1. < Polymyalgia Rheumatica (PMR)

Rheumatoid Drs

Posted by bren0718 @bren0718, Mar 8 10:08am

I was diagnosed with PMR in August of 2023. My family doctor has been all I have seen about my disease. I was ok with her until I came on this support group and now realize I dont know much about the disease itself or about tapering off of the prednisone. In December I was diagnosed with severe osteoporosis. My Dr told me to start tapering off quicker . I have gone from 20 mg to 7.5 . She never told me at what rate to taper or that if I was having a hard time I could go back up for a bit and then try again. I think I need to see a specialist after seeing all your comments. I have only had blood work done the one time and don’t understand the numbers that people are posting. I feel I have done myself a disservice by not seeing a specialist. Do any of you just have your family physician treat you ?

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

pb50 | @pb50 | Mar 10 4:08pm
In reply to @bren0718 "I live in Lynchburg Va. I will have to travel to a larger city to get..." + (show)
@bren0718

I live in Lynchburg Va. I will have to travel to a larger city to get into a specialist. Still it may take up to 6 months to be seen.

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Is this doc an option?

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aussiedogmom | @aussiedogmom | Mar 10 6:21pm
In reply to @dadcue "What you say is true. However, there is nothing that prevents a person with RA from..." + (show)
@dadcue

What you say is true. However, there is nothing that prevents a person with RA from developing PMR. The same is true for people with PMR who also have osteoarthritis. You can have any type of arthritis and still have PMR. It doesn't have to be one or the other.

I was diagnosed with spondyloarthritis at the age of 32. My prior diagnosis did create some confusion when I developed PMR at the age of 52. My rheumatologist eventually just said it was "unfortunate" but I had both.

In my case, PMR exacerbated my arthritis to the extent that I didn't know what was causing what --- it would hurt everywhere. My rheumatolgist called it "systemic inflammation." Another phrase used was a "full range of rheumatology conditions." I personally thought it was a "hybrid of things."

All I knew --- whatever "it" was --- the pain wouldn't stop unless I took a lot of Prednisone for a very long time.

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Oh yes. Your points are important. Thank you for providing more clarification.

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nancy53 | @nancy53 | Mar 11 1:25pm

If you can see a Rheumatologist, go. Their knowledge is more specific to PMR as it is an autoimmune disease. They have more experience with steroids. My PA was reluctant to prescribe Prednisone, even when I told him it was keeping me relatively PAIN free and that I needed it. Once on 20mg a day, I felt almost well again. In 2 months, under the Rheumatologist's direction, I have tapered to 15mg. I see him tomorrow and plan on asking about tapering more.

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nancy53 | @nancy53 | Mar 11 1:27pm
In reply to @aussiedogmom "RA is quite a different disease. My rheum was telling me that PMR is not classified..." + (show)
@aussiedogmom

RA is quite a different disease. My rheum was telling me that PMR is not classified as a arthritis. The PMR disease process is not happening on the surfaces of our bones at the joints, creating permanent damage. PMR happens in connective tissues, particularly where connective tissues join muscles and bones, and typically does not lead to permanent bone damage. In fact, it may not lead to any permanent damage at all as it faces and wanes over the natural course of the disease.

Just wanted to point that out.

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Same info from a doctor in England, so happy to know that there is no permanent damage.

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nancy53 | @nancy53 | Mar 11 1:33pm
In reply to @nyxygirl "Hello @bren0718 do you live in USA ? I ask because you us the term family..." + (show)
@nyxygirl

Hello @bren0718 do you live in USA ? I ask because you us the term family doctor, not PCP. to learn about PMR i suggest this site : https://www.pmrandil6.com/

Look at all the slides , under resources tab scroll down to the two videos. In UK , PMR is mostly managed by Primary care physicians- so not unusual - my experience was that my PCP would NOT increase my prednisone dose above 15mg, which is what i needed for 100% relief of morning pain and stiffness. I was able to see a rheumatologist in 1 month in Boston -area.

BTW @pb50 it is well recognized the PMR is an auto-inflammatory disease - not auto-immune.

the attached papers helped me understand PMR -

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https://www.goodrx.com/health-topic/autoimmune/autoimmune-vs-autoinflammatory-disease

Thank you for the info on auto-inflammatory vs. auto-immune. I did more research.

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2 replies
nyxygirl | @nyxygirl | Mar 11 2:34pm
In reply to @nancy53 "https://www.goodrx.com/health-topic/autoimmune/autoimmune-vs-autoinflammatory-disease Thank you for the info on auto-inflammatory vs. auto-immune. I did more research." + (show)
@nancy53
https://www.goodrx.com/health-topic/autoimmune/autoimmune-vs-autoinflammatory-disease

Thank you for the info on auto-inflammatory vs. auto-immune. I did more research.

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Here is a table that addresses PMR in the spectrum of auto-inflammtory vs autoimmune . I will find the actual reference. -

--Floris A, Piga M, Cauli A, Salvarani C, Mathieu A. Polymyalgia rheumatica: an autoinflammatory disorder? RMD Open. 2018 Jun 4;4(1):e000694. doi: 10.1136/rmdopen-2018-000694. PMID: 29955386; PMCID: PMC6018871.
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2 replies
DadCue | @dadcue | Mar 11 3:20pm
In reply to @nyxygirl "Here is a table that addresses PMR in the spectrum of auto-inflammtory vs autoimmune . I..." + (show)
@nyxygirl

Here is a table that addresses PMR in the spectrum of auto-inflammtory vs autoimmune . I will find the actual reference. -

--Floris A, Piga M, Cauli A, Salvarani C, Mathieu A. Polymyalgia rheumatica: an autoinflammatory disorder? RMD Open. 2018 Jun 4;4(1):e000694. doi: 10.1136/rmdopen-2018-000694. PMID: 29955386; PMCID: PMC6018871.

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I don't think they really know what PMR is. Perhaps a combination of autoinflammatory and autoimmune.

https://pubmed.ncbi.nlm.nih.gov/34798314/#:~:text=Background%20and%20aim%3A%20Polymyalgia%20rheumatica,partially%20understood%20immune%2Dmediated%20mechanisms.

My rheumatologist made a comment to me once that made me curious. I'm not sure what disorder he was referring to because I have several. We were discussing "immune system memory." His comment was, "my immune system was unlikely to forget what it has been attacking for so many years."

I googled "immune system memory and autoimmune disorders." I found the following:

"In an autoimmune response, when memory cells are formed against the “self,” they help mount a highly efficient pathogenic response against the body's own tissues. These memory cells, by virtue of being long lived also become very difficult to eliminate."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/#:~:text=In%20an%20autoimmune%20response%2C%20when,become%20very%20difficult%20to%20eliminate.

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PMR is supposed to "burn itself out" in a year or two which suggests more of an innate immune response. That clearly didn't happen in my case. The longer PMR persists, maybe it becomes an adaptive immune response.

I'm just glad an IL-6 inhibitor seems to stop my PMR symptoms. Unfortunately, my symptoms have returned whenever Actemra was stopped. This might explain why my rheumatologist has no plan to stop Actemra anytime soon. During our discussion about when to stop Actemra was when he made the "immune system memory" comment.

People with RA and other types of inflammatory arthritis don't ever have their biologics stopped unless the biologic stops working. That is usually when their immune systems form antibodies against the biologic.

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1 reply
DadCue | @dadcue | Mar 11 4:00pm
In reply to @nyxygirl "Here is a table that addresses PMR in the spectrum of auto-inflammtory vs autoimmune . I..." + (show)
@nyxygirl

Here is a table that addresses PMR in the spectrum of auto-inflammtory vs autoimmune . I will find the actual reference. -

--Floris A, Piga M, Cauli A, Salvarani C, Mathieu A. Polymyalgia rheumatica: an autoinflammatory disorder? RMD Open. 2018 Jun 4;4(1):e000694. doi: 10.1136/rmdopen-2018-000694. PMID: 29955386; PMCID: PMC6018871.

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Is this the reference you are referring to?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6018871/

"In summary, despite the incomplete knowledge of PMR pathophysiology and the lack of validate discriminative criteria for polygenic autoinflammatory disorders (AIDs), current evidence suggests that PMR does not easily fit into any of the two pure ends in the spectrum of the immune-mediated disorders, but a greater affinity for AIDs seems to emerge."

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nancy53 | @nancy53 | Mar 11 4:42pm

So much info out there!

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