"Endo I saw said she could not test my adrenals until I was completely off steroids which was very frustrating so I stopped going to her."
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There is some debate about this. My endocrinolgist said I had to be on a sustained low dose prednisone of 3 mg or less. I also had to be able to hold my Prednisone dose for 48 hours. Some say only holding your dose 24 hours is needed but it is better to get prednisone completely out of your system before having your cortisol level tested.

Doing any of this is hard for people with PMR/GCA to do if they aren't in remission or relapses can't be stopped. I would never have been tested until the biologic allowed me to get down to 3 mg and I was able to stay on that dose.

I was always on prednisone doses of 7 mg or more when I first saw an endocrinologist. The first time I saw an endocrinologist she said I needed to talk to my rheumatologist to see if I could get on a lower dose of prednisone and then she might be able to help me. I think she talked to my rheumatologist too because it seemed to spur my rheumatologist to try something new.

A year later, my rheumatologist asked me if I wanted to try Actemra (tocilizumab) if he could get it approved. He talked about new research about Actemra being used to treat GCA that was "promising." However, he needed to seek approval for me to try Actemra for PMR. All this happened more than 5 years ago. Now Actemra is FDA approved for GCA and Kevzara is FDA approved for PMR.

Actemra worked for me but not immediately. It took me about a year to overcome adrenal insufficiency.