I was told there were three possibilities when I was diagnosed with reactive arthritis. The first possibility was that it could happen once and never recur. The second possibility was it could recur and then have a recurring pattern of flares. The last possibility was that reactive arthritis could become a chronic condition.

I thought I had the "one and done variety" of reactive arthritis because it didn't recur until 5 years later. After the second time, the flares of reactive arthritis would recur once or twice every year. I treated my lower back pain myself. However, my ophthalmologist said I needed to be seen if ever I suspected a uveitis flare. He made it very clear that I should never start Prednisone for uveitis before he looked at my eye first. My ophthalmologist said an eye infection can cause uveitis and the treatment would not be Prednisone in that case. Only the autoimmune type of uveitis was treated with Prednisone.

I never saw a rheumatologist during this 20 year period of recurring flares of uveitis and reactive arthritis. When I went more than a year without a flare. I thought maybe I was "over it" and I would never need Prednisone again. My prednisone supply was mostly expired so I threw it all away. I figured my supply would be replenished if I ever had another flare of uveitis.

I never had another flare of uveitis but I started to have bilateral shoulder pain with stiffness that seemed to spread everywhere. My wife made me go to her primary care doctor. I just wanted some Prednisone but I didn't have my own primary care doctor. My wife's primary care doctor looked at me like I was an idiot and she said I needed a rheumatologist.

For about a year, the rheumatologists I saw thought my reactive arthritis had become chronic. They "restricted" me from taking Prednisone because they said reactive arthritis wasn't treated with long term Prednisone. I managed to find a "sympathetic" primary care doctor who tried to help me. He prescribed limited amounts of Prednisone to me. When I told my rheumatologist how quickly the "shoulder pain" disappeared when I took Prednisone they said shoulder pain wasn't a characteristic of reactive arthritis. When I told them I never had shoulder pain during my 20 years with reactive arthritis --- PMR was diagnosed. When I told my primary care doctor about the PMR diagnosis, he said that was what he thought it was all along. However, he was listening to the rheumatologists who were telling him it wasn't PMR.

I didn't know what PMR was at the time. I just kept insisting I needed some Prednisone. The longer I needed Prednisone, I was convinced it was PMR because of all the shoulder pain. I was 52 years old at the time so I was old enough to have PMR. I think there was reactive arthritis mixed in with PMR and that made it impossible to get off Prednisone for 12 years.