My first dose of Actemra was January 1st, 2019. I started with injections every 2 weeks. I was taking 10 mg of prednisone which was the lowest dose I was on during 12 years of prednisone treatment for PMR. My rheumatoogist didn't want me to take prednisone for the rest of my life.

Secondary adrenal insufficiency is a side effect of long term prednisone use. My primary symptom was overwhelming fatigue but adrenal insufficiency can also cause pain that mimics PMR.

From 10 mg of prednisone I was able to reduce my prednisone dose to 3 mg. I reduced by 1 mg per month for the first 3 months after Actemra was started. I felt well so after that I reduced prednisone by 1 mg per week until I reach 3 mg.

My rheumatologist wanted me to stay on 3 mg when my a.m. cortisol level was low. The lab test confirmed secondary adrenal insufficiency from long term prednisone use. I had to stay on 3 mg of prednisone until I could be seen by an endocrinologist. I was on 3 mg of prednisone for about 6 months until my cortisol level improved. That was when my endocrinologist said my cortisol level was adequate and it might be safe to discontinue prednisone.

I had PMR relapses when Actemra was stopped. I have taken Actemra almost 5 years now except for a couple of interruptions. My dose of Actemra has changed from injections every 2 weeks to injections weekly. This past year I have done monthly IV infusions of Actemra.

My side effects from Actemra are minimal if any. I had many side effect from long term prednisone use that are now improving. I have discontinued five medications that I was taking to treat prednisone side effects.

My rheumatologist thinks PMR might be in remission. Currently there is no plan to stop the monthly Actemra infusions because of the risk of other autoimmune conditions recurring. Actemra was used to treat PMR only but seems to help my other conditions too.