1. < Polymyalgia Rheumatica (PMR)

Any difficulty in diagnosis of PMR?

Posted by crisco50 @crisco50, May 4, 2023

In my research I have noticed that many of the symptoms of PMR share many common symptoms of other diseases. For those of you already diagnosed, what was the length of time that it took to get a diagnosis?
I also read that markers in blood tests are almost normal in some cases & therefore not helpful in finding a diagnosis. Have any of you faced this obstacle in getting a diagnosis?
What was the symptom or condition that finally led to a diagnosis of PMR?

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

tjmjsjwj | @tjmjsjwj | Jun 21, 2023

After 4 doctor visits and $15,000 in testing at the ER I diagnosed myself on Google. Then went in and told them what I had and yes, they confirmed PMR. I am not settling for years of Prednisone. I started this program. Google paddisonprogram - I'm now on Day 14. I can't post the link on this.

It is worth a read. It is for RA but any people with PMR have had success. You will be amazed why you may have PMR.

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robin1040 | @robin1040 | Jun 22, 2023
In reply to @ripley "For those of you diagnosed with PMR, did all of you have severe joint pain in..." + (show)
@ripley

For those of you diagnosed with PMR, did all of you have severe joint pain in the shoulders, arms and hips that you had trouble getting out of bed or from a chair, and raising your hands above your head? I've been diagnosed with Fibromyalgia, which has similar symptoms to PMR. Mornings I have terrible neck, shoulder and arm pain and sometimes leg pains, but I don't have any of the difficulties mentioned above, although my shoulder joints are often painful. I'm trying to figure out if it might be PMR instead. Last year I had blood tests looking for inflammation markers, SED and C Reactive Protein and all were normal. I welcome any comments.

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I was diagnosed w PMR last Nov w normal inflammation markers. There’s a small percentage of people w PMR who don’t have elevated inflammatory markers. I took methotrexate (along w prednisone) for 6 mos but side effects not easily bearable. I’m still taking prednisone but less of it. Good luck.

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1 reply
ripley | @ripley | Jun 22, 2023
In reply to @robin1040 "I was diagnosed w PMR last Nov w normal inflammation markers. There’s a small percentage of..." + (show)
@robin1040

I was diagnosed w PMR last Nov w normal inflammation markers. There’s a small percentage of people w PMR who don’t have elevated inflammatory markers. I took methotrexate (along w prednisone) for 6 mos but side effects not easily bearable. I’m still taking prednisone but less of it. Good luck.

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What were your symptoms that led to your diagnosis? Thanks.

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1 reply
robin1040 | @robin1040 | Jun 22, 2023
In reply to @ripley "What were your symptoms that led to your diagnosis? Thanks." + (show)
@ripley

What were your symptoms that led to your diagnosis? Thanks.

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Pain in neck,shldrs, hips, low back, & one painful knee. As you’ve probably read on here, symptoms can vary a lot. I suggested PMR to my PCP & got shot down. She did at least refer me to a rheumatologist who diagnosed me. Prednisone is the only thing that relieved my symptoms. What a relief to discover this. It just treats symptoms though where methotrexate is what my rheumatologist calls a ‘disease modifier’ but isn’t tolerated by everyone.

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1 reply
nyxygirl | @nyxygirl | Jun 22, 2023
In reply to @tsc "Hi @gailg, I think the results of blood tests don't always cone back with high inflammation..." + (show)
@tsc

Hi @gailg, I think the results of blood tests don't always cone back with high inflammation markers with PMR. I had full blown symptoms about six months, but my blood work was fairly normal (My CRP was slightly elevated but my PCP did not pursue it). The PMR symptoms stayed with me, and I eventually developed symptoms of Giant Cell Arteritis. Then my inflammation markers were off the chart.
The chapter on PMR and GCA in Cecil and Goldman's Textbook of Medicine, suggests physicians give patients with PMR symptoms a trial dose of prednisone if their bloodwork is normal. If the symptoms go away, it's PMR. If not, it's probably something else.
I hope that helps.

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@gailg I just posted elsewhere the site PMRandIL6.com -please look at the slides where you will see that NSAIDS do not treat PMR! this is an immune cell mediated disease ! And @tsc is correct - there is literature specially about patients with normal levels of CRP and sed rate.

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kberlyhouse | @kberlyhouse | Jun 22, 2023
In reply to @ripley "For those of you diagnosed with PMR, did all of you have severe joint pain in..." + (show)
@ripley

For those of you diagnosed with PMR, did all of you have severe joint pain in the shoulders, arms and hips that you had trouble getting out of bed or from a chair, and raising your hands above your head? I've been diagnosed with Fibromyalgia, which has similar symptoms to PMR. Mornings I have terrible neck, shoulder and arm pain and sometimes leg pains, but I don't have any of the difficulties mentioned above, although my shoulder joints are often painful. I'm trying to figure out if it might be PMR instead. Last year I had blood tests looking for inflammation markers, SED and C Reactive Protein and all were normal. I welcome any comments.

Jump to this post

Initially after my first bout of Covid, 4 months later I woke up with terrible hip pain and debilitating weakness, and after I got Covid a year later for the second time (6 months after 2 Pfizer covid vaccines!) I couldn't raise my arms and my shoulder/collar bone pain was severe. After a year of testing (my CRP and SED rates were initally totally normal), I was finally diagnosed with PMR. My CRP and SED were high at the beginning of this year, and I am still on prednisone and waiting to start Kevzara next week, but when I weaned down to 1 mg prednisone and then 0 last month to see where I was with the condition, my CRP/SED was again normal. Go figure! My debilitation and pain came right back so I'm on 10mg prednisone again after weaning down from 20. It's all so mysterious.

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1 reply
Teri | @tsc | Jun 22, 2023
In reply to @ripley "For those of you diagnosed with PMR, did all of you have severe joint pain in..." + (show)
@ripley

For those of you diagnosed with PMR, did all of you have severe joint pain in the shoulders, arms and hips that you had trouble getting out of bed or from a chair, and raising your hands above your head? I've been diagnosed with Fibromyalgia, which has similar symptoms to PMR. Mornings I have terrible neck, shoulder and arm pain and sometimes leg pains, but I don't have any of the difficulties mentioned above, although my shoulder joints are often painful. I'm trying to figure out if it might be PMR instead. Last year I had blood tests looking for inflammation markers, SED and C Reactive Protein and all were normal. I welcome any comments.

Jump to this post

Hi @ripley, I had PMR undiagnosed for a year because I thought it was fibromyalgia. I had incredible pain and stiffness throughout my body from the neck down, everywhere, which eased up a little in the evenings. I had blood tests about four months after symptoms started, but the inflammation markers were not elevated significantly so I wasn't diagnosed. Symptoms stayed as they were, then changed. I was anemic, got shingles, lost about 15 pounds, had an incredibly stiff neck and short stabbing pains in my head. Blood tests about a year after the first symptoms started showed inflammation markers were very high, ESR and CRP. I had Giant Cell Arteritis and was put on 40 mg prednisone to start, tapering down every two weeks. Have been off prednisone for about eight months now.
Maybe it's time to get blood tests again.
Were you ever prescribed prednisone on a trial basis to see if it relieves your symptoms? PMR can be difficult to diagnose and the relief of symptoms with prednisone can help with the diagnosis.
Take care.

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1 reply
ripley | @ripley | Jun 22, 2023
In reply to @tsc "Hi @ripley, I had PMR undiagnosed for a year because I thought it was fibromyalgia. I..." + (show)
@tsc

Hi @ripley, I had PMR undiagnosed for a year because I thought it was fibromyalgia. I had incredible pain and stiffness throughout my body from the neck down, everywhere, which eased up a little in the evenings. I had blood tests about four months after symptoms started, but the inflammation markers were not elevated significantly so I wasn't diagnosed. Symptoms stayed as they were, then changed. I was anemic, got shingles, lost about 15 pounds, had an incredibly stiff neck and short stabbing pains in my head. Blood tests about a year after the first symptoms started showed inflammation markers were very high, ESR and CRP. I had Giant Cell Arteritis and was put on 40 mg prednisone to start, tapering down every two weeks. Have been off prednisone for about eight months now.
Maybe it's time to get blood tests again.
Were you ever prescribed prednisone on a trial basis to see if it relieves your symptoms? PMR can be difficult to diagnose and the relief of symptoms with prednisone can help with the diagnosis.
Take care.

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The year that your PMR was undiagnosed, did your muscle stiffness prevent you from raising your arms in the mornings or cause difficulty getting out of bed? I have muscle pain but not stiffness that causes limits to movements. Did any Dr diagnose you with Fibro? I will have to re-visit my Dr I guess.

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2 replies
paulagcl | @paulagcl | Jun 22, 2023
In reply to @ripley "The year that your PMR was undiagnosed, did your muscle stiffness prevent you from raising your..." + (show)
@ripley

The year that your PMR was undiagnosed, did your muscle stiffness prevent you from raising your arms in the mornings or cause difficulty getting out of bed? I have muscle pain but not stiffness that causes limits to movements. Did any Dr diagnose you with Fibro? I will have to re-visit my Dr I guess.

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I had muscle pains in both arms when I raised my arms. Now I know that bilateral pain is one of the markers. No doctor suspected PMR until my current primary dr in a new city. He did a blood test but it was normal. Still, he said I could see a rheumatologist if I wanted to, so I did, and by then, a month later, the markers were high.

REPLY
paulagcl | @paulagcl | Jun 22, 2023
In reply to @kberlyhouse "Initially after my first bout of Covid, 4 months later I woke up with terrible hip..." + (show)
@kberlyhouse

Initially after my first bout of Covid, 4 months later I woke up with terrible hip pain and debilitating weakness, and after I got Covid a year later for the second time (6 months after 2 Pfizer covid vaccines!) I couldn't raise my arms and my shoulder/collar bone pain was severe. After a year of testing (my CRP and SED rates were initally totally normal), I was finally diagnosed with PMR. My CRP and SED were high at the beginning of this year, and I am still on prednisone and waiting to start Kevzara next week, but when I weaned down to 1 mg prednisone and then 0 last month to see where I was with the condition, my CRP/SED was again normal. Go figure! My debilitation and pain came right back so I'm on 10mg prednisone again after weaning down from 20. It's all so mysterious.

Jump to this post

I started Kevzara a month ago. still on prednisone with it but the hope is that the Kev will help to wean me off the prednisone. This is a new diagnosis, the first serious condition I've had in my entire life (I am 85) so I realize that's lucky, but it's still a shock and depressing.

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