1. < Polymyalgia Rheumatica (PMR)

New to PMR - Are Monthly Labs and Check-ups normal?

Posted by abbeyc @abbeyc, Mar 28, 2022

Hello, I am kind of new. 3 months with PMR but I am wondering how everyone is dealing with their doctors. So far my Rheumatologist is saying I need to see him once per month for labs and then check-up/medication recommendations (starting to taper). This will get very expensive with monthly doctor visits for what I understand will be YEARS of PMR. Is everyone doing this? or managing somehow on their own? But we need to the docs to write the prescriptions obviously.

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razhuny | @razhuny | Aug 11, 2023
In reply to @chzuck "I was diagnosed in 2020 with PMR by my family doctor. He treated me for a..." + (show)
@chzuck

I was diagnosed in 2020 with PMR by my family doctor. He treated me for a time, changing my dose weekly. Told him repeatedly I did not want to be on Prednisone for a long time, to which it appeared he turned a deaf ear.
Next went to a Rheumatologist with almost the same treatment, except monthly changes and an insistence on splitting the does in half and taking morning and evening. I told the doc I wanted off and so I gradually reduced the dose to 3 or 4 mg/day. I could not operate like that, so back on at 10 or 15mg and taper down at 1mg/month. Seems that is all I have been doing. Finally in May I said I am not dropping for the summer, I want to feel good enough to do things. Prednisone has given me thin skin. My arms have blotches all over. A slight bump or brush and my skin is ripped and I am bleeding. Finally at my insistence for something else, I am being evaluated for methotrexate. Looking for experiences others have had with PMR. The two markers I get tested get tested for every two months, CRP and Sed Rate, almost never reflect my pain/discomfort level. The only time those results were high is when I was first diagnosed. I think it a waste of time even doing them.

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So sorry you are having trouble with your dosage of prednisone. PMR is a tricky condition that interferes with our normal everyday life. I was fortunate to meet my rheumatologist in the ER when I was already nonfunctional. My sed rate was 98 with very high CRP. When I had my first office visit he told me, If you want to get off Prednisone, follow my direction for a gradual tamper. If you go back and forth on dosage, you will never get off! That was his advice. I have gone from 15mg down to 7mg in 9 months with no flare ups.
Wishing you a successful journey with this tricky condition!

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