taper decision - stay at 1MG or keep going lower

What does your doctor recommend? I think the goal is always to taper off if you can. The question is if you can and when.

she says keep tapering. and take more naps.

lol… I can relate to more naps. It might have something to do with your cortisol level. I was so tired when I tapered off prednisone.

When we start prednisone, the body thinks there is too much cortisol so we can’t sleep

When we try to stop prednisone, the body thinks there isn’t enough cortisol and all we do is sleep.

My sleep routine improved after I tapered off prednisone.

I went from 1 1/2 mg/day to 0 in about 5 days. I've been at zero for almost two weeks. My shoulders were a little sore when I was taking 1 1/2 mg but it didn't get any worse when I completely stopped. The soreness started going away once I became more careful with my diet.

I had some back-up assistance from Actemra when I went from 3 mg to zero in a week. An endocrinologist said it was safe for me to go from 3 mg to zero without tapering as long as my cortisol level was good. Actemra was controlling my PMR symptoms.

A low cortisol level causes withdrawal symptoms which is easy to mistake for PMR. The best way for your cortisol level to rebound is to stop Prednisone.

Addendum: So long as your doctor says it is okay to stop prednisone.

I'm uncomfortable with your last sentence: "The best way for your cortisol level to rebound is to stop Prednisone." Stopping prednisone can be fatal for some people on this forum if it is not done correctly. It should be done in coordination with a doctor, and only when the adrenals have had a chance to start working again.

Good point ... I added an addendum.

An endocrinologist was monitoring my cortisol level when I stopped Prednisone. She actually double checked with my rheumatologist to make sure PMR was not active. Even an ophthalmologist got involved later on.

That's the big question - how do you know if your adrenals are back to "normal" ? My rheumatologist told me that a test for cortisol levels while taking prednisone will not yield accurate results.

I think you can assume your adrenals are working if you are reducing prednisone and you're not having any of the following symptoms of secondary adrenal insufficiency (from Google):

"Key Symptoms of Secondary Adrenal Insufficiency:
Fatigue: A persistent feeling of tiredness and lack of energy is a prominent symptom.
Muscle Weakness: Difficulty performing daily tasks due to weakness in the muscles.
Weight Loss: Unintentional loss of weight.
Gastrointestinal Issues: Nausea, vomiting, and diarrhea can occur.
Low Blood Sugar (Hypoglycemia): Can cause sweating, shakiness, and confusion.
Mood and Mental Changes: Irritability, depression, and mood changes are possible.
Changes in Appetite: Loss of appetite or cravings.
Low Blood Pressure (Hypotension): Can lead to dizziness or lightheadedness, especially when standing.
Abdominal Pain: Pain in the stomach area.
Dizziness or Fainting: May occur due to low blood pressure.

Less Common Symptoms:
Loss of sex drive (in women): Decreased libido.
Decreased pubic and axillary hair (in women): Due to the lack of androgens.
Hyponatremia: Low sodium levels in the blood. "

The weight loss symptom is interesting to me. I've just lost a little weight unintentionally, but I think it's from tapering prednisone, and not from adrenal insufficiency.

Decreasing symptoms of adrenal insufficiency mostly ... that is the problem when you are still on prednisone. Any amount of prednisone will cause an inaccurate cortisol reading. My endocrinologist said a prednisone dose of less than 3 mg should allow my adrenals to recover somewhat.

After I was able to stay on 3 mg of prednisone for an "extended period of time" an 8 a.m. cortisol level was checked. I couldn't take prednisone for 48 hours in order to get a more accurate 8 a.m. cortisol level. My endocrinologist was very interested in how I felt when I held my prednisone dose for 48 hours prior to doing this lab test.

When my morning cortisol level came back within range -- my endocrinologist still wasn't sure what would happen if I stopped prednisone. She just told me to stop prednisone and let her know if anything happened. It was more like a "leap of faith." My understanding was that I could take Prednisone again for any reason "if I felt the need."
--------------------------------------
My ophthalmologist said I had a need for 60 mg of Prednisone within days of me stopping Prednisone the first time. It was another problem that had nothing to do with PMR or my adrenals. I had a flare of panuveitis but most people don't have to worry about that. I had a prior history of uveitis but the way it flared surprised everyone.
https://rarediseases.info.nih.gov/diseases/8577/panuveitis