Anyone else with acceptable CRP (3.5) but significant discomfort?

Posted by janetorcas @janetorcas, 2 days ago

Hi! Tapering slowly with excellent guidance from my Rheumatologist.
Since below 9 mg. I've been finding my discomfort at each level getting worse. I have been tapering 1 mg. per month.
I'm at 4 mg and due to drop another 1 mg. in another week. My doc has suggested alternating between 4 and 3 mg this time because of my discomfort. Today I felt like about 5 on the pain scale. Is this a common experience during tapering? Why the pain when CRP is ok?

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Hello! A small percentage of people with PMR have normal ESR and CRP. I am such a person. Many relapses occur at the 5 mg to 7 mg dosage level, I experienced this too. Had to revert to a 7 mg dose and the taper by 0.5 mg every 4 to 6 weeks. Good luck with this. I am finding PMR to be a frustrating experience.

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It sounds to me like your PMR isn't controlled. I have GCA and PMR, and I haven't had any pain since I started treatment 7 months ago. I'm currently at 9 mg prednisone a day and I also take weekly Actemra injections. You might need to go back to the dose where you didn't have any pain and either stay there for a while or else taper very slowly.

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Thanks for your insights! I guess I should also ask if you have an understanding as to why pain when inflammation is low. In other words, what is the primary cause for pain if not inflammation?

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@janetorcas

Thanks for your insights! I guess I should also ask if you have an understanding as to why pain when inflammation is low. In other words, what is the primary cause for pain if not inflammation?

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That is an excellent question, for which I do not have an answer. When I asked my rheumatologist how could I have PMR with a normal ESR, he said that although my ESR was within the normal range now, it could have been much lower in the weeks or months prior to the onset of symptoms. In other words, normal ESR for one person may be at or below the lower end of the statistically defined normal range. The onset of an inflammatory disease state could therefore cause an elevation into the mid or upper level of the normal range. In short, PMR must be managed primarily by symptom level, and not test results.

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