PMR (ending prednisone) and Osteoarthritis flare up

Did you experience any symptoms of adrenal insufficiency?

Adrenal suppression is probably inevitable with any dose of Prednisone. However, adrenal suppression is only temporary for most people. I was told that 12 years on Prednisone was a long time but as long as my adrenals were able to produce cortisol again then my cortisol level would improve with time. Some people have adrenals that are permanently damaged and incapable of producing cortisol again.

I can only guess at my cumulative dose of Prednisone spread over 12 years. It was probably in the neighborhood of 100,000 mg. I probably averaged 30 mg per day for 5 years. Then an average of 20 mg per day for another 5 years. Finally 10 mg per day for the last 2 years just for PMR alone.

That doesn't count the many times before PMR was diagnosed. For other autoimmune conditions, I took upwards of 100 mg per day but tapered off in a month or two. People have many misconceptions about Prednisone tapering and how much Prednisone is needed. It really depends on the condition being treated. How long the condition is treated makes a difference in how long it takes to taper off. The problem with tapering off Prednisone stems mostly from HPA axis suppression.

The guidelines from endocrinologists say the following:

"R 2.1 We suggest not to taper glucocorticoids in patients on short-term glucocorticoid therapy of < 3-4 weeks, irrespective of the dose. In these cases, glucocorticoids can be stopped without testing due to low concern for HPA axis suppression."
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency
---------------------
What surprised me the most was when my endocrinologist said 3 mg was such a small dose that there was no need to taper. The justification she used was that my cortisol level was adequate and PMR was controlled. The thing that worried me was my endocrinologist didn't know what would happen if I stopped taking Prednisone.

I was concerned that going totally off Prednisone might take some time for my adrenal glands to catch up. I have been off now for only a month and have not been tested yet but based on how I feel, I think the levels are OK. What has changed is my thyroxin. I had my thyroid removed about ten years ago. It took three years to reach a balance with Synthroid. It was then OK before my series of auto-immune diseases began. I was able to adjust as needed in recent years but upon finally stopping Prednisone, my TSH dropped to 0.7, well below normal so am now decreasing my Synthroid, like the Prednisone, one step at a time. I’m beginning to think that once one body function stops working right, you can expect there will be a chain reaction that never ends.

I had quite bad OA in both knees before PMR. The Prednisone stopped the knee pain for the 18 mths that I was taking it. Have been off the Prednisone for a few months and weaning myself off Hydroxychloroquine as well and knee pain is back with a vengance. My inflammation markers are low so I know it's just mechanical pain from worn out joints and winter chill.
I'm managing it with analgesics and diet and intend to stay off immunosuppressive meds as long as i can continue to function without them. I see the knee pain as a sign that my body is recovering from the ravages of PMR and immunosuppressive meds. I'm back to managing the effects of age.

A very good question. How do we know what is PMR and what isn't. I have been gardening like crazy and my neck, hips, leg have hurt so bad, I have cried. Just when do we consider it may be something else?

I had an OA issue develop in my wrists (confirmed by xray) as I tapered below 5. It has disappeared entirely since getting to zero 3 months ago. Thinking that resumption of my cortical production has suppressed it. I did not have any OA pain issues before PMR.
Hang in there, it might just go away.