I wanted to say welcome to the lupus forum and I'm sorry that you're one of the complicated cases. I'm one too, I have a different issues than you but most my Doctor's spend all their time worrying what's gonna happen to me next.
I have RA/Lupus/Fibro/LGL Leukemia, plus a slew of things that go with my lupus. I'm also on oxygen 24/7 and my lungs are very scarred up. I've been on prednisone for over 14 years at an average dose of 25-30mgs daily. I've never missed one day of steroids in over 14 years now.
So, I know all about those nasty side affects that you're talking about. I too, like you am on 50,000 units of Vit D weekly too, and have been for almost 6 months now. I've got osteoporosis so bad, that last year I sustained 15 fractures on various ribs. I know I don't have that many ribs, however, I did manage to fracture some of them several times. Most I think were caused from my beloved cat, Grady.
He'd stand on my chest, no matter how I was laying in bed, trying to wake me up. My last five fractures just happen with me bending down to pick up my portable oxygen to go out to my car with it. My Grady passed away almost 30 days ago, so hopefully I'll have no more fractures anytime soon. (Even tho I'd put up with them to have him back and healthy)
I get yearly infusions of reclast that's a bone building medication. However, since I'm still breaking bones with that. My Endo started me on a drug called Forteo, it's a daily shot into the stomach. It's a very small needle that goes onto a shot pen. You know the kind like diabetics use, it's simple to do and it doesn't hurt at all.
I will be doing these shots everyday until December 2015. You do the shots for two years then stop, as it can cause a very aggressive bone cancer, if you go over two years. I mention this to you, just in case your Doctors don't come up with a solution to your problem and you need to go back onto steroids.
If you have any questions, please feel free to ask. I hope you get to feeling better really soon.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.