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Can the adrenal gland be rebuilt after 30 years of prednisone use.
I was being treated with prednisone for crohn's disease for 33 years. I've been off it for 2 years but I am having some problems that may or not be related to discontinuing prednisone.
Joint pain (always)
muscle weakness (always)
Hypersensitivity to cool or cold temperatures (often)
Dehydration (often)
Facial dehydration (emaciated look) (almost always)
Severe diarrhea (daily and sometimes at night)
charley horses in my legs and feet
dizziness upon lying down and suddenly rising (occasional)
Hearing loss has worsened considerably in the last 2 years
low blood pressure to low normal blood pressure (often)
loss of appetite (often)
nausea
low immune function (have picked up a lot of things in the last 2 years)
exhaustion
Tired, need to sleep in afternoon (usually around 4 to 5 pm)
Depressed.
The doctors have run a few cortisol tests and ACTH stimulation tests and the tests do show I have low or borderline cortisol levels. Tests have been run in the morning and in the afternoon. The cortisol levels have been remaining low for the last several months but I guess they aren't low enough to warrant any help or treatment for me at this time?. The doctor said it may take years for my adrenal glands to return to normal. Do they always return to normal after long term prednisone use? How do they know they will? I would like to hear from those who have been treated with prednisone for several years ( 15 years and up) Have any of you weaned off and had trouble in the years following? Does it get better?
Joint pain (always)
muscle weakness (always)
Hypersensitivity to cool or cold temperatures (often)
Dehydration (often)
Facial dehydration (emaciated look) (almost always)
Severe diarrhea (daily and sometimes at night)
charley horses in my legs and feet
dizziness upon lying down and suddenly rising (occasional)
Hearing loss has worsened considerably in the last 2 years
low blood pressure to low normal blood pressure (often)
loss of appetite (often)
nausea
low immune function (have picked up a lot of things in the last 2 years)
exhaustion
Tired, need to sleep in afternoon (usually around 4 to 5 pm)
Depressed.
The doctors have run a few cortisol tests and ACTH stimulation tests and the tests do show I have low or borderline cortisol levels. Tests have been run in the morning and in the afternoon. The cortisol levels have been remaining low for the last several months but I guess they aren't low enough to warrant any help or treatment for me at this time?. The doctor said it may take years for my adrenal glands to return to normal. Do they always return to normal after long term prednisone use? How do they know they will? I would like to hear from those who have been treated with prednisone for several years ( 15 years and up) Have any of you weaned off and had trouble in the years following? Does it get better?
What were the results of the stim test - did you get a copy? What time was the stim test? It is such a special test never heard of a GP doing it, I know my GP would never touch it.
What about other tests? If he does not think of treating you for adrenals, has he looked for other reasons for the fatigue - vitamins, minerals etc?
Have you tried other specialists?
What about other tests? If he does not think of treating you for adrenals, has he looked for other reasons for the fatigue - vitamins, minerals etc?
Have you tried other specialists?
Thanks, They have done a ACTH stimulation test in the past, but for the last few tests I think it was just cortisol levels they are taken. Maybe because my borderlines are normal they don't think I need a stimulation test..
They did the testing first thing in the morning but since the lab doesn't open up until 8:30 am and by the time I get taken it's probably about 8:40 am
I was also told I can come in around before 5 pm so I do not believe the last few tests are ACTH tests.
They did the testing first thing in the morning but since the lab doesn't open up until 8:30 am and by the time I get taken it's probably about 8:40 am
I was also told I can come in around before 5 pm so I do not believe the last few tests are ACTH tests.
It is prudent to get copies and your GP should have his wrists slapped - you need a specialist.
Your GP may not even be testing correctly - you need a stim test! What time does your GP test you? Yes, borderline can be an issue - you don't know the test levels - I have found many a time I was told I was ok, and I was not.
Your GP may not even be testing correctly - you need a stim test! What time does your GP test you? Yes, borderline can be an issue - you don't know the test levels - I have found many a time I was told I was ok, and I was not.
Thank you for the responses rumpled and buckupnow. No, I do not get copies. I am being told that my cortisol levels are borderline so I accept it and walk away. The cortisol levels have been borderline since last year, but maybe even before that, the doctor did not check before then. Twice I have asked to be referred to a Endrocrinologist. The General doctor said "what for"? and then proceeded to tell me that I was already off the prednisone and do not need an endocrinologist!. Can borderline levels cause me to feel so blah?
buckupnow, could be wrong, but sounds like your adrenal glands may have already been weak and the use of short term prednisone and going off, caused your adrenals to crash.
buckupnow, could be wrong, but sounds like your adrenal glands may have already been weak and the use of short term prednisone and going off, caused your adrenals to crash.
I have secondary adrenal insufficiency from taking prednisone for 20days. It happened 4 years ago and I have to take hydrocortisone, Armour, and DHEA. My adrenal glands never returned to functioning after only 20days of prednisone. Tell everyone you know not to take steroids unless they absolutely need them to stay alive.
Did you happen to get copies of any of the testing?
Did they run any sodium or potassium?
No, adrenals may not return to normal after being suppressed that long. Doctors should treat steroids with the same care as narcotics - they have dangerous long term side effects and can effect a patient for the rest of their life! Some get AI, some Cushing's.
I would get copies of everything run, and I would go for another opinion. You may need a neuro-endo - a pituitary endo. You may need to hunt docs.
Leaving you with low cortisol is pretty dangerous. What are they thinking?
Did they run any sodium or potassium?
No, adrenals may not return to normal after being suppressed that long. Doctors should treat steroids with the same care as narcotics - they have dangerous long term side effects and can effect a patient for the rest of their life! Some get AI, some Cushing's.
I would get copies of everything run, and I would go for another opinion. You may need a neuro-endo - a pituitary endo. You may need to hunt docs.
Leaving you with low cortisol is pretty dangerous. What are they thinking?
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