Hi @alanbruce -- thanks for starting this discussion. I want to reiterate that I have no medical background or training and I'm only sharing my experiences with my two occurrences of polymyalgia rheumatica (PMR).
1. During time tapering off of prednisone how did I know it was time to go back on a higher dose of prednisone -- I went back to the previous dose if the pain and stiffness was too much. This was subjective for me as I wanted to get off of prednisone and was willing to live with some minor pain.
2. How did the doctor know that the PMR was back - the second occurrence I told the doctor the PMR was back. I don't think it's something you forget after the first episode. The doctor order some blood tests to check the SED rate and C-reactive protein which are indicators according to Mayo Clinics Polymyalgia rheumatica - Diagnosis & Treatment:
-- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545
3. At what point did I think it was back - It seemed to show up rather quickly the second time. I started having trouble with my arms falling asleep at night since I'm a side sleeper. Then I would be in a little more pain in the mornings when I woke up and my shoulders and hands seemed stiffer. After a few days I was pretty sure the PMR was back and setup an appointment for a checkup. It did take me a week or so to get a doctors appointment to follow up.
4. Standard tapering process for prednisone - this is the 64 thousand dollar question. For my first occurance, my rheumatologist gave me a tapering schedule and I think it was tapering weekly starting with 5 mg reduction but he also told me it depends on how I feel when the dosage was reduced. I remember staying on 15 and 10 mg for multiple weeks and longer when I got to 5 mg. I think it's an individual thing and tapering schedules should be discussed with your doctor. I found some handy tapering calendars you can print off here:
-- https://rheuminfo.com/physician-tools/prednisone-tapering-calendar/
I would like to tag other members who have posted about PMR to get their thoughts. @sherw @Robert43DAP @kiltlady @selrahc @sallyann @cyndee @nancestl @charlena @jchatchett @rolandhp and others -- can you share your thoughts and experiences for Alan's questions?
John
Here are a couple of links with more information:
Rheumatology: 11. Evaluation of the patient with pain all over
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC80687/
Erythrocyte Sedimentation Rate (ESR)
-- https://rheuminfo.com/common-tests/erythrocyte-sedimentation-rate-esr/