I just wanted to share with you all my experience. I was diagnosed with MCNS in May, after a renal biopsy. I have Iga deposits, which I'm told make me harder to treat and put me at higher risk for relapses in the future. I was prescribed Prednisone, 120mg every other day. My proteinuria improved over time, but by the third month (early August) it was still around 2000. (It had been at 4500 at the beginning of treatment.)
My doctor wanted me to be in remission by the fourth month, so he put me on an experimental treatment: For three consecutive days I received 1,000mg of Solumedrol, a Prednisone substitute, intravenously, at an infusion clinic. On the third day, August 15, my Albustix (protein dipstick tests) arrived in the mail, so I tested myself, and was at 300. Since then I've resumed the Prednisone (120mg every other day). My Albustix readings have improved even more, bouncing around between trace and 100, with trace and 30 being the most common readings lately. I saw my neph on Thursday, and get my official lab results tomorrow. I expect to be in remission (defined as less than 150mg of protein), or at least really close. My neph says the Solumedrol treatment is experimental -- "you won't read about it" -- but that it has worked for him on other patients as well. He also says the long-term side effects are less pronounced than for oral Predisone. Basically the idea is to "shock and awe" the body into remission.
My neph is at the Rogosin institute in NYC, one of the top kidney centers in the world, for what that's worth. I encourage anyone who is slow to respond to the traditional Prednisone course to try this. (The short-term side effects weren't fun, but they went away after the treatment was over.) Good luck!
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