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

Thank you for the reply. My internist is working on this. There is a 6 to 8 month wait for an appt with a rheumatologist in our region. I do have very real and significant damage in my lower back and I am having MRI of cervical spine and a total body CT this week to make sure nothing is wrong there. None of the other labs ( and the blood work was extensive) signaled anything of concern. The doc started high dose prednisone because my CRP had risen 22 points in 5 weeks...he wanted to lower the inflammation. I did tell a difference by the end of the first day, but had hoped things would be basically gone by last night. This morning I am feeling better..subtle but real.

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@desertsooner, I'm assuming you are taking the 40 mg prednisone in the morning. Some members have split their dosage between morning and evening to get them through the night with lower pain. It may be worth discussing with your doctor if your pain is better during the day but then gets worse overnight. I did find an older article that discusses the difficulty in diagnosing PMR that you might find helpful.

Excerpt..."Overdiagnosis of PMR may cause more problems compared to underdiagnosis. The 2012 PMR criteria proposed by European League against Rheumatism/ ..." -- Diagnosis of polymyalgia rheumatica usually means a favourable outcome for your patient:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5644293/

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@desertsooner I can only have empathy because we have some similarities. I retired from nursing at age 62 and I'm currently 66. I also have a mess for a spine which is being called "mostly degenerative" which I find hard to believe because I have never injured my spine. I do have a long hx of inflammatory arthritis which always attacked my spine. The inflammatory arthritis was diagnosed at age 33 and PMR was tacked on at age 53.

Prednisone has been both a blessing and a curse. I took it intermittently at high doses for relatively short periods of time of 1-3 months for each flare of inflammatory arthritis. PMR, on the other hand, was treated differently and the "usual" starting dose is 20-30 mg tapering to 10 mg over a couple of months and then 1 mg per month thereafter. It never seems to work that way in reality.

Prednisone is a tough medication to take and your starting dose of 40 mg for "just" PMR would be considered high. People with "just" PMR usually obtain almost complete relief with a starting dose of 20-30 mg.

I'm already aware of awful stories about being diagnosed with PMR. I understand not wanting to go into details but details are important. You never know who might come along and who is able to offer good advice and be helpful. Feel free to share your details. Welcome to the forum.

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@desertsooner, I'm assuming you are taking the 40 mg prednisone in the morning. Some members have split their dosage between morning and evening to get them through the night with lower pain. It may be worth discussing with your doctor if your pain is better during the day but then gets worse overnight. I did find an older article that discusses the difficulty in diagnosing PMR that you might find helpful.

Excerpt..."Overdiagnosis of PMR may cause more problems compared to underdiagnosis. The 2012 PMR criteria proposed by European League against Rheumatism/ ..." -- Diagnosis of polymyalgia rheumatica usually means a favourable outcome for your patient:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5644293/

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Hello, I just found this group today. I have been diagnosed with PMR for the second time a few weeks ago. I started on 20 mg of prednisone a couple of weeks ago. I had not been to my rheumatologist for over two years so I had to get reinstated with a referral from my gp. My gp was hard to get an appointment with also so my PMR go worse than the last time while waiting for my appointment. But Advil helped until then. My previous bout with PMR was in 2016. Every now and then I thought it would pay me a visit to remind me it was still around. Usually in one of my wrists. This time it started in my right hand. My middle finger is still stiff and swollen. It was x-rayed and nothing showed. The rheumatologist thinks it osteoarthritis and she's probably right. It's feeling better on the prednisone. My other fingers hurt on that hand but are better now. My pain that started after my hand was from my hips down to my knees. The backside of my knees, the soft part, would get stiff and still do some. Then my shoulders and down my arms started hurting and my hips stopped hurting. I'm feeling better now all around with the prednisone. I don't think it worked as fast as the first time I had PMR.

I'm wondering if the stress from a trip flying to MA from AZ started my PMR. I was really thinking I should not do the trip with all the Covid stuff going on but did anyway. It was worth it too but I was stressed a lot.

I've been wondering about taking Calcium. It can interfere with the levothyroxine for my thyroid. I am hypothyroid. We had to diagnose the dosage for that at the same time as my first PMR. What fun for the doctor. I thought he must think I'm crazy. Anyhow, does anyone know what I should do about the Calcium? I haven't been taking any Calcium pills this time.

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No, I haven't done anything differently. I just hoped it wouldn't come back. I eat pretty well. My wife of 45 years sees to that. Hardly ever go out to eat and don't eat any processed foods. Don't know how to navigate fast food restaurants:) My lifestyle hasn't changed much except for slowing down. We hike and I have 6 acres to take care of which keeps me busy outdoors. Two active dogs. I'm still working and running a keyboard doing architectural drafting and design. That requires a lot of sitting which could be what is the worst for me health-wise. I walk about a mile every day I can at lunch.

The first time I had PMR I think I tapered off of it in about 14 months. No bad side effects from the prednisone that time.

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I just lost 20 pounds last year with intermittent fasting five or six days a week. I didn't expect to lose weight it just sounded interesting. So I tried it. Losing 20 pouns knocked my cholesterol down to where it should be. Not that it was way too high, just borderline. It also knocked my blood sugar down where it should be. It was borderline also at 100. So I don't want to gain that 20 pounds back. I don't eat anything until about 9 or 10 in the morning. Dinner is at 6 in the evening. That's been holding my weight right where I like it. Now I need to eat something with the prednisone I'm told and I don't want to eat breakfast again. So I've been working toward eating and taking the prednisone about 9 in the morning. Not so convenient as just when I get up. But it's an easy way to lose weight if you don't mind being a bit hungry for awhile. I started the intermittant fasting doing all my eating in an 8 hour period. Now I try to eat in an 8 or 9 hour window. Once or twice a week I have breakfast out with friends. That's the most I go out to eat.

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