First, I wish to say that it takes fortitude to come off prednisone like that. On the other hand, it isn't entirely safe to taper off so quickly without guidance from a doctor. I want to stress that an endocrinologist may be useful at this stage. Your having problems between 3 mg and 8 mg of prednisone is consistent with a low cortisol level and secondary adrenal insufficiency from long term prednisone use.

An endocrinologist told me when it "might be safe" to stop taking prednisone after being on it for 12 years. She was very adamant that I should take prednisone again for any reason if I 'felt the need". She went into great detail about what I should do if the need for more prednisone arose. She wouldn't predict what would happen because she had no way of knowing. She just said that I could call her directly if I needed prednisone again because she wanted to know about it.

As it turned out, I also had an "eye scare" within a week of coming off prednisone for the first time in 12 years. I also needed to go back on 60 mg of prednisone and that completely demoralized me. I understand that feeling and things were looking bleak to say the least.

My eye problem turned out to be a temporary setback. My ophthalmologist, rheumatologist and endocrinologist all weighed in and provided me some options that didn't involve long term prednisone again.

I listened to all of my doctors. I tried a different biologic for a few months that my ophthalmologist said would be optimal for my eye problem which wasn't GCA. My eye problem was something else that can cause blindness and my ophthalmologist didn't think Actemra would be the best treatment for it.

The second biologic I tried didn't work for PMR as the pain came back and I was unable to taper any lower than 15 mg of prednisone again. My endocrinologist was concerned and said prednisone wasn't helping with my problem with adrenal insufficiency and encouraged me to taper lower.

My rheumatologist finally said that it would impossible to adequately treat everything that was going on. So no, I'm not completely back to normal but infinitely better off than when I was taking prednisone for everything.

My rheumatologist eventually provided me with a couple of choices and let me decide what I wanted to do next. I'm happy with my choice to go back on Actemra again.

My quality of life in much better now that I have been off prednisone for a couple of years.. I have been able to stay off prednisone and most things are improving rather than getting worse.