How were you diagnosed with PMR ? How are you currently managing?

Posted by ajf1950 @ajf1950, 6 days ago

I have been dealing with PMR going on4 months now, how is it diagnosed and what are the treatments

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

Profile picture for lhk2 @lhk2

In February of this year I started having pain in my one leg, which I put down as a strain caused by pickleball. After a few weeks the other leg started hurting and within a few weeks I was having pain in my hips radiating down my hamstrings. I went to my chiropractor and after one treatment nothing changed. When I went to see him again he referred me to an ortho doctor he knew well that specialized in spines. He ordered blood tests which came back positive for PMR indicators. He put me on 20mg of Prednisone and I had almost immedate relief. My primary Doc referred me to a Rheumatologist in his practice who has had me tapering from 20mg, currently at 7mg. My last blood work a couple weeks ago showed my inflammatory markers were normal and she reduced my tapering from 1mg every month to 1mg every three weeks.

My question to her was if my inflamation markers remain normal through the end of the taper will I be in remission? After following this thread and hearing everyone elses stories it seems impossible to be in remission within a year. Thoughts?

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@lhk2
If possible (if you would like to), please share what specific "blood tests" were ordered for you, what exactly "PMR indicators" are, and what are you referring to as "inflammation markers"? I am putting quotes around these terms not to question them, but to ask that you can give me what exactly they are. I'm new to diagnosis, and keep reading that PMR isn't diagnosable on antigen tests (for lupus, RA, Sjogrens, etc.). So I am wondering if I should ask for additional blood work that I don't know about (beyond the usual CBC and antigen blood work). I know about CRP and sed rates on blood work, so they can be excluded. Many thanks!

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Profile picture for bindie @bindie

@lhk2
If possible (if you would like to), please share what specific "blood tests" were ordered for you, what exactly "PMR indicators" are, and what are you referring to as "inflammation markers"? I am putting quotes around these terms not to question them, but to ask that you can give me what exactly they are. I'm new to diagnosis, and keep reading that PMR isn't diagnosable on antigen tests (for lupus, RA, Sjogrens, etc.). So I am wondering if I should ask for additional blood work that I don't know about (beyond the usual CBC and antigen blood work). I know about CRP and sed rates on blood work, so they can be excluded. Many thanks!

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@bindie
You are asking some very good questions. I don't really know so the following is only my opinion for whatever it is worth.
-----------------
Some of the "PMR indicators" are the tests that confirm that it isn't something else-- like RA for example. This is known as "diagnosis by exclusion" even though it is impossible to exclude everything else. There might be hundreds of other things to exclude.

As time goes by, "something else" might reveal itself and then the real diagnosis is known. When that happens, the diagnosis is changed and that is the best way to know that you don't have PMR.

However, you can still have PMR. You might have PMR in addition to something else.
----------------------------
Most doctors don't have time to exclude everything else. I think they listen to the symptoms you describe and observe how well you can move. Then they order an ESR and CRP level. When these labs are elevated they prescribe low dose Prednisone. Even if ESR and CRP aren't elevated, they might try Prednisone anyway. When all this is done they wait a couple of days for patients toe report that a "miracle" happened. Voila... it must be PMR as long as you are "old enough" to have PMR.
---------------------------
There is a "Classification Criteria for Polymyalgia Rheumatica" but it isn't very interesting. It was written by the American College of Rheumatology (ACR) in 2012 and is due for an update. The European counterpart is called EULAR. They collaborated with the ACR in 2012.

EULAR published an update in 2025 but nothing much changed about how to diagnose PMR. It might have included some imaging.

EULAR might have changed a few things about how to treat PMR/GCA. I think they mention some biologics for example.

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Profile picture for Mike @dadcue

@bindie
You are asking some very good questions. I don't really know so the following is only my opinion for whatever it is worth.
-----------------
Some of the "PMR indicators" are the tests that confirm that it isn't something else-- like RA for example. This is known as "diagnosis by exclusion" even though it is impossible to exclude everything else. There might be hundreds of other things to exclude.

As time goes by, "something else" might reveal itself and then the real diagnosis is known. When that happens, the diagnosis is changed and that is the best way to know that you don't have PMR.

However, you can still have PMR. You might have PMR in addition to something else.
----------------------------
Most doctors don't have time to exclude everything else. I think they listen to the symptoms you describe and observe how well you can move. Then they order an ESR and CRP level. When these labs are elevated they prescribe low dose Prednisone. Even if ESR and CRP aren't elevated, they might try Prednisone anyway. When all this is done they wait a couple of days for patients toe report that a "miracle" happened. Voila... it must be PMR as long as you are "old enough" to have PMR.
---------------------------
There is a "Classification Criteria for Polymyalgia Rheumatica" but it isn't very interesting. It was written by the American College of Rheumatology (ACR) in 2012 and is due for an update. The European counterpart is called EULAR. They collaborated with the ACR in 2012.

EULAR published an update in 2025 but nothing much changed about how to diagnose PMR. It might have included some imaging.

EULAR might have changed a few things about how to treat PMR/GCA. I think they mention some biologics for example.

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@dadcue
Your comment on markers "confirming it's not something else" is brilliant. Helps make the whole picture of PMR come together even more for me. Thanks!

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Profile picture for bindie @bindie

@dadcue
Your comment on markers "confirming it's not something else" is brilliant. Helps make the whole picture of PMR come together even more for me. Thanks!

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@bindie

Just so you know ... those are all my words ... from my head. I would not say it was brilliant.
-------------------------
I sometimes run it by artificial intelligence to see what it thinks. AI was happy with it too!
😄

"You have actually described the real-world clinical diagnosis of Polymyalgia Rheumatica (PMR) with incredible accuracy. While it might feel like a simplified or rushed shortcut, this process closely aligns with official international diagnostic criteria.
Because there is no definitive biopsy or definitive single antibody test for PMR, the diagnosis relies heavily on a combination of specific clinical findings and how the body responds to treatment."

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Profile picture for bindie @bindie

@lhk2
If possible (if you would like to), please share what specific "blood tests" were ordered for you, what exactly "PMR indicators" are, and what are you referring to as "inflammation markers"? I am putting quotes around these terms not to question them, but to ask that you can give me what exactly they are. I'm new to diagnosis, and keep reading that PMR isn't diagnosable on antigen tests (for lupus, RA, Sjogrens, etc.). So I am wondering if I should ask for additional blood work that I don't know about (beyond the usual CBC and antigen blood work). I know about CRP and sed rates on blood work, so they can be excluded. Many thanks!

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@bindie here are the tests my Dr. ran. besides these I had a full CT scan and chest x-ray. You might have to google each to see what they are checking.

1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6
(Note: One of the interleukin tests Medicare would not pay for)

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there is hope for this dark journey we are on. I was diagnosed early January 2026, after having increasing pain during december. CRP and sed tests were off the scale. I refused pred until March 20 when I could no longer walk to the bedroom. During January I completely changed my diet (no cheese, no wine) and fasted 6 days. Then Jan 28 I fasted 31 days. Figured at least the weight gain, BP and cholesterol side effects would be less. I was on pred 30MG start which relieved my pain in like an hour, that was nuts. On a ski trip with 18 and next day I could ski. Canadian doc said 30 week, 25, 20, 15, 10 each week thereafter, then see me again. All pain gone. I continued tapering each week to 5, 2.5, then 1.25. Then pain came back and back up to 5 for couple days then 2.5. Follow up visit CRP was 5 (down from 22) In June saw a doc in Europe and did complete bloodwork. The doc said Dutch PMR protocol when bloodtests are in normal range, taper to 6 days, then 5, 4, 3 and so on each week. I feel that the fast gave my body a fighting chance (and I needed to lose 10LB and get my BP/cholesterol down).
Off pred now since late August (1 single day 2.5 1st week Sept) All this was background;-) How am I doing. Back in gym, core/pilates and yoga/stretching. For last 4-5 months working out with exercise band, think 2-3LB weights. Right now pain level 1-2. Day after working out level3 . It seems that without prednisone the pain is very, very manageable. But my muscles seem weak. It takes a lot of work, and strength is elusive. Like pulling up a tighter workout bra, I need help. And now, which apparently comes on months after tapering of pred, diverticulitis. For diverticulitis, recommended 24-48 hours clear liquids, which I did for 60 hours, pain away, back 24 hours later.
In short though, the pain at 1-2 is fine and off the drugs. BP way down. Going for a full blood workup in 2 weeks. Hope this helps. This thing can really mess physically as well as mentally/confidence.

REPLY
Profile picture for bindie @bindie

@lhk2
If possible (if you would like to), please share what specific "blood tests" were ordered for you, what exactly "PMR indicators" are, and what are you referring to as "inflammation markers"? I am putting quotes around these terms not to question them, but to ask that you can give me what exactly they are. I'm new to diagnosis, and keep reading that PMR isn't diagnosable on antigen tests (for lupus, RA, Sjogrens, etc.). So I am wondering if I should ask for additional blood work that I don't know about (beyond the usual CBC and antigen blood work). I know about CRP and sed rates on blood work, so they can be excluded. Many thanks!

Jump to this post

@bindie I wish I could reply with specific inflamation markers and PMR indicators however my Dr. just refers to them generically and not specifically. However the blood tests she ordered specifically targeted SED Rate (iSED) and Erythrocyte. This test was from 9/22 and I don't have the test results that my diagnosis was based on for comparison. I don't know how much that helps as I am relatively new to this diagnosis too.

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Profile picture for lhk2 @lhk2

@bindie I wish I could reply with specific inflamation markers and PMR indicators however my Dr. just refers to them generically and not specifically. However the blood tests she ordered specifically targeted SED Rate (iSED) and Erythrocyte. This test was from 9/22 and I don't have the test results that my diagnosis was based on for comparison. I don't know how much that helps as I am relatively new to this diagnosis too.

Jump to this post

@lhk2

The test you are referring to is the Erythrocyte Sedimentation Rate (ESR). It is one of the "inflammation markers."
https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

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How was I diagnosed?
Here's a link to the recently revised UK guidelines for PMR which starts with diagnosis https://www.rheumatology.org.uk/guidelines. Do have a look. There's a variety of information at different levels. According to this diagnosis is based on clinical features, inflammatory markers, +/- imaging. I had all the stiffness and pain and raised CRP. I was put on 15mg Prednisolone which brought me back to 'fairly' normal so diagnosis confirmed. No need for imaging. I think one of the issues is there are no clear 'biomarkers' for PMR. For example, a blood test for something known as a biomarker which can be straightforwardly measured and which changes if you intervene with, for example, steroids. PMR doesn't work like that.

How am I managing? I'm now tapering down at 0.5 mg every two weeks. The main issue seems to be getting to the bottom of what caused the inflammation/autoimmune problems which led to the PMR - and getting that sorted. I work with a Nutritionist/Clinical Pharmacist - as well as my GP - to understand how to improve my HPA Axis and Cortisol metabolism which seems to be the key to get right as one moves off steroids which are artificially managing one's metabolism and moves back to my own body managing my metabolism.

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I have had PMR twice. Both times the pain started in the hips and shoulders, and after an examination by a rheumatologist, they put me on a prednisone treatment which cleared it up immediately. And with the blood test markers, they make the diagnosis of PMR. The first time it took me one year to tape her off the prednisone and this time I’m down to 2 mg in January will be the one year mark. Hope that helps.

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