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Re: Steroid resistant nephrotic syndrome

Posted by tanya clegg on July 4, 2009, 9:31 am, in reply to "Re: Steroid resistant nephrotic syndrome"
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hi there bob,my name is tanya my son josh has had ns since he was 3yrs old he is now nearly 11yrs old he has used the drug called cyclophosphamide which i think is the drug that you might off used for your daughter it worked miracals for my son he was on it for 12 weeks then he was clear for a whole year but then he relapsed he has been on a drug called cyclosporin for 4yrs now and every time he relapses he goes on to 80mlg a day pred steroids but for the last year everytime he goes into remission he relapses in a week so he has to go back on to the 80mlg pred a day ,i feel like we are going round in cycles with my son i feel that they are not doing enough for him, how have you gone on with your daughter has she always relapsed and gone into remission or is my son having a real bad time with it and can i ask you what type off drugs have they used on your daught to try and help her, it would be nice to hear from someone with the same illness as i dont no anyone with this illness , many thanx tanya.... : My daughter has had NS for almost 20 years. : She got it when she was 14 months old and : was on and off pred for several years. She : had the biopsy at 16 months. When she was : in third grade she missed a year of school : and became resistant to the pred. She : actually became almost poisened by the : increased pred the Dr was giving her. : Finally, she received a type of chemo : therapy (I don't remember the name of the : drug) that put her into remission. She is : now 21 and relapsed last fall. She is back : on pred and was doing well until this week. : : Good luck with your daughter. There is a : lot of info out there that says a lot of : kids only have one or two cycles of illness. : : Good luck, : Bob : : : --Previous Message-- : My 7 year old daughter was diagnosed with : nephrotic syndrome almost 4 weeks ago. She : is being treated with prednisone, but so far : apart from a reduction in her odema levels, : there has been no response. Can anyone tell : me what happens next. Her paediatrician is : suggesting she will need a biopsy done at : the 4 week level if her urine is not free of : protein. I feel so helpless not knowing : where we go from here and what other : treatment options are available. : : :

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Message Thread: Steroid resistant nephrotic syndrome - Vicki 3/7/2006, 5:37 pm Re: Steroid resistant nephrotic syndrome - Bob January 9, 2008, 11:14 pm Re: Steroid resistant nephrotic syndrome - tanya clegg July 4, 2009, 9:31 am Re: Steroid resistant nephrotic syndrome - RalucaMac January 21, 2008, 6:43 pm Re: Steroid resistant nephrotic syndrome - Dawn 3/9/2006, 5:39 pm Re: Steroid resistant nephrotic syndrome - PAWAN 3/8/2006, 6:50 am Re: Steroid resistant nephrotic syndrome - s-nathan December 17, 2007, 5:03 pm Re: Steroid resistant nephrotic syndrome - PAWAN 3/8/2006, 6:40 am Re: Steroid resistant nephrotic syndrome - Darka 3/10/2006, 6:15 pm « Back to thread

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