Please look at Low Dose Naltrexone and if you are in England it will be easier to get there than in the US. Life will look better on it, I assure you. Best wishes.

I'm thrilled to hear you will see a private rheumatologist; I didn't realize you lived in the UK. On the HealthUnlocked.com forum, which I also belong to, I've come to understand the obstacles you face in the NHS system. We have them in the States too!
I know some folks, including me, are concerned about being on steroids. I, too, have osteopenia and a few other things from being on prednisone for three years. But, it is a choice I made because I knew I would not get better and my life would not get to near normal without them. It is the same for you. I cannot advise you, it is not my place, and I have no medical degree. When I weighed the side effects against the quality of my life remaining the same...I chose prednisone. Only a few months later, I had to decide whether to take Actemra as well. Once again, quality of life won. The first year was a roller coaster; pred is not a magic bullet. My life has improved steadily over the last two years.
I have so much compassion for people like myself, you, and many others faced with treating these autoimmune diseases. My motivation for being on these forums is to try to help in some small way by supporting folks and reassuring them that life does improve. I now have enough pain-free time and energy to pursue my painting.
We are the only ones who can make these decisions for ourselves. Please don't feel you were ignorant~I'd never heard of these autoimmune disorders~I'd been in and out of hospitals since I was four with one thing or another, and there was usually a fix! Autoimmune was a game changer, but @em2, you now have the chance to choose.
I wish you all the best; keep in touch.💞