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@dadcue

It is difficult to be hopeful when a person is still on prednisone. The following was inspirational to me. Everything was explained to me by a person who had an adrenal crisis. Her only motivation was to spare me the same fate. She said the following to me before she died.

"A person with low cortisol often will experience erratic bursts of adrenaline - anxiety, rapid heart rate, flustered mood. Adrenaline is secreted as a means to compensate for lowering cortisol as the Pituitary/adrenal duo falters. Insomnia is another frequent manifestation of waxing and waning cortisol.

As cortisol is dependent for life, the body will do everything in its power to compensate for a slowly failing Pituitary-adrenal axis. The Pituitary gland does not falter without a good fight. Waxing and waning low cortisol symptoms, feeling OK one day and feeling as though you have been hit by a Mac truck the next day, reflect this insidious downward trajectory.

The body produces about 5 mg of hydrocortisone/cortisol a day. An external/exogenous dose of prednisone in excess of 5 mg a day is where the pituitary suppression and adrenal gland atrophy originates. Anything above 5 mg of exogenous steroid a day (oral prednisone) and the Pituitary gland correctly “reads” that it does not need to tell the adrenal glands to secrete cortisol. The oral dosing is covering (in excess) the body’s daily need."
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First I had to find a way to stay on less than 5 mg of prednisone daily and stay there. My luck came when my rheumatologist wanted me to try Actemra and I was able to taper down to 3 mg. I stayed on 3 mg per day for nearly a year before my cortisol level improved.

It wasn't helpful when another source was telling me to increase my prednisone dose and it was okay to take 5 mg of prednisone for the rest of my life. I resisted the "prednisone fix" that was recommended by the other source and eventually everything started to improve.

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Replies to "It is difficult to be hopeful when a person is still on prednisone. The following was..."

The "prednisone fix" as you call it is the only way I can get out of bed and function relatively normally at the moment, so I'm not going to "resist" prednisone for now. Things for me may rapidly deteriorate rather than improve without prednisone, and I currently have no PMR pain and am relatively mobile on a split dose 6mg morn/1.5mg evening. The daily pain, immobility and sleep deprivation pre-prednisolone were intolerable, awful. So I can't be converted to a life-is-better-without-prednisone position till I have a reasonably good chance of that being true. Slowly and (hopefully) surely is the way I'll go with the meds reductions.

While we have active PMR, the body needs more cortisol to control inflammation than the 4-6mg equivalent that is usually produced. Otherwise our own bodies would have been able to fight off the PMR inflammatory auto-immune response without prednisone.

Actemra is probably not for me. I have latent TB (was exposed to tuberculosis as a teen but didn't develop the illness at the time) and a tendency to get digestive fungal infections, both high risk problems with Actemra.