Hey Becky, I hope you find good primary care and rheumatology doctors. As you navigate this disease, it will help to hear other people’s experiences, so I’m sharing key parts of mine.
My symptoms began overnight (9/21), full on, with such debilitating pain that I couldn’t get out of bed without help, couldn’t lift a cup of coffee to my mouth, couldn’t dress…. Initially I did lots of physical therapy just to move in the mornings so that I could continue through the day. When I did see the rheumatologist I began with 20 mg of prednisone (12/21). Over the course of a year, I tapered to 1 1/4 mg every other day, which lasted about three weeks before I stopped altogether (12/22).
I tell you all of this to give you a sense of what the tapering process was for one person. However, I think the biggest tool for me was exercise—not sprints or anything crazy (I’m almost 70) but walking, doing yoga, or getting into my kayak in the mornings. Most of the worst stories I’ve heard happened to those people for whom pain or depression ruled out mobility. I am not saying it was easy, but it was crucial!
One other thing was getting the Reclast procedure, which insurance covered, to prevent bone density loss from taking prednisone.
I feel so fortunate to be in that 70 or something percent that waves goodbye to PMR within two years. My fingers are crossed it doesn’t return. I wish you well!