Posted 4/19/2016 5:55 AM (GMT -7)
Yes, Lupus can, and often does, get more symptomatic with stress. It's important to keep stress as low as possible, to eat healthy, to get deep restorative sleep, and to slow down.
Unfortunately a lot of physical active registers as stress to the body. Normally the body can repair itself during physical training in one day. That is, lift weights one day, rest the nest, and ready to go again the third day. (I was always a runner & a bit of a gym rat.) With Lupus, I've found the repair phase takes longer - multiple days. You get sorer and stay sore longer -- because it's no longer just soreness, now it's Lupus inflammation, too. It's really important to wait until the soreness is gone before training again. You may have to wait on the 1/2 until the Lupus is resolved. I ended up stopping all physical activity for several years. (Dx in 2002, got fairly bad, then remission about 4 years ago. Still working back up to a 10k.)
Yes, Lupus is infuriatingly random, you never know where or how it's going to strike next. I have had days where it's making my hands hurt, the next day my toes feel like boiling oil has been inserted in my joints, and the next everything seems relatively okay.
Since you feel worse now than December, and your followup isn't till July -- I'd suggest seeing the rheumy again now. You may want to ask about at least getting started with Plaquenil - it slows disease progression and is usually the first medication used - takes 2-3 months to build up in the body. (I'm not sure how that works with DIL, though.)
As for the Remicade, when to stop it and what else is available -- best to ask that in the Colitis Forum, or even Crohns -- since it isn't used for Lupus, I really don't know that much about it. With the renal failure scare, I would think that would be reason enough to stop Remicade, but that's just a thought, no personal experience/knowledge in that area.
We do have a few members with DIL, but I don't recall if any of them have been on recently.
Hope that helps -