After 3-4 months on Actemra, my prednisone taper came to an abrupt halt when I reached 3 mg of prednisone. I was told that I shouldn't taper any lower than 3 mg until my cortisol level increased. I waited six months for my cortisol level to improve while staying on 3 mg of Prednisone.

The shocker was when my endocrinologist said 3 mg of prednisone was such a low dose that I didn't need to taper. Stopping prednisone was contingent on having an "adequate cortisol level" more than causing a flare of PMR.

I didn't have a PMR flare as long as I stayed on Actemra. I didn't feel well on 3 mg prednisone but for the first time I was able to distinguish symptoms of PMR from adrenal insufficiency. However, I was never certain that PMR was under control until Prednisone was completely stopped.

It made sense to me that Prednisone replaced cortisol at the start of PMR. Until cortisol replaced Prednisone again, I wouldn't be able to stop Prednisone.

For everything to happen, Actemra had to replace prednisone. My cortisol level wasn't going to improve until I could maintain a low dose of prednisone.

What hasn't happened yet is being able to stop Actemra so that PMR stays in remission. At least I got to zero prednisone after 12 years. My rheumatologist insists it is better to be on Actemra instead of Prednisone.

I just wish that Actemra had been tried sooner rather than later.

Jeff, what were the results of your biopsy?

Was your biopsy positive?