Hi Clear Kendra, Sorry to hear you're having a rough time with the meds for so long. I've been on the dospaks before with minimal symptoms since they're such short run. But doc just put me on 32 mg/day due to pleurisy progressing to chest pains. No word yet whether it's just costochondritis or if it's settling into my heart. I had been fortunate up to now to avoid the loner term prednisone. I guess the point is, I've been on for a couple of weeks, and just got the lecture on all the side effects which sound very familiar to your post. Worst I've seen so far is the "shakes" and disruption of sleep (thus the early am email...). And as you mentioned he gave me more meds to counter act the main side effects (24 pills a day now!)
I agree that we need more targeted meds with fewer side effects. Sounds like they have some (but the words chemo and anti rejection kind of scare me away even though I know folks from my local support group who are able to reduce their pred by using those. Bottom line is when you have major organ impact, like it sounds like you did, we have to jump on the bandwagon with the existing meds for now and just try to hang in there.
Good luck with your journey. Meanwhile don't give up on who you see yourself as - what you do and what you look like are not the same thing as who you are - that's the one thing lupus can't change unless you let it.