Titration steroids using Tyenne but now at a stuck point

Well, I had asked about ordering a cortisol level and he said he didn't check cortisol. I have been thinking that if I'm tapering less than 3mg, I would start having some symptoms before I get to 0. Hadn't thought there could be a problem after I stopped if I got to 0 with no problems.

I went back and looked at his clinical notes.
"I would like to keep her on a low dose of prednisone and I advised her that she could try 3 alternating with 2 mg every morning."
So maybe I misunderstood that I could try and taper to 0.

@pmrsuzie
I stopped taking prednisone about 6 months ago for GCA and PMR. I'm still taking Actemra injections. I didn't have any issues with stopping prednisone until a couple of weeks after I completely stopped. Then I had some mood issues and fatigue for a couple of weeks. That cleared up after a couple of weeks, and my metabolism also recovered from the prednisone at that time.

I was on prednisone for a year. I think the amount of time you feel bad after you stop depends on how long you took it and also the total amount of prednisone you took during your treatment.

@pmrsuzie

Cortisol levels aren't checked very often as we taper off Prednisone for a couple of reasons. For one thing, you need to be on a very low dose (3 mg or less) for a long time (at least 6 months) according to the endocrinologist I saw. A person shouldn't take any prednisone for at least 48 hours before a blood cortisol level is drawn in the morning.

The endocrinologist I saw was honest about Prednisone. She said secondary adrenal insufficiency was an inevitable side effect of long term Prednisone use.

As the following link says:
"Duration of glucocorticoid therapy to pose a risk for adrenal insufficiency:
3–4 weeks or greater."
and
"Dose of glucocorticoid therapy to pose a risk for adrenal insufficiency:
any dose greater than daily hydrocortisone equivalent of 15–25 mg (4–6 mg prednisone or prednisolone"
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency
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By comparison, I was on prednisone doses greater than 15 mg for 12 years.
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There isn't any treatment for prednisone induced adrenal insufficiency except for discontinuing prednisone. Staying on a low dose of prednisone helps but getting off prednisone completely allowed my adrenals to fully recover. The entire process took a long time. As the above link acknowledges:

"the recovery of adrenal function varies greatly amongst individuals."
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When I was struggling with tapering off Prednisone -- the question wasn't about WHEN my adrenal function would recover. The question was more about IF my adrenal function would recover. My endocrinologist wasn't overly optimistic and only said it would take a long time for my adrenal function to recover.

The main reason why cortisol levels aren't checked very often is because our need for cortisol varies greatly from hour to hour and from one day to the next. Cortisol levels fluctuate constantly in response to stress, infection, and physical activity. A single, cortisol level doesn't reflect how much cortisol is actually needed depending on circumstances and doesn't provide the full picture of a person's adrenal function.

If our adrenals are slow to recover ... we need to continue taking prednisone. PMR will likely flare again at lower Prednisone doses. I was stuck in the "taper trap" until Actemra allowed me to escape the trap.

@pmrsuzie

"Hadn't thought there could be a problem after I stopped if I got to 0 with no problems."
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The risk of an adrenal crisis persists for months and some sources say a year after Prednisone is stopped. The adrenals have to be capable of ramping up cortisol production rapidly when something very stressful happens. Stopping prednisone is just the beginning of allowing the adrenals time to recover. The adrenals will likely be "sluggish" and won't be capable of a rapid increase in cortisol production after prednisone was stopped. My adrenals were only producing enough cortisol for normal low stress days but not necessarily for days of high stress or during an emergency.

Well, I am not going to have the cushion of being on a biologic. This is depressing news. Next appointment is in 6 months. I guess I might as well just get to 2mg til then and see how I feel. My original dose was 20mg. I got down to 10mg in a reasonable amount of time. Once I got below 10mg, I kept having problems. I do not remember going above 10, most of the time was between 5 and 10mg.

Permanent low dose. Is there a low dose that is too low?

@pmrsuzie

It was depressing news to me too when I found out after 12 years of prednisone. Actually, I was already depressed so the news about adrenal insufficiency was just one more thing to deal with. I want to encourage you to keep trying and don't ever give up.

My rheumatologist said being on 3 mg of Prednisone for the rest of my life wouldn't be that bad. You are doing great getting to that low of a dose. I rarely could take less than 10 mg of Prednisone without having a major problem.

I had a biologic cushion when I finally got off prednisone. It was still hard to taper off Prednisone because of adrenal insufficiency. The biggest thing that Actemra did was to control PMR without suppressing my adrenal function.

I'm at the same place. Can get from 5 to 4. Go to 3 and I relapse. Extreme pain in feet and knees. Had to go back to 5.