← Return to PMR with normal labs and having severe thigh pain

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Profile picture for jmldio12 @jmldio12

Seems my providers are skeptical about a PMR diagnosis since my inflammation markers have been normal but my symptoms and clinical picture are totally consistent with PMR. Good response to prednisone but now tapered and have lingering pain in hope snd shoulders that improves with activity.
Any ideas on what to do next?

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Replies to "Seems my providers are skeptical about a PMR diagnosis since my inflammation markers have been normal..."

How long were you on prednisone? And what dosage was needed to mask the pain? How long did it take to taper? How much pain are you having? Do any of the OTC pain meds help or do you need prednisone to cut the lingering pain?
I am asking these questions because PMR can present without elevated inflammatory markers, however I assume that the treatment and timelines are similar. Mine came with super high inflammatory markers, so that was not my issue. PMR is known to "burnout", which really means it goes into remission to wait for another day to pop back into your life uninvited, so this could be the case with you. I am not sure what information you are looking for, so could you please clarify your question for us?

So have you had your cortisol tested? Since steroids mess with it, it might be worth it to have it checked. Your inflammatory markers are not showing problems so it is questionable to depend on them to provide any useful data. Have you tried going back to 3-5mg steroids per day to see if that cuts the pain? Your tapering schedule is aggressive compared to what we normally see in this chat room, but if it works, I'm not complaining. Most people taper very slowly at the below 5mg per day level since this is the critical part for the adrenal glands. Adrenal insufficiency pain can easily be confused with PMR pain so that may be what you are struggling with - which leads back to the cortisol test.

As for rotator problems, a visit to an ortho who specializes in shoulders should be able to tell if you need rotator surgery. I have had it on both shoulders and recovery is slow and painful. I am fully recovered and have full range of motion on both sides. My right shoulder can be painful and my surgeon told me I need replacement surgery. Since I have full range of motion, I told him to take a number and have a seat. I'm in my 80's and I have no interest in recovering from shoulder surgery one more time if the surgery is optional. I get steroid injections from time to time.

Your education and training are impressive, I'm officially jealous, especially since I am hypersensitive to drugs and I know I don't have a clue about pharmacology.

BTW, NSAIDs not touching the pain is consistent with PMR pain, jic you did not realize. If your doctors are doubtful about PMR, do they have another idea to put on the table as to what your problem might be?

@jmldio12, you might be interested in these related discussions:
- PMR with normal labs and having severe thigh pain: https://connect.mayoclinic.org/di- cussion/pmr-with-normal-labs-and-having-severe-thigh-pain/
- Do I really have PMR?: https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/