Hi @deborah57, If you aren't already keeping a daily log with your level of pain when you wake up in the morning along with your prednisone dosage for the day, you might consider starting one. It was recommended to me by my rheumatologist and it helped a lot when I was tapering down on the prednisone.

It depends where you live and how easy it is to be seen by a rheumatologist. I was treated by a rheumatologist when PMR was eventually diagnosed. I think seeing a rheumatologist is the norm in the United States but probably not the norm in the UK for example.

There are "straight forward cases" of PMR that a primary care doctor can probably manage. There are also "complicated cases" of PMR when a primary care doctor might not feel comfortable with managing so patients get referred to a rheumatologist.

I was referred to a rheumatologist when a primary care doctor "suspected" PMR. My primary care doctor prescribed some prednisone to me but didn't manage my symptoms because he assumed the rheumatologist would. I was mostly "self medicating" for 6 month while nobody knew what was going on.

It took two rheumatologists conferring with each other to reach the conclusion I had PMR. My diagnosis came after one rheumatologist requested that I stop taking prednisone in order to see what was going on. I complied and stopped prednisone for a few days but not without a lot of pain.

When PMR was diagnosed, my primary care doctor apologized to me for referring me to a rheumatologist. He thought it was PMR when he first laid eyes on me.

My PMR journey was complicated and lasted 12 years before I was able to taper off prednisone. I had multiple autoimmune disorders and multiple prednisone side effects. My quality of life was deteriorating the longer I took prednisone.

My PMR pain was managed well with prednisone by my rheumatologist. My prednisone side effects were mostly managed by my primary care doctor. When adrenal problems surfaced because of my long term prednisone use, an endocrinologist was useful. An endocrinologist told my rheumatologist that I needed to get off prednisone. Getting off prednisone was possible after my rheumatologist switched me to a different medication.

Don't be afraid of prednisone but have respect for prednisone. When prednisone is taken short term, people generally don't have too many problems. Long term prednisone for more than a couple of years while on higher doses can cause a plethora of problems.

"So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you."

You are a quick learner ... especially when you say that you have even more questions! I asked many questions but the current standard of care for PMR is to take prednisone. Unfortunately, there aren't many alternatives to prednisone.

Treatment with prednisone for PMR has stayed basically the same for more than 50 years. Fortunately, there is more PMR research being done. Treatment is beginning to change and the future looks more promising.