In "weaning" or titrating down from corticosteroids, an uptick of muscle and joint pain is to be expected. With each downward titration, there is a corresponding decrease in serum cortisol. It is the lower level of serum cortisol which is causing your daughter more aches and pains. Cortisol is the body's principal anti-inflammatory agent.
The goal of the weaning process is to jump-start a lagging pituitary gland. With each downward titration of oral steroid, the serum cortisol level is lowered - which the pituitary gland should respond to by increasing its secretion of ACTH. Each gradual downward titration is geared toward nudging the pituitary gland to "re-awaken" and increase its functionality.
Your daughter is now 18 months post resection of her pituitary adenoma with continued low pituitary output. I would be advocating for a discussion of how/when is it decided that enough is enough. That is, how much longer is the endocrinologist suggesting that your daughter continue with the current strategy before committing to full corticosteroid replacement.
Not all pituitary glands are able to recover. The weaning process has an inherently low success rate.
Here's the deal . . . even if your daughter recovers pituitary function of ACTH secretion, the concern remains if the pituitary gland will be able to meet rapid upward demands for cortisol during times of stress. For the majority of people who do reclaim some level of ACTH production, the level of production is generally low/basic - meeting the body's needs for only basic and rudimentary daily needs. Any uptick in stress, and the pituitary falters. Unable to ramp up ACTH production.
At 18 months post surgery, the likelihood of further recovery of gland physiological functionality is lessening with each passing day. Optimal recovery is generally seen within the first year post-op.
I am on full corticosteroid replacement. There is a steep learning curve at first, coming to decide on a dosing and timing schedule, learning how and when to updose/stress dose. There is an art and a science to replacement dosing. But I feel infinitely better with full corticosteroid dosing than without. And my sense is that your daughter, too, will feel significantly better with sufficient daily cortisol coursing through her body.
Replacement dosing is just that. Replacement for what the body would be producing naturally if the pituitary gland was healthy and vibrant. I take 15 mg of hydrocortisone a day. You need not be concerned that the corticosteroid dosing will take your daughter back to a Cushing's existence.
Pituitary gland disorders are complicated and complex. But there remains every good reason to believe that a good quality of life is in your daughter's future.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)
Post Edited ((Seashell)) : 5/17/2017 7:54:49 AM (GMT-6)