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What is the longest time between relapses??

luckymomof4
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My son was diagnosed with NS at 2 years old (he is now 12). He relapsed multiple times over the course of about 5-6 years but responded very easily and quickly to steroids each time and did not require any other meds. He had not relapsed in 4-5 years and we (and the docs) believed that he had "outgrown" it! But just recently we have detected some protein in his urine. We are very hopeful that it is related to being ill lately, but we were just curious if people could tell us how long was the longest time between relapses?? Has anyone gone longer than five years and then relapsed? Thanks for any info!

Explore topics in this discussion:

Cyclosporine Cytoxan Prednisone Minimal change disease

3 replies

lovemykayla

Hi our daughter was just diagnosed at 2. She has been on steroids since july 09. My question is how quickly did your son respond to steroids? And how long was he on them until he went into remission? And what does was he on? Also did they do a biopsy? I'm sorry I just have so many questions and am so concerned about the future. Our Neph says most out grow this disease but I hear so many stories of it turning into FSGS and our Neph is already mentioning chemo drugs......
3+

luckymomof4

Well Max would usually respond to prednisone within two weeks and then they would begin to taper his dose and would typically be off of the steroids in three months. He would then go months or longer between relapses. I think he had a total of 7-8 relapses over about five years.

On the other hand, my daughter, Mallory who is five, was also diagnosed at three with NS (even though they say it is NOT hereditary) and things have been much different...she has continuously been on steroids since she was diagnosed in October 2007 (2 years) and has also tried a few other drugs...cellcept, cyclosporine and is now on prograf. Our neph has also mentioned cytoxan, but we will wait and do it in the spring or summer.
So we really have two ends of the spectrum. We are still very hopeful that Mallory will eventually outgrow it or at least go into long term remission since her brother did.
You also asked about biopsies--neither of my kids have had one. I think since Max outgrew his, they felt there was not a need and are still thinking it is minimal change disease and nothing more.
Only time will tell...
It is so hard not knowing what the future holds. If I can answer any more questions for you, don't hesitate to ask!
Sherry

dink2061

luckymom chances are your futures are very bright. My story is much like your children. Diagnosed at 2, recurrent attacks treated with steroids, then cytoxin put me in my final remission that has lasted 30 years!! Until a few weeks ago and somehow, someway...its back. Total chance? who knows. But have faith that your kids will live perfectly NORMAL lives. I am 43 years old, last attack before this was at the age of 13 and it left me alone, symptom free for many many years. I had 3 great pregnancies, no troubles getting pregnant and great deliveries. Keep the faith. I know this disease all too well and it is a physical and emotional rollercoaster for everyone involved but just try and keep the faith that one day...out of nowhere...you will realize that it has left. Thats how this disease works., it can come and go out of nowhere.

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