Diagonsis of PMR is not exactly nailed down

Posted by lowell77 @lowell77, Sep 7, 2023

I was tentatively diagnosed with PMR very recently. Got 20 mg of prednisone per day to start for a week, numbers came down slightly, then now on 25 mgs for another two weeks or so. However, my symptoms have not subsided much, plus my shoulder pain is mostly in one shoulder rather than both, plus it came on fairly suddenly and not slowly like it usually does -- and now the docs are wondering if there is something more going on. Lyme disease and RA ruled out by testing. Jealous of many of the people on this thread who get relief very early when they start prednisone. Nobody wants high doses for long periods, I know. Has anybody else had this kind of experience? Hoping it is not something more complicated than PMR.

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

Hello @lowell77, Welcome to Connect. There are quite a few conditions that mimic PMR. Here's more information:
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

You mentioned that you were started on 20 mg dose of prednisone and then went to 25 but your symptoms have not subsided much. That seems like a red flag that it might not be PMR. I was started at 20 mg for both my occurrences of PMR and my symptoms went away within an hour or so of taking the prednisone. My symptoms were pretty much pain all over the shoulder, hips, legs and feet and I couldn't walk.

Do you mind sharing a little more about your symptoms and how they started?

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@johnbishop

Hello @lowell77, Welcome to Connect. There are quite a few conditions that mimic PMR. Here's more information:
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

You mentioned that you were started on 20 mg dose of prednisone and then went to 25 but your symptoms have not subsided much. That seems like a red flag that it might not be PMR. I was started at 20 mg for both my occurrences of PMR and my symptoms went away within an hour or so of taking the prednisone. My symptoms were pretty much pain all over the shoulder, hips, legs and feet and I couldn't walk.

Do you mind sharing a little more about your symptoms and how they started?

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Thank you! Well, about a month ago, some lower back pain, then to hips, then to shoulder over a couple of days. Never had back pain before. Alleve did not do much, so went to my very excellent PA who suggested PMR as a possible and started testing and the predisone.
In reading what you provided, now I am wondering if my history might have some factors. Both my father and a brother died of MS in their 60s. Brother died of brain tumor, mother died of colon cancer and sister still living has fought it.
I had a severe episode of gout in one toe 40 or so years ago and have been taking a daily alopurinol ever since with no reoccurance. Also take a small thyroid pill daily. Diagnosed with ET a few years ago and take chemo daily for that to keep platelets down. Discovered slight heart murmur four years ago and get an ultra-sound every two years now to keep track of stenosis in one valve flap. Have had some occasional issues with vertigo over past few years -- ENT guy determined was not ear related. It has subsided some in recent months. Never had cholesteral or high blood pressure issues, even though 40 pounds overweight.
Both gout and cancer mentioned in your material. Wondering about that.

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@lowell77

Thank you! Well, about a month ago, some lower back pain, then to hips, then to shoulder over a couple of days. Never had back pain before. Alleve did not do much, so went to my very excellent PA who suggested PMR as a possible and started testing and the predisone.
In reading what you provided, now I am wondering if my history might have some factors. Both my father and a brother died of MS in their 60s. Brother died of brain tumor, mother died of colon cancer and sister still living has fought it.
I had a severe episode of gout in one toe 40 or so years ago and have been taking a daily alopurinol ever since with no reoccurance. Also take a small thyroid pill daily. Diagnosed with ET a few years ago and take chemo daily for that to keep platelets down. Discovered slight heart murmur four years ago and get an ultra-sound every two years now to keep track of stenosis in one valve flap. Have had some occasional issues with vertigo over past few years -- ENT guy determined was not ear related. It has subsided some in recent months. Never had cholesteral or high blood pressure issues, even though 40 pounds overweight.
Both gout and cancer mentioned in your material. Wondering about that.

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Also...forgot....knee replaced in 2014 and told had arthritis there.

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@lowell77

Also...forgot....knee replaced in 2014 and told had arthritis there.

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I'm not sure if you saw them but the article did have a great list of questions to ask your doctor related to your symptoms and whether or not it's PMR.

- Could these symptoms be due to another condition?
- What tests will you perform to find out the cause?
- Do I need to do anything to prepare for the tests?
- How reliable are the test results?
- If I have PMR, what are the best treatments?
- Are there lifestyle changes I need to make to relieve the symptoms?

It sounds like you have a great PA, have you thought about seeking a second opinion with a rheumatologist?

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One thing with PMR is, it doesn't hurry. My symptoms were with me for a couple of decades at one strength or another but they had no way of diagnosing it, or understanding it. One day I was in so much pain I could hardly walk but it eased off as the day progressed. After a few days of that my husband insisted I went to the doctor. He referred me too a reumatologist and it's been good sailing ever since. Now, after 4 years of prednisone I am getting noticeable better. I don't think it's gone but the flare up has died down, thank goodness.

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Will get hooked with a rheumatologist soon I think.
FYI: Interesting development today: Taking 25 mgs of prednisone in the morning, but last night accidently took an extra dose -- so that was 50 mgs for the day. This morning, felt like I could fight Mohammed Ali. Very little shoulder pain and moving great. Of course I skipped the regular morning dose this morning and will get back on track tomorrow, and the steroid high may crash today. But wow! Pharmacist friend said a "steroid burst" might do that. Will see what experts think.

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@lowell77

Will get hooked with a rheumatologist soon I think.
FYI: Interesting development today: Taking 25 mgs of prednisone in the morning, but last night accidently took an extra dose -- so that was 50 mgs for the day. This morning, felt like I could fight Mohammed Ali. Very little shoulder pain and moving great. Of course I skipped the regular morning dose this morning and will get back on track tomorrow, and the steroid high may crash today. But wow! Pharmacist friend said a "steroid burst" might do that. Will see what experts think.

Jump to this post

Let us know how skipping the next dose worked out, I don’t think I would have skipped it.

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Well, as I expected, after skipping the morning prenisone dose, the shoulder pain arrived earlier than usual and I had some discomfort sleeping the next night. You might be right in that I should not have skipped, but I'm cautious about prednisone. Every doctor I have ever talked to is pretty careful getting the dose right and then tapering off it properly. Have not gotten that far into the treatment (or diagnosis for that matter) to have an exit plan yet, but I know it will be months of tapering. Thanks for the interest.

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@lowell77 this info is from uptodate.com-- --BTW I could not rasie my arms in the morning to make a pony tail -- the descriptions are spot -on for me. you should see a rheumatologist ! where do you live ?- getting an appointment quickly may not be easy --

Clinical features — Polymyalgia rheumatica (PMR) is characterized by symmetrical aching and stiffness about the shoulders, hip girdle, neck, and torso, worst on arising in the morning, of recent onset, in a patient over the age of 50 (figure 1).

Onset – It is typically a recent, discrete change in musculoskeletal symptoms that prompts the patient with PMR to seek medical attention. The onset can be abrupt, sometimes startlingly so, seeming to occur almost overnight. A story of longstanding stiffness and aching does not suggest a diagnosis of PMR.

Pattern of symptoms – Bilateral shoulder pain is the presenting manifestation in nearly all patients (70 to 95 percent), while the neck and the hip girdle are involved in approximately 70 and 50 percent of patients, respectively. They can initially be unilateral but soon become symmetrical. Bilateral achiness about the upper arms with limitation of active shoulder abduction is particularly common and often commands the clinical presentation. Pelvic girdle symptoms manifest as pains about the groin and lateral aspects of the hips and are frequently reported as radiating to the posterior aspects of the thighs. As described above, the proximally distributed aching and stiffness represent referred symptoms from the joints and periarticular structures of the shoulders and hips. (See 'Pathogenesis and pathophysiology' above.)

Distal symptoms, generally mild, accompany the characteristic proximal symptomatology in approximately one-half of patients, most commonly at the wrists and metacarpophalangeal joints, and occasionally at the knees, but not the feet and ankles. Carpal tunnel syndromes, due to wrist involvement, can be found in 10 to 15 percent of patients [26]. Occasionally, distal symptoms at the hands and wrists are of explosive onset and exuberant extent. (See 'Differential diagnosis' below.)

Functional limitations – Proximal stiffness can result in difficulties with activities of daily living, such as pulling on a shirt or coat, hooking a bra in the back, donning socks and shoes, or transferring from the supine or seated position to standing. The intensity of the gelling phenomenon, coupled with proximal stiffness, can be such that patients may require assistance with morning dressing.

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Thanks for the information. My condition has greatly improved in the last two days, simply by splitting my morning dose in half and taking the other half in the evening. I give this support group credit because some of you have written about this and my doctor said to go ahead and try it. I am hoping this simple technique continues to give me relief so I can start tapering down the road. I was shocked to learn that the soonest I can see a rheumatologist in our area is 4 months off. I'm now on the waiting list hoping for a sooner cancellation.

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