Heya again Staunch!
Don't know if your still looking at this thread....I just found it again! Know I had a little dejavu going on with your other thread but, well, I got Lupus and I'm a little foggy at times!
Nephritis with me was about as bad as it can get. Hard to describe everything that was going on, and it's been MANY years since. Part of my problem was that the first time I hadn't been diagnosed yet. I didn't get a diagnosis until my Kidneys were well involved. Some troubles at the time....lotsa joint pain/swelling , fatigue. To tell you the truth I just don't remember everthing that was going on. Thanks to the Nephritis I had VERY high blood press (readings in the 230/170 range at times!), retaining water badly. Was on so many meds I can't come close to remembering all of them (pills before meals, with meals, 3 times a day, four times a day......it was a full time job just to try to keep track of it all!). Was on a 2gm of salt a day diet due to the BP, so there was very little I could eat...and what I could eat was pretty much tastless. Felt horrible and really went to bed at night wondering if I'd wake up in the morning. I was very heavy, but it was due to the water retention.....couldn't wear shoes, all the water went to my feet (good old gravity!).
Was sent to a Rumy that I still see and LOVE, he's just great. First time I saw him he let me know how serious this was. Did a Kidney biopsey which only confirmed the already obvious. He said he wanted to start chemo ASAP. At this point I was will to do ANYTHING, so really looked forward to the chemo more than I was in fear of it. Rumy told me to not expect much for the first few treatments. A "normal" chemo treatment schedule (with Cytoxan) was once a month for 6 months and once every three months after that...for a total of 12 treatments. I responded to chemo amazingly well. About two weeks after my first treatment I started to pee again...and boy did I pee! Couldn't sleep at night, always had to go! My Kidneys had got back to work and were busy getting the water out of me. I lost around 40lbs in a week...all water...it felt GREAT! After 10 treatments my Rumy talked with other in his office and saw no reason to continue, I was done!
I had some VERY good years after that. Got in shape and hiked Half Dome in Yosemite (17miles, 5000' feet up, then down). So it's possible to get your life back. Nephritis did return about two years ago and although my Nephrologist said the infection the second time was worse than my first, I never felt as bad the second time. I had four chemo treatments and am once agian feeling pretty good. I walk about 2-3 miles a day and have a nutty goal to do the Dome again. Got a long way to go to get in shape for that, but I like having goals, gives me something to reach for.
Feel free to PM my if you have any questions for me. I sometimes forget about threads...like this one. May not be around this weekend......I tend to pop in at work more often than at home (shhhh!).
Best Wishes,
Eric