Some Cushing’s patients experience difficulties during the time period when glucocorticoid (cortisone) replacement is being tapered back to physiological levels following pituitary or adrenal surgery. During Cushing’s, the normal pituitary or adrenal tissue shuts down production of ACTH or glucocorticoids. Following removal of a tumor, the non-tumorous tissue needs time to recover normal hormone output. The tapering process gives the normal tissue a chance to recover and provides the patient with necessary levels of glucocorticoids.
Some patients experience severe withdrawal symptoms during this time period, whereas others report few difficulties. Too rapid of a tapering process is dangerous and can result in trips to the emergency room due to extreme nausea, vomiting, and diarrhea. Other uncomfortable, but not medically dangerous symptoms of withdrawal include muscle and joint aches and pains and extreme fatigue. Some patients experience withdrawal symptoms even when appropriate protocols are followed. While on replacement medication, patients should wear a MedicAlert bracelet, carry a dexamethasone syringe in case of medical emergencies and be instructed on how to use it.
While each endocrinologist probably uses a different tapering procedure, it is generally accepted that only short acting glucocorticoids such as hydrocortisone (Cortef) are used in the final stages of weaning a patient off replacement. Each patient has a different tolerance to withdrawal, thus each patient may be treated differently depending. While each patient differs in their tolerance to tapering and endocrinologists differ in their approach, several examples are listed below.
Example Tapering Protocols
After Surgery: Prenisone, 10mg AM, 5 mg at dinner for 1-2 weeks
First Taper: At 1-2 weeks, cut to 5mg prednisone AM, 2.5 at dinner
Second Taper: At 1-2 months post op, change to 20 mg hydrocortisone, AM only
Testing for HPA Recovery: AM cortisol before medication >10ug/dL
After Surgery: 60-80 mg hydrocortisone for 2 weeks
First Taper: Decrease 10-20 mg every 10-14 days until reaching physiological replacement levels of 15-20 mg/day
Testing for HPA Recovery: ACTH Stimulation Test every 2 months
After Surgery: 200-300 mg/day hydrocortisone
First Taper: Starting the day after surgery, cut the dose in half every day until reaching 20 mg hydrocortisone
Second Taper: 6-8 weeks after reaching 20 mg., cut to 10 mg hydrocortisone, AM only
Testing for HPA Recovery: 1 month later, test for 8 AM cortisol > 10ug/dL, 2 weeks after normal cortisol, do an ACTH Stimulation Test. If > 20 ug/dL the patient can discontinue wearing the MedicAlert emblem and discard the emergency syringe.
Author: Karen Campbell, Director, CSRF (Summer, 2001)
(1) Carpenter, P., Endo 2000, Meet-the-Professor Handouts, The Endocrine Society, p. 51-57.
(2) Cook, D., The Cushing’s Newsletter, February, 1999.
(3) Orth, D., The Cushing’s Newsletter, Fall, 1996.