This is my second flare up with lupus nephritis. I'm 35 now but the first time happened when I was in my early 20s.
Believe it or not but I went into remission the first time using imuran prednisone and plaquenil primarily.
I was in remission for most of my 20s and up until I was 34. Probably for about 10 yrs.
This time around we did a round of cytoxan in the hospital and then started cellcept afterwards in Jan 2007. My creatinine went from 3.9 down to 2.2 in Jan 2007 after the first round of cytoxan. Ive been on cellcept 1000mg twice a day for a year now.
Creatinine has progressively gotten worse with the cellcept though. March 2007 2.5 Jun 2007 2.9 Nov 2007 3.2 Feb 2008 3.4 now it has jumped to 3.9 in March 2008.
If I went into remission on Imuran and plaquenil in the past....why wouldn't my doctor recommend it now? If the inital cytoxan helped drop my creatinine...why not try it again?
He says if my creatinine gets any worse I need to get a new kidney. No offense but I think he is a little quick to exhaust other alternatives in my opinion.
It also seemed to me like he didnt even know about cellcept until I told him about it after researching on the internet. I love my nephrologist but he does questionable things like dropping my prednisone drastically. He told me I could go from 60 mg to 30 without tapering. I couldn't believe it!
I don't know but it seems to me that cellcept may just not work for everyone.
Could I have some feedback about others and their experiences? What should I do? Should I get a second opinion? He feels this is just the natural progression of my disease.
I very much want to keep my kidney....