Hi, there. I think you will find many helpful posts about Cellcept if you do a search on this board. Some people have had very good experiences with Cellcept, although it has only been a few years since doctors actively began prescribing Cellcept for lupus nephritis, so there is no long-term record yet. There are some really informative articles out there. Try the Hospital for Special Surgery web site, they have great stuff on lupus nephritis there. I found it very informative to read the prescribing information for Cellcept on the drug maker's web site, it spells out a lot about the side effects. To make her case, my doctor printed out some articles on Cellcept for me to read, and they did help.
I am in a similar situation to you. I have lupus nephrtis (membranous). I am on 200mg plaquenil and 10mg prednisone. I began with an initial dosage of 200mg plaquenil and 40mg of prednisone almost two years ago, with my prednisone being bumped down gradually. I have been on the current 10mg dosage since last fall. I have a doctor's appointment later this week, and I am anxious to see how my kidneys are doing after about 6 months at this dosage. I am also on a beta-blocker and a statin drug, which my rheumatologist says helps to protect my kidneys and cardivascular function from being further damaged by fluid retention and the elevated cholesterol levels caused by taking steroids. So far, my nephritis has mostly seemed to go into remission. My doctor wanted me to go on either Imuran or Cellcept over a year ago, but I have refused for personal reasons, namely, I wanted time to attempt a pregnancy. I am to be married Easter weekend, so unless I get some bad news at the doctor's, I guess that experiment will begin immediately!
I do know that once I make an attempt at the pregnancy thing, I will definitely agree to take some sort of immunosupressive, most likely Cellcept or Imuran. Because I do realize that long-term, the chances are that the deterioration of my kidney disease will be slowed, perhaps even put into years and years of remission by these drugs. If you read the studies, the results do lean in the direction of fewer relapses with the immunosuppresives than with the steroids. The side effects of these immunosuppressive drugs are mostly temporary (besides infertility, which is most likely permanent). Whereas, the main side effects of steroids, namely, accelerated cardiovascular disease, joint deterioration and loss of bone mass, are permanent. It's not that the steroids don't do the job, they do, but the risk/benefit ratio can be high for some people. Some do choose to stick with the steroids and do pretty well long-term. It is all such an individiual thing.
Perhaps you are like me, the image I have in my head of people who are on chemotherapy or take immunosuppresives is that it makes them sickly in their everyday life--weak, nauseous, losing hair, etc.--like cancer patients receiving treatment. This idea is what makes me want to reject taking them, that I would look and feel sick on a daily basis, when the steroids allow me to look and feel pretty normal (if fat, lol). How wrong am I about this, guys? I have read some people's messages and know that this isn't necessarily true, that some people have no or only a little sickness or that it goes away with time.