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What steroid dosage did you start on? Did you find the right dosage?

Polymyalgia Rheumatica (PMR) | Last Active: Apr 5, 2024 | Replies (154)
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@dadcue

"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.

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Replies to ""So I think I understand that the variations that I'm experiencing are normal for this disease,..."
deborah57 | @deborah57 | Mar 26, 2024

Thank you for these insightful comments. I basically diagnosed myself (I'm a somatic educator with 30 years experience in the the field of bodywork) I knew my symptoms didn't fit any regular pattern of neuro-muscular dysregulation/dysfunction I was familiar with. Even with all my knowledge I had never heard of PMR. The bilateral shoulder pain/weakness was atypical and came out of nowhere. My bloodwork came back normal. But I responded to the Prednisone diagnostic taper immediately - like within hours, my pain disappeared.

Would you mind sharing what medication you took to take off the Prednisone? Do you still take it? Is your PMR gone? Your experience sounds complicated and enormously challenging. How is your quality of life now? If these are too personal to answer I understand.

"Don't be afraid of prednisone but have respect for prednisone." - Wonderful words of wisdom. Thanks for sharing your perspective. Grateful!

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