I had a great response from Actemra. My first dose was on January 1st, 2019. It changed everything for me after 12 years on Prednisone. I have been completely off Prednisone for nearly 4 years.

The thing to remember is ---compared to Prednisone, Actemra doesn't relieve the pain instantly. It took 3 months for me to notice a difference. My pain didn't seem any less but I was able to taper from 10 mg of Prednisone to 7 mg in 3 months. That seemed odd to me because 7 mg was the dose where I usually had a flare. I got impatient and wanted to get the "inevitable flare" over with so I tapered by 1 mg per week for 4 weeks. I was in uncharted territory on 3 mg of prednisone so I called my rheumatologist for some guidance.

I was having familiar symptoms of extreme fatigue and generalized aches and pain but my symptoms weren't anything like my original PMR symptoms. When I described my symptoms to my rheumatologist, he said my symptoms sounded more like adrenal insufficiency. My cortisol level was checked and indeed my cortisol level was low. I was told in no uncertain terms that I should not taper any lower than 3 mg until I saw an endocrinologist.

Long story short --- I had to stay on 3 mg of Prednisone for another 6 months for my cortisol level to improved. I stayed on Actemra the entire time and never had a flare.

When an endocrinologist said my cortisol level was "adequate," I was told it would be safe to discontinue Prednisone. She said there was no need to taper from 3 mg to zero since my cortisol level was adequate. I did a fast taper anyway over a week or two. After a year on Actemra, I was confident it was working and "believed" that I wouldn't have a flare.

It took me the better part of one year to get off prednisone the first time after Actemra was started. You can't simply switch from Prednisone to Actemra and expect your symptoms to go away the same as when we take Prednisone.

Depending on how long you have been on Prednisone it can still be a long process to get off prednisone. The time it takes might be related to both adrenal insufficiency and PMR/GCA symptoms. Plus ... Actemra doesn't come with any guarantees it will work for everyone.