Hiya Rush and welcome from another newbie,
I have had SLE for 30+ years and have been on steroids since the day of my diagnosis. They saved my life, I was only a youngster when I was put on them, after serious talks between my parents and the doctors. My parents knew it was the best chance I had of surviving. I had lots of problems with the illness at the time. I had JRA too and was in rather a mess. I started on huge amounts and then over the years the dosage was upped and then brought down and so on, until I was able to assess my own needs where it was concerned.
I get to as low a dosage as I can with it so that when I get a bad flare I can up it and really feel the benefit. I then taper in my own way, the way that is comfortable for me and then I am on an "even keel" as it were.
I am never going to come off steroids, but I didn't have the benefit of all the great medications there are now for lupus back then as a child, so I am content to be treated with steroids, plus other medications. I can't take NSAID because I have lots of other medical conditions besides SLE that require serious treatments.
Unfortunately for me, I was never given any treatment until about 2 years ago for osteoporosis prevention. "Too late" is the cry now, I have it quite bad in my spine. Just my personal feelings now, but without steroids I know things would have been so very different for me.
Take care.
goldenwings 