Adrenal Insufficiency Community
Restoring HPA Function
About This Community:

This patient support community is for discussions relating to Adrenal Insufficiency.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Restoring HPA Function

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?
7 Comments Post a Comment
Blank
657231_tn?1390151580
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 hope you have an emergency kit too.
Blank
Avatar_f_tn
My directive is to wean down to 20mg if possible....then keep going if I can get down to 20mg total for the day.  Yes I do have 2 injection kits.  
Blank
Avatar_f_tn
ACTH stim test will only show if the pit is signaling the adrenals.....isn't there a crh test to show HPA function?
Blank
657231_tn?1390151580
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."
Blank
Avatar_f_tn
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.
Blank
657231_tn?1390151580
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.
Blank
Avatar_f_tn
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.  
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
Avatar_n_tn
Blank
Cowboylips commented on 7 Tips to Breathe Bet...
11 hrs ago
922048_tn?1387946184
Blank
Sherri90049 commented on Sherri90049's status
Aug 17
922048_tn?1387946184
Blank
Sherri90049 commented on photo
Aug 16
Top Thyroid Answerers
Avatar_m_tn
Blank
gimel
MI
168348_tn?1379360675
Blank
ChitChatNine
657231_tn?1390151580
Blank
rumpled
Northern, NJ
1139187_tn?1355710247
Blank
Brucergoldberg
dallas, TX
Avatar_f_tn
Blank
UmmYeahOk
Dallas, TX
Avatar_f_tn
Blank
helyanna
Finland
Adrenal Insufficiency Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Thyroid Answerers
Avatar_m_tn
Blank
gimel
MI
168348_tn?1379360675
Blank
ChitChatNine
657231_tn?1390151580
Blank
rumpled
Northern, NJ
1139187_tn?1355710247
Blank
Brucergoldberg
dallas, TX
Avatar_f_tn
Blank
UmmYeahOk
Dallas, TX
Avatar_f_tn
Blank
helyanna
Finland