Normal CRP , ESR but clinical PMR

Posted by jmldio12 @jmldio12, 15 hours ago

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?

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

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?

REPLY
Profile picture for jabrown0407 @jabrown0407

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?

Jump to this post

@jabrown0407
I started prednisone 20mg/day early December. I responded pretty well and was improving over the next few months. Started a taper in March initially 2.5mg decreases every 10-14 days with bloodwork each time I tapered. Once I got to 5mg/day I tapered by 1mg every 2 weeks. Currently on 1mg/day and will stop in another week.
OTC NsAIDs don’t really help at all, so I use heat on my shoulders twice a day. Most days I can do my normal activities but I’ve had days now and then when the pain gets worse. I have trouble sleeping most nights because of bilateral hip and shoulder pain, but it improves when I’m up and active. It’s like a roller coaster, I don’t know why I have some bad days and I really am trying to work with my providers to find some answers. X-rays of my shoulders didn’t show a whole lot, but the provider said we can’t rule out rotator cuff issues.
Between the way this all started—just left shoulder/biceps at first, then out of the blue my right shoulder/biceps and neck along with both hips—makes me doubt it’s rotator cuff. So once I’m off prednisone completely I’m hoping they will do further imaging. I wonder if this will ever resolve or if I just have to deal with the current status quo forever.
BTW I have a doctorate in Pharmacology with a focus on immunology…..

REPLY

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?

REPLY
Please sign in or register to post a reply.