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I’m having the same issues after being off Prednisone for 2 months. My rheumatologist waved goodbye and said to take Tylenol 3 times a day, like forever. She said I now had osteoarthritis and not PMR. (General arthritis patients at Kaiser are treated by primary care docs. ) But I keep wondering if there’s more to the aftermath of PMR than is understood by rheumatology.
When I originally got PMR, I did some online searching and learned that it is a sadly “neglected” disorder in that there has not been a lot of funding or research into causes and treatment. Most likely, doctors are in the dark about the aftermath as well, leaving patients scrambling to understand what is going on. Hence this support group, which has been of great help to me.
Replies to "I’m having the same issues after being off Prednisone for 2 months. My rheumatologist waved goodbye..."
@elsbeth My rheumatologist advised taking 2 mg of prednisone a day, like forever, I guess. I had osteoarthritis (from my dad) before I got PMR (from my mom). Lucky me. After getting off prednisone and feeling fine for a couple of months I now take Alleve (naproxen) for the aches and pains. I'm giving PMR a year to scram. Not sure what I'll do if this gets worse. I'd be happy if they just did more research on prednisone and made it a less destructive drug.
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@elsbeth you said it perfectly! It’s good to know we are not alone dealing with all these questions.
Totally agree that the aftermath of PMR is not understood. It would help us if they atleast fessed up to it and provided a little direction. And told us they are seeing similar symptoms from other patients.
My Rheumatologist did however say I was doing the right thing to keep meeting with every type of specialist. But how exhausting, inefficient and expensive is that!!