My 3 1/2 year old son, has been on cytoxin for 7 weeks, we have 5 more to go, he still has not gone into remission. Has anyone ever experienced this before. What was your next course of treatment? We have been on Predisone since he was diagnosed in Sept 2007. Thanks!
HI there, My son alex was diagnosos at 3 with nephrotic and was on and off predisadone for years until last year when our renal specialist put him on levimasole. Apparently it is a drug used for colon cancer but works well with the kidney. He was on it for a year and has not had and protein for over a year and a half with no side effects from the drug. He is now eight and is finally losing weight and getting better at school.
Hope your son is ok and this info helps
ness
Hi,
My daughter was diagnosed with MCNS w/mesangial proliferation in 8/04 at age 2 1/2. She also went the course of cytoxan (got into a 7 month remission right at the end of the 12 weeks) , then cyclosporine for 1 yr and then prograf for 1.5 yr and now is on prograf, cellcept AND prednisone. she spontaneously goes into remission on her own(w/o being pulsed) but has proven to be steroid dependent eventhough her creatinine is .3! There IS hope out there if cytoxan does not work. There are other meds. Prograf is "stronger" than cyclosporine and still carries the risk of scarring the kidneys - but when monitored properly can be quite effective. My daughter has had a particularly difficult time over the past 4 yrs but I still have hope the Johns Hopkins will find a mix of meds that will allow her to get off of the steroids and grow.
I KNOW how hard it is, but keep your hope and faith - and stay the course, there are miracles out there. I just heard from a family that had 2 boys with mcns, one of which went all the way through the prograf regimen for a year and he is now off all meds at age 4! The other did respond to cytoxan and has been fine for 2 years. It can happen - I keep praying it will happen for my little girl and your son too!!
Add to the discussion