That is a very good question.

My cortisol level improved after 6 months. I was able to stay on a prednisone dose of 3 mg or below because of Actemra (tocilizumab). PMR seemed to be well controlled or at least I kept telling myself PMR was controlled.

My cortisol level wasn't checked very often. It was an 8 a.m. cortisol level that was checked as a baseline. For my cortisol level to be accurate, I couldn't take prednisone for 48 hours.

The first time my cortisol level was checked it was low so I was told to stay on 3 mg of Prednisone.

The second time was 3 months later and my cortisol level was somewhat better. My endocrinologist said the improvement was "encouaging" but my cortisol level was still on the low side.

The third time was at 6 months. My endocrinologist said I had an "adequate" cortisol level. This was when we had a long talk about stopping Prednisone. My endocrinolgist was more concerned about my symptoms rather than my cortisol level. I didn't feel well but I didn't think PMR was the problem.

My endocrinologist didn't know what would happen if I stopped Prednisone. She said having one adequate cortisol level didn't mean it would be adequate all the time. She said the body needs different amounts of cortisol hour by hour so there was no guarantee my cortisol level would be adequate every day after I stopped taking Prednisone.

We agreed that I could probably stop taking Prednisone but I could take Prednisone again "for any reason if I felt the need." My endocrinologist said she would prefer that I tell her before I took Prednisone but I wasn't required to tell her first. She just wanted to know if I had to take Prednisone again.

I needed prednisone again for a short period of time. I actually needed 60 mg of Prednisone and Actemra was stopped. I had a flare of uveitis so it wasn't PMR. I was able to taper off prednisone quickly again after Actemra was restarted. This happened over a period of 3-4 months. When it was time to discontinue Prednisone a second time, my cortisol level was still adequate.

A year later was when I actually started to feel better. My exercise tolerance was improving and my recovery time after exercise was much better. My exercise sessions didn't knock me out anymore.

I'm 20 years older from the time I was first diagnosed with PMR. I'm not able to do what I used to do because of some other limitations. PMR is NOT my limitation and I don't think I have PMR anymore. I'm not "pain free" and I'm not sure what that would feel like anymore. The pain is well within my tolerance level. Realistically, the pain is probably as good as it will get. When my rheumatologist asks me about pain I say "no pain" but I don't think she believes me. Ironically, she says Actemra isn't a pain medication ... it only treats the inflammation. The inflammation was "negligible" according to my last set of inflammation markers.