KidComm Nephrotic Syndrome Parents Place : Re: Freq. relapse/Steroid dependand

[ 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 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?
:
:
:

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

Subject:

Message:

--Previous Message-- : 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? : : : : :

Optional Link Title:
Optional Link URL:

By posting, you confirm that you have read and agreed to be bound by the board's usage terms.

Please consider supporting our mission

Kidcomm is an online resource for parents of children with nephrotic syndrome and other kidney diseases. Your donations help keep Kidcomm, it's email support groups and this bulletin board up and running. Please consider donating in order to help us help you.

Click here if you would like to donate

Vist our home site Kidcomm - An online resource for Parents.

Join one of our private email support groups for parents and kids!
See our selection of books to help you cope!

See our selection of books to help your child cope!