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Steroid resistant nephrotic syndrome Posted by Vicki on 3/7/2006, 5:37 pm 60.228.69.154 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.  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by Bob on January 9, 2008, 11:14 pm, in reply to "Steroid resistant nephrotic syndrome" 72.254.131.169 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. :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by tanya clegg on July 4, 2009, 9:31 am, in reply to "Re: Steroid resistant nephrotic syndrome" 90.212.232.250 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. : : :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by RalucaMac on January 21, 2008, 6:43 pm, in reply to "Re: Steroid resistant nephrotic syndrome" 12.177.96.141 --Previous Message-- : 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. : : :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by Dawn on 3/9/2006, 5:39 pm, in reply to "Steroid resistant nephrotic syndrome" 64.136.49.228 Vicki, My son was 7 also when he fell sick. They believed that he had Minimal Change Nephrotic Syndrome. The standard course for prednisone in the US is six weeks. My son did not respond to steroids. If the docs need to do a biopsy and you feel comfortable in their competency....and you have done your research then it would be good to know what exactly what the underlying issues are. There are several different kinds of therapy that they can use to combat this condition. Try to be strong and start keeping a log of blood pressure, urine protein, laboratories. The two things you must do are to research and love her bunches every day. Stay positive and if you need me I check these posts every couple of days. --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. :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by PAWAN on 3/8/2006, 6:50 am, in reply to "Steroid resistant nephrotic syndrome" 203.134.221.198 --Previous Message-- : My 6 year old son was diagnosed with : nephrotic syndrome almost 3 year ago. He : is being treated with prednisone earlier, now given medicine MYCEPT 500 MG but no permanent response so far and homopathic treatment is also done but there has been no response. Can anyone tell me what happens next.biopsy is done at PGI Chandigarh and result is " go with minimal change diease . I feel so helpless not knowing : where we go from here and what other : treatment options are available. :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by s-nathan on December 17, 2007, 5:03 pm, in reply to "Re: Steroid resistant nephrotic syndrome" 40.0.40.10 Pawan Have you checked out AIIMS in New Delhi...there are a few docs there who are publishing on Nephrotic syndrome treatments...looks like they have a group researching Nephrotic Syndrome at AIIMS --Previous Message-- : : --Previous Message-- : My 6 year old son was diagnosed with : nephrotic syndrome almost 3 year ago. He : is being treated with prednisone earlier, : now : given medicine MYCEPT 500 MG but no : permanent : response so far and homopathic treatment : is : also done but there has been no response. : Can anyone tell me what happens : next.biopsy : is done at PGI Chandigarh and result is : " go with minimal change diease . I : feel so helpless not knowing : where we go from here and what other : treatment options are available. : : :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by PAWAN on 3/8/2006, 6:40 am, in reply to "Steroid resistant nephrotic syndrome" 203.134.221.198 --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. :  Post a Response

Re: Steroid resistant nephrotic syndrome Posted by Darka on 3/10/2006, 6:15 pm, in reply to "Re: Steroid resistant nephrotic syndrome" 24.154.32.125 my daughter was diagnosed with what we thought was mcns in oct of 2005 when the steroids did nothing other then show physical improvement which comes and goes the chemical part was not improving at all about 4 wks after diagnosis and no improvement they sent her for a biopsy which shoowed the fsgs. she has been on many other meds none of which have started to work. have they done a biopsy yet? there are other meds out there that they use for this so hopefully in the long run your neph will be able to find something that works. It takes a lot of research and learning about this disease we are still new to it and have a lot to learn thankfully i have found some people i can ask questions to otherwise i would be in a world of darkness. take care and wish you the best!! Darla (4 1/2 yr old kelsay with fsgs) --Previous Message-- : : : --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. : : :  Post a Response

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