I'm new to this forum and new to the disease. I was diagnosed with lupus nephritis in March of this year and kidney disease in May as a result. I'm having a hard time figuring out when exactly my flare is over and when a new one might be starting. I was discharged from the hospital at the end of April and could see and feel myself getting better until I plateued. I didn't know at that point whether I was still in a flare- more tired than usual, didn't seem to have great stamina, still achy. I expected some of this to a point of course, but maybe not to this degree- I thought I'd be able to walk up a flight of stairs without my legs feeling like they were going to buckle let's put it that way. It just seems no matter what I do I can't strengthen past a certain point. Mid-May I began tapering from 60mg of prednisone down (now 15) so that CellCept (1500 2x a day) could take over.
So about a month ago I started experiencing EXTREME fatigue. Just sleeping whenever I could get it, and the only time I could recall doing that in recent time was right before my first flare. Sometimes it will turn into me sleeping for 16 hours. It's a physical effort for me to get out of bed sometimes. It has nothing to do with motivation or not wanting to. My appetite started to decrease around the same time. Now I'm to the point where I eat about once a day. My stomach is a complete mess. I have had loose stools for 2 weeks straight without missing a day and nausea for a week straight and taking phenergen everyday at least once. I've also had achiness in my hands, wrists and elbows which are usually not my worst spots (again, mostly happened before my first flare). Hair has also been coming out it seems in much greater quantities in my brush.
Now, my primary care dr's (who I've only been with since May, post-hospital) first thought was that maybe I was having a reaction to coming off the prednisone. And at that point I had just gone from 20 to 17.5 when the real stomach upset started. My nephrologist, who's been with me through this entire process from pre-diagnosis on- believes it may be the beginnings of a flare. I've yet to be able to see my rheumatologist, but via email she expresses that these aren't all symptoms of the active disease ( I also urinate quite frequently and get "the spins")- so I do assume some of it has to do with the kidneys and probably also the meds.
My questions are- does anyone have experience with prednisone withdrawal and do any of these symptoms fit? Also, as silly as I feel asking this- how do you know when your flares are over? My bloodwork is stable but obviously not 100%. I know everyone's different, but do you have patterns with your flares? Do any of you have symptoms like this but aren't in a flare? I feel like sometimes I'm looking too hard for something that isn't there. I certainly don't WANT to go into a flare, but I'd like to know the reason for all these extreme symptoms. Anyone's past experiences would be so much appreciated- I'm trying to learn as much as I can. Thank you!