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Normal Inflammatory Markers with PMR
Hi all - looks like a great site! I have been dealing with this disease since late February with an initial diagnosis of pinched nerves in both shoulders. When the pain started to spread to my neck, chest, arms and fingers, tests were ordered and a diagnosis of lupus was floated. Inflammatory markers normal. Muscles relaxers prescribed. When the pain increased and moved to my hips and legs, 5 day course of 20mg prednisone prescribed. Relief! But 2 days after stopping, pain spiked to 8 with any movement and PMR diagnosed, another 5 days of 20 mg prednisone, then 15mg. Same thing - pain too great! So back on 20 mg but going to try to taper after 10 days. My PCP checked my inflammatory markers and they are still in the normal range. I see Rheumatology in 3 weeks. Anyone else have a similar history?
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Welcome @lglowac, I don't think you are alone with normal labs as a quick search of Connect shows quite a few related discussions on PMR with normal labs - https://connect.mayoclinic.org/search/discussions/. If prednisone makes the pain go away that's a good thing. The problem is trying to taper off of the prednisone too fast and managing the symptoms while tapering down. Took me 3-1/2 years to taper off the first time around with PMR and 1-1/2 years the second time which was six years after the PMR went into remission the first time. You might find the following discussion by @dadcue helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
@tuckerp shared this YouTube video that you might find helpful:
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1 ReactionYes. Classical PMR started in 2023. All blood tests totally normal. At least 5% of people with PMR have normal CRP and ESR.
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3 ReactionsI also had normal labs, so it took 4 months to diagnose my PMR. (BTW, this happened right after my 2nd mRNA COVID vaccination in 2021) I was put on 10 mg. Prednisone and my pain went away immediatey. Note that I only had pain in my upper arms and thighs, but only at night while laying in bed! As soon as I got out of bed--no pain!
It took me about a year to taper off the 10 mg. Also note that I am a registered dietitian, so I eat primarily whole plant-based foods with a small amount of animal protein. And I focus of anti-inflammatory foods. I am also very active, working out 6 days a week--pilates, water workouts, and Zumba. Not sure if the exercise component played any part in my recovery, but I do feel that my diet did. Wishing you a speedy recovery.
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2 ReactionsThe rheumatologist will order much more extensive blood work which should help with your diagnosis and a more consistent prednisone dosage. I started my journey with the pinched nerve diagnosis too and got all the way to a neurosurgeon before he ordered blood work for a suspected autoimmune disorder. My initial blood work showed inflammation and subsequent results ruled out most everything else but PMR and possibly MGUS or something similar. I went from 15mg prednisone for inflammation to 25mg for PMR. I've been able to taper to 22.5 after failing at 20mg.
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2 ReactionsLike you I was being treated for shoulder issues to go so far as localized cortisol. I kept telling doctors over and over the same thing bilateral pain in shoulders and upper arms and couldn't do the ADLs. Not sleeping. Couldn't sleep in bed had to sleep in recliners. I am with Kaiser where appointment s can take months I kept going to Urgent Care. Finally one doctor immediately diagnosed pmr and started me on 40 mg in after two months of excruciating pain. Currently, I am going through taper and currently at 2 mg prednisone. Though I maintaine functionality and range of motion it is the pain that is increasing. During this experience the prednisone has been the worst brain fog, severe fatigue and all the other side affects.