I had PMR for 12 years. My rheumatologist says I still have PMR but it might be in remission thanks to Actemra. No PMR symptoms currently as long as I do a monthly infusion of Actemra. I haven't needed any Prednisone for about 5 years except for when I don't get Actemra.

Reactive arthritis in many ways was worse than PMR but I flew under the radar of any rheumatologist or primary care doctor. I listed my ophthalmologist as my primary care doctor because he was the only doctor I saw for 20 years after my first flare of uveitis. I had more than 30 additional flares of uveitis after the first one. Nobody knew how much pain I was having because every time I had a flare of uveitis my ophthalmologist prescribed 60 mg of Prednisone. He said my uveitis was very aggressive and didn't hesitate to increase my Prednisone dose to 100 mg if the uveitis flare didn't respond to 60 mg.

My ophthalmologist and I had a great relationship because he saw me often. He said I was skilled with Prednisone tapers because I could get myself off Prednisone so easily. Going from 60-100 mg of Prednisone back to zero in a month or two was routine for me. My ophthalmologist never wanted me to run out of Prednisone so he prescribed boatloads of prednisone as long as I could taper myself off.

Whenever I had another flare of uveitis, I knew the routine. My ophthalmologist was impressed that I had a good sense of how severe my uveitis was. One particular uveitis flare was so severe I needed 100 mg to quiet it down. I said my eye was a "lost cause." I was sure I would be blind but I "didn't care" because I felt great. My ophthalmologist verified that I wasn't blind yet but said I should decrease my Prednisone dose because he didn't want me to "feel too good" about the potential for being blind in one eye. He said 100 mg of Prednisone was my limit but he could try something else. Fortunately my eye was beginning to respond to 100 mg of Prednisone and I dodged the more drastic intervention of injecting steroids directly into my eye.

I "self medicated" with leftover prednisone that was prescribed for uveitis. I had no idea what I was doing but prednisone certainly relieved all kinds of pain. Who needs a doctor when you can take Prednisone whenever you need to? During my 20 years of taking prednisone before PMR was diagnosed, my greatest fear was what would happen if I didn't have Prednisone to take. My greatest fear was realized when I was diagnosed with PMR along with everything else. After that, I couldn't find a way to taper off Prednisone for 12 years until Actemra was tried.