Relapse question?

Relapse question?

By kbarber2007
Posted April 7, 2008 at 4:35 pm · 7 replies
In Children with nephrotic syndrome

Our daughter is in her first relapse since being diagnosed with MCNS. Her nephrologist has uped her dose back to the 1 tsp twice daily. I was wondering how many days does it usually take for the prednisone to take effect during a relapse. She was not completely weaned off the prednisone to begin with, she had just been lowered to 1 tsp every other day last week and began to spill protein immediately. Does it take 7-21 days like they told us originally when she started the meds or should it be a shorter period before she will stop spilling? She has been peeing +3 since Tuesday of last week. She responded to the prednisone within 2 weeks of beginning treatment back when she was originally diagnosed. I am driving myself crazy!!! I was hoping against all hopes that she would be in that small percentile of kids who only deal with this once in their lives......but I guess now that we have relapsed....that isn't going to be true? IS IT?? Has anyone else had any experience with relapsing during the weaning process and then never relapsing again. Our neph told us that some kids just take longer to wean than others. Any advice would be helpful!!! I was also interested in the discussion regarding whether antibiotics can put MCNS in remission becuase our daughter was on Ammoxicillian when she was first diagnosed because she had pneumonia and I wonder if that is maybe why she responded to the meds so quickly.....just thinking out loud.........

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By minnie
Posted April 8, 2008 at 7:59 am

Hello! My daughter was dx'ed with MCNS last June at the age of 2. Since then she has relapsed twice, both during the weaning process. So now she is on a maitenance dose of prednisone every other day. And *knock on wood* this is the longest she has been on the low dose. We're going on almost a month now and it seems to be holding her.

I think this disease is just very individualizied. Everyone responds differently, which is why it is so frustrating. Even to the docs...that's why they also all have their own way of treating it and weaning it. Our doctor kept telling us that the longer she has the disease they will be able to see what treatments do and do not work for her.

My daughter was only on prednisone originally but got very sick a week after being dx'ed and was put on amoxicillan for strep throat. In my experience I don't think it helped her prednisone respond.

As far as how long it takes to respond, it's just different. The first two times it took her a little over a week to respond, the last relapse right before Christmas it took her about 2 weeks to respond. The good news is that she hasn't been as sick with the relapses as she was in the beginning. I don't know if it's because we are catching it earlier...I dip her urine everyday regardless so I can catch the relapse before she gets swollen up, etc.

My doctors also told me to expect her to relapse as most kids will with this disease. This hits especially close to home with me as I was dx'ed with MCNS at the age of 2 myself. I was treated with steroids and have luckily never had a relapse or any other trouble with my kidneys thus far. So I was hoping my daughter would be the same way. Unfortunately, it's going to be a different battle with her. She is now steroid dependant, but we are just so thankful she is responding to the steroids.

Hang in there...I know this disease is extremely overwhelming and anxiety provoking especially in the beginning. It's like a roller coaster ride at times. I'll keep you and your daughter in my thoughts and prayers for a timely response to the meds this time.

By kshearer
Posted April 8, 2008 at 9:56 am

Mary has been on Prednisone since the beginning. They have tried to get her dosage down several times but we have had no luck. Everytime we get close to getting her off she relapses. They now have her on clyclosporine and prednisone and are trying to wean her off again. We'll see. I will keep you and your daughter in my prayers.

By flannery_k
Posted April 9, 2008 at 7:42 am

Dear Friends,

My daughter Caoimhe (4 years) is diagnosed with NS, hopefully MCD. I have done a bit of reading and research on this condition. Firstly, it seems to be long term, in that one hopes that the child out grows it in adolesence. I think it is important to keep those time frames in mind. Secondly, it is common to have relapses, however, with early detection and increasing age, hopefully the severity and frequency will reduce. and finally.... your Neph is the person who has the results of all the tests for your child, they are best placed to advise you? hope it gets easier and that your child is living a normal life, my belief is that kids are resillient, give them a good positive atitude and they will cope and get better......
A Chara, Kevin.

By s-nathan
Posted May 10, 2008 at 3:08 pm

I pray your daughter does not relapse any more again.

There is a Cochrane database in the UK - a good source of medical information. They indicate that a very slow prednisone taper regimen seems to predict better outcome (vs. a fast taper). Pls check that out

Our son, with a biopsy-confirmed MCNS diagnosis has relapsed several times - sometime about a week or 2 after we switched to alternate day dosing. Good news is that he still responds to prednisone - he always seems to take 10-14 days of the highest dose to respond. Bad news is that he is steroid-dependent. we are trying a second immunosuppresant to get him of the steroid.

By tr9736
Posted June 14, 2008 at 12:40 pm

how long ago was your son dx'd? Have he been on pred alone or has he tried cytoxan or cellecpt (or something else..?)

my son has not been biopsy confirmed yet and has already been on cellcept (no luck) and now cytoxan... we just started a tapering -- he, too, as been classified as 'dependent'...

By s-nathan
Posted June 14, 2008 at 2:49 pm

Our son is almost 8 and half years old. He was diagnosed in Oct 2006. He has been on prednisone without a break for the last 20 months.

We tried Cytoxan in August 2007 (with prednisone). But he relapsed again end of November 2007.
We started Cellcept + prednisone around Feb 2008 (and stopped Cellcept for a short while after a brief try - since our son got a fever ). We reinitiated Cellcept in the spring. Our pediatric nephrologist told us that it may take some time to figure out if Cellcept actually works.

tr9736 - how long has your son been on prednisone?

SN

By tr9736
Posted June 14, 2008 at 5:22 pm

he's been on pred (hi dose) since jan 2008... tryed cellcept and didn't work. he has reached remission (2 weeks the most!) but always caught some type of cold and relapsed before we can get to a low dose... one time I could not accout for a reason for the relapse other than a mosquito bite! not sure if that did it... But after 2 days of Cellcept, he went to neg and is now starting a taper again... on his 2nd week of cytoxan.. keeping my fingers crossed.. He has gotten so heavy on pred -- he can really use some relief/break...
Tania

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