How does your pain come back when decreasing dosage?

@anniz

It is really difficult to know what to do when we get to a prednisone dose of 5 mg or less. That is approximately the dose when our bodies start to realize our cortisol level is too low.

When we exercise, it should cause a normal "healthy spike" in our cortisol level to provide energy for the workout. This cortisol spike is normal and helps to regulate the inflammation from exercise and the increased cortisol level promotes muscle repair.

When our adrenal function is suppressed by Prednisone, our body has no way to generate a cortisol spike. That in turn causes excess inflammation and our muscles don't recover very quickly.

I wish someone had explained this to me when I first started Prednisone. My very first side effect from long term Prednisone was "exercise intolerance." The very first thing I noticed after I tapered off prednisone was how my exercise tolerance improved. After every physical therapy session it took less and less time for me to recover.

When I took prednisone for PMR... it could take days or weeks for me to recover from exercise. I'm convinced that PMR was only part of the problem and being on Prednisone caused most of the problem. When PMR was first diagnosed, I remember taking more prednisone so I could exercise because my body wasn't producing enough cortisol. PMR was at its worse when I was first diagnosed but I could still exercise if I took enough Prednisone.

It is medically understood that prolonged use of prednisone and similar corticosteroids causes adrenal suppression (or adrenal insufficiency). This means the body's adrenal glands stop producing sufficient natural cortisol because the medication is providing a synthetic version.

Prednisone replaces the naturally occurring hormone cortisol. The seriousness of this should not be underestimated. I was NOT addicted to Prednisone but my body depended on me taking Prednisone after my adrenal function was turned off.

I was never sure how to overcome this problem until an endocrinologist explained it to me and helped me to successfully taper off Prednisone. It was also very helpful when my rheumatologist switched me to a biologic medication that didn't suppress my adrenal function.

My question is that I have no pain in my joints at all. I am down to 5mg, but my problem is that my muscles in both arms and legs are so stiff that it makes it so hard to walk or doing anything physical. Is that considered a relapse?

My problem is I refuse to increase predisone. I havn't cut back on exercise and haven't increased the dosage once due to pain, but the fatigue is finally getting to me. I just reduced to 4 mg.
Thanks @dadcue. What you posted was encouraging. I can stand a little pain while reducing, so I'll hang in there.

@dadcue
How long were you on Pred and what do you feel is long term before your body stops naturally making cortisol

@mezack25

Prednisone is a synthetic form of the naturally occurring hormone called cortisol. In essence, prednisone replaces the cortisol that our adrenals produce. After "long term" prednisone, it takes a long time for our adrenals to start producing cortisol again.

Medical sources say cortisol levels decrease after one dose of prednisone. The ability of the adrenals to produce cortisol is suppressed as soon as 3 weeks after starting Prednisone The following is what Mayo says:

"Prednisone is like cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their usual function."
https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/expert-answers/prednisone-withdrawal/faq-20057923.
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The longer we take Prednisone, more time is needed for the adrenals to start producing cortisol again. This is probably the most important reason why Prednisone can't be abruptly stopped and why we must taper slowly.

"When you taper off prednisone, your adrenal glands have time to catch up and make normal levels of cortisol. This could take weeks or even months, depending on how long you took the medication or how high your dose was."
https://www.webmd.com/rheumatoid-arthritis/prednisone-taper
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I took Prednisone at moderately high doses for 12 years. When Actemra allowed me to taper off Prednisone, I needed a year for my adrenals to recover. I had to stay on 3 mg of Prednisone for 6 months because of a low cortisol level. When I had adrenal insufficiency, 3 mg of Prednisone was my "maintenance dose" to compensate for a low cortisol level. After 12 years on Prednisone, my endocrinologist wasn't very optimistic about me ever being able to discontinue Prednisone completely.

After 6 months on 3 mg of Prednisone, my endocrinologist said my cortisol level was "adequate" but she didn't know what would happen if Prednisone was stopped. When I decided to stop prednisone, I was told to restart prednisone again for "any reason if I felt the need." When I stopped prednisone, I had a need to restart it again a couple of times for multiple reasons. However, I never had a PMR flare as long as I took Actemra.

My symptoms adrenal insufficiency (overwhelming fatigue) persisted for more than a year after I first stopped Prednisone.

My endocrinologist said any amount of Prednisone will suppress the ability of my adrenals to produce cortisol again. She "encouraged" me to stay off Prednisone if I could. Since Actemra controls PMR, I don't need Prednisone for PMR anymore. Actemra doesn't suppress my adrenal function. I haven't needed Prednisone for about 5 years.

@dadcue
Thank you very much for taking the time to explain. I wish you well.

@mezack25

No problem ... It was very difficult for me to taper off Prednisone. It was impossible to taper off prednisone until Actemra was tried.

The way prednisone suppressed my adrenal function was very complicated. I'm just beginning to understand everything that long term prednisone did to me. I needed prednisone when I had all the pain but I'm much better than I was. I had so many relapses but I don't think it was only PMR that caused all the relapses.

After Actemra controlled PMR, it still took a long time to recover from being treated with prednisone.