Tia and list,
Your post brought a few issues to mind.
here are some thoughts to ponder--
What was your tapering schedule with the prednisone? (how many mg. dose,
how many times a day, initially, and then how was it reduced?)
Did you contract an infection, cold, etc., while in the process of weaning
it down? essentially anything that caused you increased stress, moderate to
severe?
Did you ever, in all the time with adrenal 'shutdown,' have an endocrine
workup, done by a competent endocrinologist?
Were your symptoms ever bad enough to go to an ER and tell them you had just
come off prednisone?
From my perspective, with adrenal insufficiency, adrenal crisis is a life
threatening situation, and must be treated promptly. Triage nurses who are
wonderful will catch it. Endos will catch it. Gen. practitioners will only
do an ACTH stimulation test when the patient's cheeks turn to dark splotchy
patches, an effect from excess stimulating hormone. And THAT is when the
patient is very close to circulatory collapse.
If there is any extreme stress during the weaning down of steroids, the body
can use up all the steroid available, essentially needing more total
cortisol to deal with the stressor. And the steroid levels must be kept a
bit longer at the pre-stressor dose, perhaps a week or two, til the stress
is back to normal level. Then gradually the weaning down can occur again.
I hope you have gotten through the worst of it, and are feeling better now!
Holly
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