Weaning off of prednisone & pain management

Addendum: The following excerpt are the words of a true expert on the subject. She told me the following:

"With more than 10 years of prednisone dosing under your belt, I would surmise that the possibility of prednisone tapering would be fraught with disappointment and failure. Each step down titration in dose is done with the purpose of lowering the blood serum level of circulating cortisol to an uncomfortable level (eliciting symptoms of low cortisol - nausea, severe muscle/joint pain, diarrhea, low blood pressure, low appetite, chills/sweats). Each step down titration in dose is meant to coax the Pituitary gland to “awaken” from its suppressed/retired state. The fact that you have been on prednisone for more than 10 years would be a negative prognosticator for a successful Pituitary reboot.

What does this mean?

Most likely, you will need to remain on a replacement level of corticosteroid (hydrocortisone is preferred) for life. You will need to take daily medication to provide for corticosteroid normally produced by the adrenal glands."
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How is it the pituitary gland is affected? You need to remember that Prednisone disrupts the entire HPA axis. The Hypothalamus-Pituitary-Adrenal axis.

My rheumy told me the adrenal gland starts making cortisol at around 8 to 10 in the morning. I know I feel better in the afternoon than in the morning. I take turmeric gummy once a day and eat a few prunes, and a cornucopia of other vitamins most days. I mostly avoid the stuff you are not supposed to eat but I figure small transgressions are small. Like one glass of wine as opposed to none. Plenty of sugar in alcohol. Im at 7mg prednisone after hitting a wall at 4mg. At 7 I can once again squeeze toothpaste out of a tube with one hand and ballroom dance for a solid two hours many times a week. At the end of dancing I run in to a wall of exhaustion and head to bed. Sleeping is a challenge, especially with a full moon. Im 65 and male and used to being pretty active. Started my prednisone at 15 mg in beginning of June for PMR. It was barely enough in the beginning. Im guessing another 6 months to taper off the prednisone at 1mg reduction per month. Looking forward to adding tart cherry to my routine.

"My rheumy told me the adrenal gland starts making cortisol at around 8 to 10 in the morning."

Actually the adrenals start producing more cortisol earlier at 3-4 a.m. in the morning. It is part of the circadian rhythm that begins the waking up process in the morning. Cortisol levels peak at 8-10 a.m in the morning and gradually reduce throughout the day assuming the day isn't too stressful.
https://www.sciencedirect.com/science/article/abs/pii/S0303720719303545#:~:text=The%20HPA%20axis%20exhibits%20pronounced,can%20lead%20to%20disease%20states.
Your rheumatologist is correct because there is a sharp increase in cortisol production after you wake up.
https://www.sciencedirect.com/topics/medicine-and-dentistry/cortisol-awakening-response
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People with PMR often complain of "early morning" pain and stiffness. The pain I had would wake me up at 3 a.m. in the morning. That is when cortisol levels are at their lowest. It makes sense that inflammation increases and causes pain because inflammation isn't being regulated well when cortisol levels are low. Pain was my cue to take some prednisone.

Some people survive the entire night and wake up in the morning at about 8 a.m. and take their prednisone. Regardless, prednisone still is our cortisol replacement. Unfortunately, oral dosing with prednisone is a poor substitute for everything that cortisol and the HPA axis does.

It is more about the HPA axis being disrupted by prednisone and not solely about adrenal insufficiency and low cortisol levels.

Any lingering pain is totally gone and feel you totally alive, it's a wonderful thing

I had some lingering pain but the pain could be explained and it wasn't caused by PMR. I felt alive again but not as soon as I tapered off Prednisone. It took a long time and it was eventually a wonderful thing to be off Prednisone.

Whoever thinks prednisone gives your life back --- that feeling is only temporary. Long term use of prednisone saps the life out of you again if you ask me. What remaining life I had was characterized by overwhelming fatigue.

Pain wasn't good either so I certainly think there was a need for me to take prednisone in the beginning to stop the PMR pain. I'm not so sure I needed prednisone to control my "PMR pain" for the entire time I took prednisone.

Pain wasn't my "overwhelming problem" most of the time until it recurred on low dose prednisone. I would tell my rheumatologist, I needed a "cortisol fix." compared to having a "flare of PMR."

I often add water to juices, though I rarely drink juice. It's easy to add water as ice cubes to juice or your fav soft drink, then drink it slowly so the ice melts. Since I mostly drink water or decaf iced tea (no sweetener), this is actually my preference to reduce that syrupy and extremely sweet character.

I completely agree with this. In cases the cure is worst than the disease. I started on 20 mg of pred and felt pretty good. After a month I started to taper against the warnings of my Primary care Dr. I was taking 10 mg when I saw Rheumy. No PMR issues based on blood work. Rheumy put me on a 1mg/month taper schedule. I decided to go faster and went from 10 to 4 mg in 10 weeks. Was pretty tied most of the time but kept of my routine of hiking 40-50 miles/week and stretching 2-3 X/day. By end of August pain was pretty bad but blood work did not show any issues with PMR. Went up to 13mg of pred and starting working my way back down. By middle of September I started to to connect the dots to what I ate to how much pain I was having. I also discovered that sitting in a sauna did wonders for the pain. I redid my diet and have been able to get down to 3.5 mg with only mild pain and almost no fatigue. This week for the first time in over a year I feel mostly like my old self. I apologize for posting all of this on someone else's thread but we are all here to help and support each other

I had the very same experience twice. That is a 50% reduction which is very drastic. I left my Rheumatologist after the second failure to taper. My new doctor had me do 10mg one day, 7.5mg one day, alternating for several weeks. Then I stuck with 7.5 for a few weeks. I am now on 7mg. I will continue to taper over time by .5 mg as far as I can go without too much pain. The jump from 7.5 to 5 is too much too fast. Good luck!

I have no experience with the raised bed or ice water, however I do have to take Advil around the same time each time and find that it helps with the pain quite a bit. I take 2 Advil gels and that's it...won't go above it.

Tapering down from 25 mg prednisone for my PMR over several months. At 10 mgs, started down by 1 mg per month. Finally got down to 5, taking 3 in the morning and 2 at night, the kind of timing which works best for me. When I dropped to 4, however, a slow flare-up started, so now back to 5. Rheum and I agree to now drop by 1/2 mg per month and see if that works. Tapering is tricky.