I was diagnosed with MCNS in May. Since then I've been on prednisone (120mg, alternate-day treatment), but I'm not in remission yet. Protein leakage has decreased from over 9,000 to around 2,000, but in the past month my cholesterol shot up to 733. (!)
My neph just scheduled me for a three-day infusion of Solu-Medrol, at 1000mg per day, to bring about remission right away. I'm nervous about the side effects. Has anyone ever gone through this? What's it like?
I got that in the hospital for 4 days while getting albumin and I went into remission within 1 month. I have been off all meds since May 31st and doing very well. Good Luck!
Wow -- that's great! Thanks for sharing your experience. I'm worried about the side effects but hopeful that I'll finally go into remission.
Good luck! I hope you stay in remission forever!
My daughter has FSGS and didn't respond to oral pred, cyclophosphamide, cyclosporin or mycophenolate. So she did the Tune Mendoza protocol which involves IV methylprednisilone (30mg/kg) three times a week for 2 weeks, then weekly for 2 months, then fortnightly, monthly then every 8 weeks. It took her almost a year, but she finally responded to the methylpred. (almost 2 and a half years after she was initally diagnosed) She didn't have too much difficultly with the infustions. Sometimes they made her tired. By the next day, she always had hot rosy red cheeks which lasted for a few hours. But generally speaking I didn't notice too many side effects. She seemed to cope much better with it than high doses of oral pred. I hope it works well for you.
Thanks for the insights. I'm going today at 2pm and I'm nervous, but it's conforting to know that other people have had good experiences!
what is MCNS - minimal change neprohtic syndrome????
Also, this looks very interesting to me, i've been on oral pred for a year and when I tapered down my proteins went back up to 7.5 (I've never been below 2.5).
I think I am going on Cellcept next. Man I hate this!
Yes -- MCNS is minimal change nephrotic syndrome. (Sorry for the jargon.) I had my first 1,000mg dose of Solu-Med yesterday. I didn't feel too much anxiety, but I have a raging headache and nausea. Two more treatments to go, and then, hopefully, remission.
I hear good things about Cellcept. Good luck!
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