i am a 26 yr old mother of a 16 month old with lupus nephritis. I have had protien and blood in urine since may 2001 and had a kidney biopsy in oct 2002 for diagnosis of lupus. Since then i have been on low doses of prednisone and monopril to block some of the protien spillage. However my levels of protien fluctuate and now are dagerously high (more than 8 grams). My kidney function is still fine. I start a new treatment in a few weeks. I take very high doses of prednisone for 2 years with once a month I.V. cytoxin treatments for the first six month and then every three months after that for the remainder of the two years and lupron injections to protect my ovaries for six months and depo injections every three months after that. Side effects are lower with I.V. cytoxin that oral cytoxin. However, i will have no immune system for the next 2 years. That is the worst complication. Has anyone else had or going thru this treatment or something similar?
Your situation is VERY similar to mine. I was spilling over 12 gr of protein into my urine a day. The treatment you described in your post was almost exactly what they wanted to do for me. I was sent to a nephrologist but once he started seeing me, he decided he wanted to try something else first. So, I'm on 10 mgs. of prednisone/day, along with the usual lupus drugs, but in addition, he wanted to try Cellcept which is indicated for people who have had a kidney transplant-it's to prevent the body from rejecting the kidney. At the time, he told me that there were some studies being done elsewhere which he had been following where they were trying this in Lupus nephritis. So, he wanted to try that on me. My nephrologist has a good reputation nationally, is kind of old so he's been around awhile.Anyway, so far-so good! My protein is down to just over 3grm per day. I take 1500 gr of Cellcept /day. They want to eventually get me off of the prednisone and get me on methatrexate in addition to the Cellcept. So, I'll probably start weaning off of pred soon once I start the methatrexate.
Over the past few months, I've seen quite a few articles about the good results they are having using this drug in lupus nephritis. Actually, my rheummy was a little concerned about it and took the inititive to contact another colleague of his at Johns Hopkins who told him that they were in fact getting excellent results with this.
Please ask your doc about it. If he's unfamiliar with the treatment and would like the name of my nephrologist to call him, I'd be happy to pass it along!
hello-- I would love any information about your case. All your symptoms and treatments. All of this is so scary, in order to treat lupus it has horrible side effects. I have heard bad things on cytoxin but i didn't know there was another alternative.