1. < Polymyalgia Rheumatica (PMR)

PMR diagnosis without markers in blood work

Posted by gjc111 @gjc111, Feb 16, 2022

I have been dealing with hip, shoulder,neck and back pain besides other joints for a few years now. Have had injuries ruled out and have received cortisone shots in both hips and shoulders. My latest fire up has my range of motion so bad I can barely lift my arms and am having a hard time getting up from sitting. My orthopedic decided I had PMR but blood work showed no markers. Got him to put mo on prednisone. It was a low dose taper for 6 days which started helping within a few. Once that was over I regressed. I am having hard time getting GP to see pat lack of proof in bloodwork. I have researched this and found articles saying it doesn't always show up in bloodeork. Has anyone else experienced this. I cannot take pain much longer, I need help

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 16, 2022

Hello @gjc111, Welcome to Connect. I have no medical training or background but from everything I've read on PMR it can be difficult to diagnose.
Also, there are a lot of conditions that mimic PMR which also complicates a diagnosis. --- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Here are a few references on the topic of PMR with no inflammatory markers:
-- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/
-- Polymyalgia Rheumatica with Normal Inflammatory Markers: https://www.amjmed.com/article/S0002-9343(18)30112-8/fulltext

Have you thought about getting a second opinion or possible seeing a rheumatologist who might be more familiar with diagnosing PMR?

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gjc111 | @gjc111 | Feb 16, 2022

.Thank you for reaching out and the info. I have contacted a Rheumatologist at Brigham in Boston. I am in Maine ccx and Drs are telling me it would be unusual not to have markers,they refuse to think it's possible even though I sent them research on normal blood work. I will read the info you sent. I really don't care what they label it. I just need them to treat it,the pain is unbearable and I have dealt with alot of pain in my life. Thank you again

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milld835 | @milld835 | Feb 17, 2022

Sounds very familiar to me. But my blood markers were extremely high. Maybe try a different GP, because my own GP wouldn't even consider RA until I pressed for bloodwork. It was PMR. Took 5 months of what you're going thru right now to get a diagnosis. Prednisone 20 mg since Jan. 4/22 has alleviated the pain completely and I now have my life back.

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gjc111 | @gjc111 | Feb 17, 2022

Glad to hear you're doing well and thanks for letting me know there can be hope

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linda7 | @linda7 | Feb 17, 2022

My internal medicine doctor thought spine problems in my neck and back were causing my symptoms. She did run the ESR and CRP tests at my request and they were normal ( CRP 23). Symptoms worsened over 3 or 4 months and I went back in to see her. I had done my researched and all my symptoms matched PMR. She agreed with me and ran the tests again. CRP was now 35, a little high, but she was not comfortable putting me on prednisone, referred me to a rheumatologist. I couldn't get an appointment for 4 months, but then began running a fever and they got me in earlier. The rheumatologist listened to all my symptoms and said my lab numbers weren't particularly high but he treats patients, not labs, and put me on prednisone which brought instant relief. He said that not everyone has high lab numbers. I think it's important to see a rheumatologist.

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2 replies
Teri | @tsc | Feb 17, 2022

I had full blown PMR for three months and my inflammation markers, sed rate and CRP, were only slightly elevated. My PCP did not diagnose PMR. Fast forward nine months later, the symptoms of PMR lessened, but I had a host of strange new symptoms. My inflammation markers were then off the charts. Based on what I've read about PMR, the fact that Prednisone eased your symptoms is a clue and you probably need a course of treatment. I'm with @linda7, it's important to see a Rheumatologist.

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linda7 | @linda7 | Feb 17, 2022
In reply to @linda7 "My internal medicine doctor thought spine problems in my neck and back were causing my symptoms...." + (show)
@linda7

My internal medicine doctor thought spine problems in my neck and back were causing my symptoms. She did run the ESR and CRP tests at my request and they were normal ( CRP 23). Symptoms worsened over 3 or 4 months and I went back in to see her. I had done my researched and all my symptoms matched PMR. She agreed with me and ran the tests again. CRP was now 35, a little high, but she was not comfortable putting me on prednisone, referred me to a rheumatologist. I couldn't get an appointment for 4 months, but then began running a fever and they got me in earlier. The rheumatologist listened to all my symptoms and said my lab numbers weren't particularly high but he treats patients, not labs, and put me on prednisone which brought instant relief. He said that not everyone has high lab numbers. I think it's important to see a rheumatologist.

Jump to this post

I made a mistake in my last post, in case anyone is comparing their lab numbers. It was my ESR that was 23 and then 35. My CRP was normal on every test that I have had.

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tillysam | @tillysam | Feb 18, 2022

I have been suffering with heaviness under my arms, shoulders and neck. The other day I was so miserable that I thought of going to the hospital. After giving this idea much thought I decided that was not the right place to go. I called my doctor ad told him how awful I felt. He said that he thought I was sleep deprived after being on major amounts of steroids for almost 2 years. He prescribed a mild muscle relaxant (not only to help the heaviness in arms, etc.) but also to help me sleep. It worked and I feel a whole lot better. I keep saying that the steroids (not matter how good they are) are breaking down my body and causing all kinds of other problems. I am going to taper down on my Hydrocortisone and hope for the best. Steroid detox is brutal.

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gjc111 | @gjc111 | Feb 18, 2022

I know long term steroids can cause alot of problems but it seems that's the only course of treatment that works for PMR. I hope things get better for you

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gjc111 | @gjc111 | Feb 18, 2022
In reply to @linda7 "My internal medicine doctor thought spine problems in my neck and back were causing my symptoms...." + (show)
@linda7

My internal medicine doctor thought spine problems in my neck and back were causing my symptoms. She did run the ESR and CRP tests at my request and they were normal ( CRP 23). Symptoms worsened over 3 or 4 months and I went back in to see her. I had done my researched and all my symptoms matched PMR. She agreed with me and ran the tests again. CRP was now 35, a little high, but she was not comfortable putting me on prednisone, referred me to a rheumatologist. I couldn't get an appointment for 4 months, but then began running a fever and they got me in earlier. The rheumatologist listened to all my symptoms and said my lab numbers weren't particularly high but he treats patients, not labs, and put me on prednisone which brought instant relief. He said that not everyone has high lab numbers. I think it's important to see a rheumatologist.

Jump to this post

I am trying to get in to see a Rheumatologist but my GP is telling me that no one will diagnose PMR because of my normal numbers even though I have all the symptoms and steroids helped. I am trying to get into see someone in Boston ,hoping they are more advanced in their thinking than here in Maine. Thanks for info

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