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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)
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@johnbishop

Hello @cgent, Welcome to Connect. Thank you for sharing your experience with PMR. It's great to hear you are down to 2 mg prednisone since diagnosed in January. Slow and easy is a good way to taper and exercise really helps. Stress can make things worse so I'm guessing staying busy helps keep your mind away from worrying about temporal arteritis. From what I've read about 15% of people with polymyalgia rheumatica also have temporal arteritis which is about 1 in 5 odds of developing temporal arteritis if you have PMR.

I think it's important to keep doing what you are doing and be able to recognize the symptoms of temporal arteritis (https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758) so that you can address it early. When I first was diagnosed with PMR my rheumatologist and my primary care doctor would always ask me if I had any pain or tenderness in the scalp area or temples which would be an indicator among other symptoms.

It sounds like you live a pretty healthy lifestyle, have you made any other changes since being diagnosed with PMR?

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Replies to "Hello @cgent, Welcome to Connect. Thank you for sharing your experience with PMR. It's great to..."
cgent | @cgent | Jun 2, 2021

Thanks for the reply ... Tom here. What bothers me most currently is that I have tiny but noticeable sore spots above my left ear, think they are just pimples from an oily scalp as a result of Prednisone. I worry too much about constant details. Thank you for replying John. Like to hear more from you to discuss beginning and ... hopefully ... ending of PMR

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2heal | @2heal | Jun 3, 2021

So can anyone explain about the relevance of inflammation and pain as I try to taper prednisone down (started at 40mg early Feb this year to 15-20mg currently). Although I was feeling some manageable pain and soreness as I went down, my Dr ordered SED and CRP labs which showed elevated levels and he told me to increase my dosage and wait another 2 weeks or more before resuming reductions. But if I can tolerate the pain, why can’t I continue lowering my prednisone? What is the issue or why is there any worry regarding how high inflammation levels are? The side effects of Prednisone are more troubling to me right now than the PMR. But if inflammation is the greater concern I’d like to know what’s at risk.

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