New PMR patient, wondering if mornings will become pain free someday

Posted by tedmbrady @tedmbrady, Sep 3, 2023

I am 69, fairly active, avid golfer, etc. After dealing with hip, hamstring and especially shoulder pain and extreme soreness I had my CRP measured a little more than a month ago (23.8) and was fairly quickly diagnosed by my GP as having PMR. I started with 15mg prednisone and after a week went to 20mg. This dosage allows me to play golf and be pain free (mostly) by midday. They referred me to a Rheumatologist whom I see on the 19th for the first time. I have a second blood test this Tuesday (5th).

Question: can I anticipate ever being pain free first thing in the morning (only shoulders hurt, but pain is not inconsequential)? Or is this an indication that maybe 20mgs is not yet enough? I realize I'm only 4-6 weeks into this, but other threads suggest the prednisone should be able to wipe this out for now (I realize it is with me forever and might rear its head in months or years, but hoping this first episode finally goes away for awhile).
Thx
Ted

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@chzuck

All good information. Would like to hear of those who went on Methotrexate. I am at that point of trying to decide. I am tired of the skin tears and red blotches from bumps. Is it merely a trade from one set of bad side effects to another? Is it worth doing?

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I’d say yes. Short term prednisone is a miracle drug for pmr but long term can be a nightmare. I am on 25mg of methotrexate and 9mg pregnisone with the goal of getting off pred by Dec. 1. At the beginning of taking MTX I had two days of blech…headache, nausea, fatigue, dizzy, but now have one day of fairly mild symptoms. Gets a bit better every week.

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Your rheumatologist will likely order more studies to
exclude other diagnoses. A baseline Dexascan is helpful
in the event you need long term prednisone. Stay active
and stretch before golf. There are newer treatments available such as IL 6 blockers if you don’t respond to prednisone. When I hit a good drive I would say it was
the steroids. Take your calcium and vitamin D and walking helps. Once your symptoms improve it’s best
to do a slow taper.

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@seniormed

Your rheumatologist will likely order more studies to
exclude other diagnoses. A baseline Dexascan is helpful
in the event you need long term prednisone. Stay active
and stretch before golf. There are newer treatments available such as IL 6 blockers if you don’t respond to prednisone. When I hit a good drive I would say it was
the steroids. Take your calcium and vitamin D and walking helps. Once your symptoms improve it’s best
to do a slow taper.

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@seniormed thanks for the response. Talk about vitamin d and calcium. What is best supplement (brand or type)? I take a senior multi right now.
Thx

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@tedmbrady

@seniormed thanks for the response. Talk about vitamin d and calcium. What is best supplement (brand or type)? I take a senior multi right now.
Thx

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Calcium supplements can be problematic for some people, potentially causing kidney problems and artery calcification. Best to increase dietary calcium intake instead and take vitamin D3. I also take vitamin K2 which directs calcium to bones and directs calcium out of arteries. Vitamin D is best split into two doses a day to aid absorption, and taken with a meal that includes oil or fat as it is fat soluble. I take two 1000 IU vitamin D3 every day and a K2 (180mg) every second day.

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@napapos

@tedmbrady
I have been suffering with with PMR since 01-07-23. My fingers are the biggest pain problem I have. My doctor says I have osteoarthritis in my hands and the PMR causes flares in my hand and he indicated I will always have hand pain. Time will tell. Best of luck And blessings.

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I was diagnosed in November 2022. My “flares” start, and are worse in my hands. I can tell when starting as my fingers swell. Do you have swelling of your hands?

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I take my prednisone at 2:00/2:30 with a piece of cheese; when I wake up at 7:00, there’s no pain - just some stiffness.

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@trimomlewis

I was diagnosed in November 2022. My “flares” start, and are worse in my hands. I can tell when starting as my fingers swell. Do you have swelling of your hands?

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In reply to @trimomlewis . Hello there. I was diagnosed last August. That was one of my symptoms. Plus sore wrists . I was done to 3 mg of prednisone and l have the same issue again plus my ankles and feet are swollen.
Dr has updated my meds hoping for relief.

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Hi, Just to add to the confusion. When I was diagnosed in May 2023 I started with 20mg of prednisone. After a few days I reported to my rheumatologist that I wasn’t experiencing the “miracle pain relief” that she had said would happen. She then upped my prednisone to 30mg and BINGO I was pain free. I have continued to be without pain during several months of tapering. Am now down to 8mg. No side effects so far from prednisone (that I can observe). Also taking calcium, vit D, vit K, Pepcid, and fozamax, plustrying to keep to an anti inflammatory diet. My goal is to get off the prednisone without any flares. Right now I am tapering 1mg per month so it will be some time in 2024 that I will reach this goal. You mentioned that you will be seeing a rheumatologist soon. Hopefully you can get answers to all your concerns. Good Luck, be patient. Liz Ward

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@bevletsgethealthy

In reply to @trimomlewis . Hello there. I was diagnosed last August. That was one of my symptoms. Plus sore wrists . I was done to 3 mg of prednisone and l have the same issue again plus my ankles and feet are swollen.
Dr has updated my meds hoping for relief.

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If you don't mind me asking, what did your doctor change for your meds?

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In reply @trimomlewis . He changed my meds because of the flare up. Increased my prednisone, methotrexate and put me on hydroxychloroquine. Starting to feel a bit better since the increased dosages. ( just over a week ago) Will go back in 3 months for another checkup.

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