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Do I have polymyalgia rheumatica?

Polymyalgia Rheumatica (PMR) | Last Active: Aug 5, 2023 | Replies (48)

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@emaureen

I'm 79 with "extreme risk" osteoporosis and really didn't want to use prednisone, but the pain was too bad. Also was fearing the possible side condition and that the PMR might spread to my legs rather than being restricted to my upper arms and shoulders. Then I was given 15mg Prednisone, and waited. And waited. On the second day there was slight improvement in morning pain, and that was it. I'd made a bargain with the Devil, and gotten nothing from it.

It was a holiday weekend, so more than a week until I could reach my doctor. She upped the dose to 25mg on July 3rd. Next day, no change. Morning after that, there was noticeable additional flexibility and less pain. Two weeks later, I felt pretty much normal other than morning stiffness, and tapering has started. Last week I spoke to a city rheumatologist on the phone (July 27). She wants me tapering off as quickly as possible and spoke about methotrexate. But this was the thing that most surprised me. I made a comment "I guess I'll never mow the lawn again." (My assumption had been that PMR was triggered by over-doing.) Her response: "You're okay now. Go for it. Use it or lose it". At the start of the month I had to wear jeans because I couldn't handle the elastic in sweatpants. Couldn't pull up blankets. Slid out of bed because I couldn't use my arms. Oh.

So... my guess is that if you take a larger dose now, you might be done with prednisone sooner and you'd feel a whole lot better. No guarantees, of course, but right now I'm downright optimistic.

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Replies to "I'm 79 with "extreme risk" osteoporosis and really didn't want to use prednisone, but the pain..."

That’s the tricky thing… There’s so much fear of the prednisone, but the catch is if one never takes a high enough dose (assuming it’s effective in your variation of PMR) to quash the inflammation driven by the disease, it will potentially drag out longer, causing more complications, impact on quality of life and pose more of a challenge to overcome, especially for the groups who are most at risk of developing it.

It’s really tough to weigh pros and cons, and it is scary, but PMR is one of the few inflammatory arthropathies that has a relatively straightforward and effective treatment. (My dad has PMR, while I have a different inflammatory arthritis. It’s not that I was glad he had it over something else, but I was shocked that on diagnosis there was no confusion over what was the best treatment, unlike in my situation. It made the decision so much simpler.)

The side effects aren’t fun at all, it’s not a benign medication and definitely not ideal, but the pain/inflammation from PMR untreated or sub-optimally treated will exact it’s own price too. The hope is there are ways to mitigate the side effects… My dad takes Fosomax for the risk of osteoporosis, along with calcium, vitamin D and magnesium supplements.

It is still hard to feel boxed in though.

14 months since diagnosis highest dose was 30 mg, and now at 6.25 mg and hopefully dropping…