Reducing predisone side effects

@pmrsuzie
If you discuss it with your PCP, then you are not just doing it on your own. You have covered yourself by involving a doctor who can steer you away from something that could be harmful. We usually have more than one doctor in our treatment.

@kjoed53
Well, not exactly. My rheumatologist sends my PCP a very detailed letter about what we dicussed, his assessment and the instructions. I saw her a few weeks ago and told her I did not follow his taper plan. (She chuckled a little and said "what did you do?) I was supposed to alternate 3 and 2 mg. Did not specify for how long and my next appointment was 6 months. Maybe I'm still supposed to be alternating. I attempted and succeeded to get to 2mg. I was having trouble with the logic. Maybe alternating that long had something to do with adrenal function. Not sure. When I told her what I did, she said to stay at 2mg til I see him so that's what I'm doing.
There are many rheumaloloists at UPMC all with various specializations along with general rheumatology. The only physician/professor with a special interest in pmr was Dr Sattui and he has moved on. My rheumatologist's expertise is myositis. He is very well regarded and an excellent Dr.. Pmr is not textbook with ever revolving complications.. I would like to be off prednisone but the lowest possible dose where I am pain free, without complications might be my best bet.

@kjoed53

My rheumatologist appreciated it when I informed her whenever I "adjusted" my prednisone dose. She was only worried that I might increase my prednisone dose for the wrong reason. She wrote what she called a "standing order" so I could check my inflammation markers whenever I was thinking about increasing my prednisone dose.

I somewhat appreciated that I could check my inflammation level whenever I wanted to. Trouble was ... the lab informed my rheumatologist about my inflammation markers whenever I checked my ESR and CRP on my own. Before long ... my rheumatologist was calling me to tell me my levels were high. She only wanted to know how much more prednisone I took.

@dvorahberlin
I started at 15 mg in December, 2025 and this week am at 4.5 mg. I am noticing some discomfort at this stage and may stay at this dosage for a while. I had been tapering 1 mg per month before mostly and reduced to tapering 1 mg every 2 weeks. I hate the weight gain (15 lbs) .

@eltje I believe the weight gain will solve itself as appetite is not goin to stay same level. I also started to mostly cut out wheat and sugar , not for weight reduction but rather for inflammation reduction and have lost weight automatically

Once we have tapered down to 5mg prednisone and below, aren't we at the mercy of our adrenals because they need to start waking up and producing cortisol again? I'm not there yet. I just decreased from 9mg to 8mg this morning. Isn't there a morning cortisol test to verify that our adrenals are back to working, or else how do we know they are? I have a rheumatologist (PMR) appointment in two days and I'll be discussing this among the many questions I have.

@kjoed53 I;ve read that adrenals start to wake up at 7.5. How did your appointment go? Mine is this afternoon.

@kjoed53 I;ve read that adrenals start to wake up at 7.5. How did your appointment go? Mine is this afternoon.

@mp71

The physiological dose of prednisone ranges from 3 to 7 mg daily. It is probably closer to 5 mg which is the amount of prednisone that "adequately replaces" the amount of cortisol the body needs every day. It depends on the day and the amount of stress you experience which is why cortisol is called the "stress hormone."

I think 7 mg is not quite enough Prednisone to handle something stressful so that is when we start to have symptoms of a low cortisol level. I also think it explains why so many of us have a flare when we reach 7 mg of Prednisone when something stressful happens.

An endocrinologist told me I had to remain on a Prednisone dose of 3 mg or less for an extended period of time in order for my adrenals to start to function again.

Some sources say 3 mg of Prednisone is the"physiological" dose, meaning it mimics the amount of cortisol the adrenal make during "low stress" days. The adrenals are capable of producing much more cortisol when stress is high. In any case you need to be less than the physiological dose for the adrenals to begin to wake up.

The adrenals don't wake up very quickly so it takes a long time to taper off Prednisone. When my cortisol level was low, I was told not to taper my Prednisone dose any lower than 3 mg for as long as it took for my cortisol level to improve. Meanwhile, I was told not to increase my Prednisone dose unless I absolutely needed to. It was difficult to stay on 3 mg when someone else said to increase my prednisone dose for "niggles of pain."