Do I really have PMR?

Posted by englerbarb @englerbarb, Aug 31, 2021

Hi. First of all, I’m so glad I’ve found this group! I was diagnosed with PMR 4 days ago and started taking 20mg Prednisone 3 days ago. I already feel so much better and am hoping for no, or few side effects. I’m wondering if any of you who have PMR had normal inflammatory markers at the time of your diagnosis. I found out today from my doctor that mine are normal, so she thinks it might be something other than PMR. Do any of you have experience with this too? I’ll be going back to the lab to get more testing done in another week and a half. If I don’t have PMR, why would the prednisone work for my pain and what else could it be other than PMR?

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

Hello @englerbarb, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I believe it's possible to be diagnosed with PMR and have normal inflammatory markers. I had high inflammatory markers both times when my PMR was active. Fortunately it's in remission now. Here's an article you may find helpful – "Polymyalgia rheumatica is an inflammatory condition that causes a particular pattern of joint pain and stiffness, most commonly in older people. It is a rheumatic disorder closely associated, and often co-existing, with giant cell arteritis. Diagnosis is based on the patient’s clinical features, supported by laboratory investigations." — Polymyalgia rheumatica: Look before you leap: https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

I think you are asking a really good question but it should be directed to your doctor or care team. I can tell you that I could barely walk when I was first diagnosed with PMR and it was with a lot of pain. After meeting with the rheumatologist in the morning and then picking up the prescription of prednisone and taking the 20 mg tablet prior to noon, I was walking fairly normal and without much pain by 2 pm when I had a follow-up appointment with the rheumatologist that same afternoon.

You mentioned you have an appointment in another week or so. You might want to plan your conversation with the doctor so that you can address your questions and concerns which are good ones. Here's a site with some tools to help you plan your conversation – https://patientrevolution.org/visit-tools

Do you mind letting us know how your appointment goes and if you are able to get all of your questions answered?

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Hi englerbarb, Yes, my inflammation markers are pretty much within the normal range, both ESR and CRP. I’ve had PMR off and on for over 20 years. You can see on the graphs of my tests since 2014 only once they are really above the normal range in 2016. (click links below) That was the time the new Rheumatologist at my HMO, didn’t think I had PMR. She took me off my small maintenance dose of prednisone for a few months, I also didn’t take anti-inflammatory meds during that time. The last test in 2020 you can see the markers starting to go up. Again, another new Rheumatologist needed proof that I had PMR. No prednisone or anti-inflammatory meds . But, by the time those tests were taken I was in so much pain that I was walking with a cane and could barely drive the car over for the tests.

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@johnbishop

Hello @englerbarb, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I believe it's possible to be diagnosed with PMR and have normal inflammatory markers. I had high inflammatory markers both times when my PMR was active. Fortunately it's in remission now. Here's an article you may find helpful – "Polymyalgia rheumatica is an inflammatory condition that causes a particular pattern of joint pain and stiffness, most commonly in older people. It is a rheumatic disorder closely associated, and often co-existing, with giant cell arteritis. Diagnosis is based on the patient’s clinical features, supported by laboratory investigations." — Polymyalgia rheumatica: Look before you leap: https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

I think you are asking a really good question but it should be directed to your doctor or care team. I can tell you that I could barely walk when I was first diagnosed with PMR and it was with a lot of pain. After meeting with the rheumatologist in the morning and then picking up the prescription of prednisone and taking the 20 mg tablet prior to noon, I was walking fairly normal and without much pain by 2 pm when I had a follow-up appointment with the rheumatologist that same afternoon.

You mentioned you have an appointment in another week or so. You might want to plan your conversation with the doctor so that you can address your questions and concerns which are good ones. Here's a site with some tools to help you plan your conversation – https://patientrevolution.org/visit-tools

Do you mind letting us know how your appointment goes and if you are able to get all of your questions answered?

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Thank you, John. I am definitely planning to talk to the doctor about the fact that studies have been done, and have found, that it is possible (although rare) to have normal inflammatory markers with PMR. I will also share how my appointment goes.
I do have another question though – in your experience with prednisone, did it completely take away pain from everywhere in your body? Is it supposed to do that? As I said above, I feel much better with less pain for sure, especially in my hips, thighs and lower back but my right shoulder still hurts. Do some areas of pain just take longer for the prednisone to work? Thank you

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@ltta

Hi englerbarb, Yes, my inflammation markers are pretty much within the normal range, both ESR and CRP. I’ve had PMR off and on for over 20 years. You can see on the graphs of my tests since 2014 only once they are really above the normal range in 2016. (click links below) That was the time the new Rheumatologist at my HMO, didn’t think I had PMR. She took me off my small maintenance dose of prednisone for a few months, I also didn’t take anti-inflammatory meds during that time. The last test in 2020 you can see the markers starting to go up. Again, another new Rheumatologist needed proof that I had PMR. No prednisone or anti-inflammatory meds . But, by the time those tests were taken I was in so much pain that I was walking with a cane and could barely drive the car over for the tests.

Jump to this post

Thank you, Itta. I hope you are feeling better!

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@englerbarb

Thank you, John. I am definitely planning to talk to the doctor about the fact that studies have been done, and have found, that it is possible (although rare) to have normal inflammatory markers with PMR. I will also share how my appointment goes.
I do have another question though – in your experience with prednisone, did it completely take away pain from everywhere in your body? Is it supposed to do that? As I said above, I feel much better with less pain for sure, especially in my hips, thighs and lower back but my right shoulder still hurts. Do some areas of pain just take longer for the prednisone to work? Thank you

Jump to this post

I still had some minor aches and pain when I first got up but it would get better after a little moving around. My rheumatologist had me keep a daily log of my pain on a scale of 1 to 10 and the dosage I was at. This was really helpful as I started tapering off of the prednisone. There is another discussion you might find helpful when you start tapering off of prednisone. I think some sort of daily exercise is a must. Nothing strenuous but stretching, walking, etc. really helps along with some diet changes for more anti-inflammatory foods.

Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/

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I am serum negative rheumatoid arthritis so such negative tests are possible. I also am symptomatic for PMR so we just treat the both with medrol. Mornings are difficult and to be endured but the middle of day to early evening good, then it starts ramping up at bed time which I attribute to activity level during the day and the medrol wearing off.

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The second time I was diagnosed with PMR, the inflation markers didn’t show elevation for a month. So, for 1 month I was in pain, barely able to use my arms, hands, and shoulders. My dr then did a second test of CRP and ESR – both considerably elevated.

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Hi there. I had normal inflammation markers that delayed diagnosis. The fact that prednisone helped within a day or two helped convince my doctor that it was (and is) PMR. I have read research stating that 15% or more of patients with PMR have normal markers so it's not that unusual.

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Hi, I had horrible pain and stiffness in my whole body from the neck down for four months, with slightly elevated inflammatory markers that my Primary Care Physician did not follow up on. That horrible pain receded after 9 months, but I developed other troubling symptoms. Long story short, one year after the onset of the first symptoms, I was diagnosed with Giant Cell Arteritis, the companion disorder of PMR. My sed rate was 120. If there is a dramatic clinical response to symptoms of PMR, within 1-3 days after steroid institution, even without the inflammatory markers, it supports the diagnosis. (Cecil and Goldman's Textbook of Medicine). The symptoms are indicators of these disorders, sometimes more than the lab test results. Prednisone took away 98% of my pain, but I have osteoarthritis in the right shoulder, which is still painful and for which I am getting physical therapy.

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Hi @aspine, Thanks again for the private messages. I do think posting your experiences in discussions also helps other members who may have the same experiences or similar questions. I'm glad to hear that your bloodwork has come back into the normal ranges. I had never really thought about the possibility of anyone having a "mild" case of PMR but that is actually a very good question. Here's some information from the Arthritis Foundation that mentions maybe why your rheumatologist is talking about using other treatments for PMR.

"They are the mainstay of PMR treatment. The dosage for PMR is low and symptoms will improve quickly with treatment. The dosage will be lowered further once symptoms improve. Occasionally, mild cases of PMR are treated with nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, to ease symptoms." — Polymyalgia Rheumatica – Arthritis Foundation: https://www.arthritis.org/diseases/polymyalgia-rheumatica#:~:text=They%20are%20the%20mainstay%20of,and%20naproxen%2C%20to%20ease%20symptoms.

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with normal sed rate and crp i doubt you have pmr unless you were already in remission at the time of the tests..also there are other inflammatory and non inflammatory conditions where you would feel better with steroids

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