Is there anyone on here that had HPA suppression from inadequate weaning of steroids who went on hydrocortisone and then successfully weaned off to restore HPA suppression? If so, how did you wean? I've unfortunately suffered rapid withdrawal of steroid damage twice now....once from a prescription of Prednisone and then again 2 months ago after a stomach bug sent me to ER in crisis and the ER doc gave me Wrong advice and told me to go back to my regular dose of HC the next day. I'm in pretty rough shape and was put on 40mg of HC by my regular doc when he found out what happened and told to take it for 5 weeks and then begin tapering down. My feet and legs are in rough shape and I'm down to 30 mg now but the legs and feet were in excruciating pain even at 40 mg. Any words of wisdom?
Are you trying to wean OFF or wean down to a normal dose?
I must say even though I am not in that position, I know others like you - and if your adrenals atrophied, you may be on HC or the like forever. So while you may be able to wean down to a replacement dose - don't even think about going down to zero without a stim test to see if your adrenals are working.
As for the pain - I would stay at 30mg for now until you can see the doctor, and ask her to get advice. You may need other medications to support your adrenals.
I had the CRH test for Cushing's. I am not really sure if it works for HPA function per se - it is a test for source.
"Ovine CRH is a potent stimulator of pituitary ACTH secretion in humans. The ovine CRH stimulation test is used to differentiate pituitary ACTH dependent Cushing’s syndrome from ectopic ACTH secreting tumors and adrenal dependent Cushing’s syndrome. It also helps to distinguish between hypothalamic and pituitary dependent adrenal insufficiency."
I've known several people who now have Seizures from having the ACTH stim test. I saw a new endo last week and he said I would have to be off HC for 24 hours for the stim test. That's a good way to die or end up with brain damage.
Wow - I have not heard that... it is supposed to be a monitored test anyway, with someone to drive you home.
How to get 24 hours off without *really* going off is pretty straightforward - just skip the afternoon dose! That is how my doc says to do it. Then take your dose right after the test. So take your dose the day before the test at 7am, then skip, then you are off for 24 hours for the next day.
I don't have adrenals. I once did testing where I was off for 8 days with no steroids. I was afraid I was going to drop dead but I actually did pretty well - I was just really tired.
There are several people in a support group who suffered damage from being off HC for 24 hours. They are on seizure medication now....sad. I take HC 3 times a day and can't imagine doing without 2 doses. I am in excruciating pain sometimes even on 3 doses as I have damage from rapid withdrawal of steroids that has happened 3 times now thanks to the doctors....they sure know how to preserve their wealth. If we don't get better they continue to prosper.
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