:32 pm Re: Freq. relapse/Steroid dependent TAPER Question - stephensaffhill July 9, 2007, 4:32 am Re: Freq. relapse/Steroid dependent TAPER Question - RalucaMac September 6, 2007, 3:15 pm Re: Freq. relapse/Steroid dependand - Mike 4/29/2006, 6:19 pm Re: Freq. relapse/Steroid dependand - Dylyssany 4/27/2006, 1:20 am Re: Freq. relapse/Steroid dependand - Steve 4/28/2006, 9:22 am Re: Freq. relapse/Steroid dependand - Wendy 4/7/2006, 8:50 am Re: Freq. relapse/Steroid dependand - s-nathan May 31, 2008, 12:04 pm « Back to thread

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