Yes … I also needed to get down to 3 mg before my cortisol level was checked. After Actemra was started, I remember trying to convince myself that I didn’t need to take more prednisone. I wasn’t entirely convinced Actemra was working. I actually decided to get the “inevitable flare” over with so I started reducing by 1 mg per week until I reached 3mg

Being on 3 mg was uncharted territory for me. I figured Actemra was doing something or else I wouldn’t be on 3 mg of prednisone. My endocrinologist was encouraging me to stay on 3 mg of prednisone if I could until my cortisol level improved. Staying on 3mg wasn’t very easy to do. It wasn’t just pain. It was more about not feeling well along with dizziness and black out spells but I never actually passed out or anything.

After 6 months on 3 mg of prednisone my endocrinologist said my cortisol level was adequate. She said it would be safe to simply stop prednisone. Since 3 mg was a very low dose, I didn’t need to taper as long as my cortisol level was adequate. When I decided to stop prednisone I was told to take prednisone again “for any reason if I felt the need.”

A need arose shortly after I stopped prednisone the first time. I wound up on 60 mg of prednisone again for other reasons not related to PMR. My first attempt ended in failure and I truly felt defeated. However, I was convinced that Actemra worked for PMR.

My second attempt about a year later was more successful.