1. < Polymyalgia Rheumatica (PMR)

Doctors' confusion over diagnosis: Questions they should ask

Posted by lmz @lmz, May 30 5:22pm

Since a rheumatologist diagnosed my PMR more than two and a half years ago, two other doctors have second-guessed him. Because PMR is a disease of the old and worn, and because some of us lack blood markers, doctors seem to have difficulty seeing the disease for what it is, and not arthritis or a pinched nerve or something else. It seems to me that PMR is distinctive, and that doctors would recognize it easily if they would only ask the right questions. Following are questions I would recommend. What do you think?

How would you describe the pain and stiffness you feel?
How did the pain begin?
Where do you hurt?
Where do you feel stiff?
Are certain areas of your body tender to the touch?
At what time(s) of day do you experience the most pain and stiffness?
What eases the pain?
What makes the pain worse?
What movements and activities have become difficult to do?
How well do you sleep? What wakes you or keeps you awake?
Have you experienced fatigue? Stiffness in the hands? Swelling in the legs? Headaches? Pain or stiffness in the jaw? Other symptoms I should know about?

I’d appreciate any advice on how to reach doctors with these suggestions.

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

pb50 | @pb50 | Jun 1 5:35pm
In reply to @formerpaa70 "Can we discuss biological vs prednisone in treatment? I'm v interested to know about results of..." + (show)
@formerpaa70

Can we discuss biological vs prednisone in treatment?
I'm v interested to know about results of biologics. I want off pred asap

Jump to this post

For PMR? I have RA and I’ve run through Enbrel and Humira and am now on Remicade.
The drugs in this class include Remicade (infliximab), Enbrel (etanercept), Humira (adalimumab), Cimzia (certolizumab pegol) and Simponi (golimumab). Probably others now. I know some have tried them on certain presentations of PMR but i don't think they were terribly effective.

REPLY
lmz | @lmz | Jun 2 4:09pm
In reply to @megz "I thought two of the main requirements for a diagnosis of PMR are that the pain..." + (show)
@megz

I thought two of the main requirements for a diagnosis of PMR are that the pain is bilateral, on both sides of the body, and that onset is sudden and acute. The questions should probably mention those?

Jump to this post

I think that the onset is not always sudden and acute (mine wasn't). My impression from speaking with various doctors is that they lack a sense of the range of ways the disease begins. That's the main reason for the general question: How did the pain begin? I want doctors to learn from their patients.

REPLY
lmz | @lmz | Jun 2 4:11pm
In reply to @tuckerp "I think you will find plenty of responses the pain started in one place or another..." + (show)
@tuckerp

I think you will find plenty of responses the pain started in one place or another leading them to incorrect assumption of diagnosis. I pursued a right shoulder issue with my orthopedic. As I was pursuing the issue it moved to both shoulders. I think eventually a bilateral issue comes into play.

Jump to this post

Yes! One rheumatologist turned my away because I said the disease started on one side of my spine. It soon became bilateral, but she didn't wait for that part of the story.

REPLY
lmz | @lmz | Jun 2 4:13pm
In reply to @pb50 "@dadcue can you make a contribution? @lmz i copied DadCue because he has had PMR for..." + (show)
@pb50

@dadcue can you make a contribution?

@lmz i copied DadCue because he has had PMR for years. I think your list is great. I have RA and there is significant overlap of symptoms with PMR.
Do you never have hand weakness? When mine started I thought it was carpal tunnel because my hands were numb and painful and so weak I couldn’t squeeze shampoo out of the bottle.
Thats the only symptom I don't see referenced. …

Jump to this post

Thanks. I'll add weakness in the hands to the list of questions.

REPLY
lmz | @lmz | Jun 2 4:18pm
In reply to @seniormed "Well thought out suggestions for a history and inventory of symptoms. Onset of the first symptoms..." + (show)
@seniormed

Well thought out suggestions for a history and inventory of symptoms. Onset of the first symptoms and any possible inciting conditions are also of interest.
Family history with PMR in my mother was important
in my case. I payed out of pocket to check IL-6 level at
a reference lab to consider therapy options.
There is no test or perfect screening algorithm for PMR.
It can take time for patient and physician to arrive at
the diagnosis with an outlier that has an atypical course.
Response to an adequate dose of steroid remains an
important point in diagnosis.

Jump to this post

How much did it cost to check your IL-6 level? Was it elevated? Did you pay for this test because your CRP and ESR levels were normal?

REPLY
lmz | @lmz | Jun 2 4:20pm
In reply to @seniormed "It will be interesting to see how AI handles the diagnosis. Will it over diagnose, misdiagnose..." + (show)
@seniormed

It will be interesting to see how AI handles the diagnosis.
Will it over diagnose, misdiagnose or hedge its bets.
A good physician learns how to say” I don’t know.”

Jump to this post

The AI will depend on someone's asking the appropriate questions, right?

REPLY
lmz | @lmz | Jun 2 4:27pm
In reply to @dadcue "Great questions but I'm not sure how these questions lead to a definitive diagnosis. The following..." + (show)
@dadcue

Great questions but I'm not sure how these questions lead to a definitive diagnosis. The following link written in 2014 speaks to the difficulty of diagnosing PMR. I don't think anything has changed in ten years except more research has been done specifically with biologic therapy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897167/

"One of the challenges in the diagnosis of PMR is the lack of any diagnostic tests that are specific for this entity. Additionally, given the multitude of other conditions that can mimic this diagnosis or present with polymyalgic symptoms, the diagnosis requires exclusion of other conditions."

The conclusion is spot on ...

Conclusion
PMR is a common inflammatory condition affecting individuals aged 50 years and over. There is a close association between PMR and GCA. Given the absence of any diagnostic tests specific to PMR, careful consideration should be given to excluding other mimics, particularly SpA and RA. Ultrasonography of affected joints may complement the clinical evaluation for the diagnosis of PMR. Treatment consists of prolonged GC therapy, but relapses are common. Moreover, GCs are associated with significant morbidity. Evaluation of therapies targeting inflammatory cytokines as alternatives to GCs in PMR is underway.

Jump to this post

To me, arthritis pain and PMR pain are very different (I have had palindromic arthritis for more than 30 years, and PMR for 2 years, 8 months). The pains come from different places. You can literally put your finger on the tender spots. I don't think most doctors understand this. And none of mine have yet suggested ultrasound.

REPLY
2 replies
pb50 | @pb50 | Jun 2 7:39pm
In reply to @lmz "To me, arthritis pain and PMR pain are very different (I have had palindromic arthritis for..." + (show)
@lmz

To me, arthritis pain and PMR pain are very different (I have had palindromic arthritis for more than 30 years, and PMR for 2 years, 8 months). The pains come from different places. You can literally put your finger on the tender spots. I don't think most doctors understand this. And none of mine have yet suggested ultrasound.

Jump to this post

Yea I haven’t had any of my five
Rheumatologists suggest ultrasound.

REPLY
DadCue | @dadcue | Jun 2 8:37pm
In reply to @lmz "To me, arthritis pain and PMR pain are very different (I have had palindromic arthritis for..." + (show)
@lmz

To me, arthritis pain and PMR pain are very different (I have had palindromic arthritis for more than 30 years, and PMR for 2 years, 8 months). The pains come from different places. You can literally put your finger on the tender spots. I don't think most doctors understand this. And none of mine have yet suggested ultrasound.

Jump to this post

I think ultrasound is used in the UK to diagnose PMR. I think ultrasounds have some limitations.
https://pubmed.ncbi.nlm.nih.gov/26535139/
I have had a few ultrasounds but they weren't ordered for the purpose of diagnosing PMR.

I basically believe if the treating physician says it is PMR then it is PMR until they change their mind. When another physician disagrees with the opinion of the first physician, go with the one you believe the most.

REPLY
View MoreView Less
Please sign in or register to post a reply.