[ Post a Response | KidComm Nephrotic Syndrome Parents Place ]

*NOTE* You must register to use this board. All posts will be reviewed before being posted. This is done for your protection and to stop spammers with nothing better to do with their time. Your post will usually show up within a few hours.

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? : : :

---

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

---

Post a Response

Please consider supporting our mission