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Freq. relapse/Steroid dependand Posted by Steve on 4/7/2006, 7:21 am 130.32.42.1 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?  Post a Response

Re: Freq. relapse/Steroid dependent TAPER Question Posted by s-nathan on July 7, 2007, 2:32 pm, in reply to "Freq. relapse/Steroid dependand" 24.123.30.56 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  Post a Response

Re: Freq. relapse/Steroid dependent TAPER Question Posted by stephensaffhill on July 9, 2007, 4:32 am, in reply to "Re: Freq. relapse/Steroid dependent TAPER Question" 130.32.42.1 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 :  Post a Response

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 : : :  Post a Response

Re: Freq. relapse/Steroid dependand Posted by Mike 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 --Previous Message-- : 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? :  Post a Response

Re: Freq. relapse/Steroid dependand Posted by Dylyssany on 4/27/2006, 1:20 am, in reply to "Freq. relapse/Steroid dependand" 60.230.195.156 Hi I am in the same situation as you. my son was Diagnosed in September last year and since then he has practically been on steroids the whole time. Everytime we taper him off his condition flares up immediately. We have just tried levamisole this last month and it didn't help at all. We are now looking at trying one of the two other medicines and are really finding it hard to decide which one to pick, either Cyclosporin or cyclophosphamide? Do you have much information on either of these medicines and if so which one would be your choice.? --Previous Message-- : 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? :  Post a Response

Re: Freq. relapse/Steroid dependand Posted by Steve on 4/28/2006, 9:22 am, in reply to "Re: Freq. relapse/Steroid dependand" 130.32.42.1 Hi there, I saw our Neph yesterday morning & my daughter is now on cyclophosphamide each day for a period of 8 weeks with weekly blood tests to check her white blood cell count. We are also aiming to get her off the steroid during this time. There can be other side effects from the drug but from what I have learned so far, these really do vary from child to child. In the UK, levamisole seems to be the first choice, then cyclophosphamide, then Cyclosporin. I know that Levamisole has fewer (if any) side effects although statistically not as effective as the other 2. I think the cyclophosphamide is more likely to hold a child in LT remission than Cyclosporin once the child has finished the course. I also now know that the body is incredibally sensitive to steroid & that large, rapid reductions may be too much for some children and can trigger a relapse. My daughter is now on a much more gradual taper though it is still too early to tell if this will work. I am still new to this myslef but am learning a great deal very quickly. The Kidcomm email group is a great place to talk to & ask questions of others who are or have been in a similar situation. Wish you the best! Steve. --Previous Message-- : Hi I am in the same situation as you. my son : was Diagnosed in September last year and : since then he has practically been on : steroids the whole time. Everytime we taper : him off his condition flares up immediately. : We have just tried levamisole this last : month and it didn't help at all. We are now : looking at trying one of the two other : medicines and are really finding it hard to : decide which one to pick, either Cyclosporin : or cyclophosphamide? Do you have much : information on either of these medicines and : if so which one would be your choice.? : : --Previous Message-- : 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? : : :  Post a Response

Re: Freq. relapse/Steroid dependand Posted by Wendy on 4/7/2006, 8:50 am, in reply to "Freq. relapse/Steroid dependand" 69.156.98.5 Hi Steve, 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-- : 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? :  Post a Response

Re: Freq. relapse/Steroid dependand Posted by s-nathan on May 31, 2008, 12:04 pm, in reply to "Re: Freq. relapse/Steroid dependand" 24.123.30.56 Our son did not have good outcome with Cyclophosphamide (Cytoxan) and relapsed again last year. For the last 2 months we are trying CellCept. Based on limited reading of medical literature, I understand that Cytoxan may be better for children who are "frequent relapsers" but NOT "steroid-dependent" (difference is in the case of steroid-dependence, the child is unable to get off prednisone). Please search on the web for New Engl J Med. 1982 Feb 25; there are also more related articles on this topic (if you google) It also looks like Cellept may be a good choice for children who have MCNS and are steroid-dependent (please search on the web for article by author Bagga in American Journal Kidney Disease 2003 Dec) Swami Nathan --Previous Message-- : Hi Steve, : : 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-- : 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? : : :  Post a Response

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