Robin, my heart goes out to you - and my hugs. I know what you're going through, though my symptoms have been somewhat different. I was diagnosed about two years ago. I was in the hospital 7 or 8 times and it's taken a lot of experimentation to find something that works. We're still working on that, actually - and maybe it'll always be a work in progress. Don't give up on the treatments and medication, Robin. There are things that work, and after a long, dry spell, research is being done on new medications for SLE. I've never been on cytoxan (imuran, methotrexate, cellcept - not all at once; also plaquenil, colchicine, prednisone...and more.) Plaquenil makes an enormous difference, as Pretti in Pink says, in my fatigue level. I hope you find the help you need, Robin - don't give in to the depression. It will pass - lupus has a way of coming and going - hang in there. And come here when you need to vent or are looking for a sympathetic "ear." We'll be here!
"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."