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Get involved with a good support group. Understand that even specialist like endocrinologists may never seen a patient with Addison's disease and maybe relying on outdated treatment information. I've found much info that my third endo has been open to learning about through recent clinical trials and studies, such as circadian dosing (taking your steroids every 4-5 hours 4-5 times daily in decreasing amounts to more closely match the body's natural circadian production of cortisol) as opposed to the sixty year old practice of twice a day dosage. Also, insist on an emergency injectable steroid to have in case of illness or injury. Regardless of what endos say, you may not have time to make it to the ER to get treatment for the resulting adrenal crisis. Every clinical guideline for the treatment of Addison's (also known as primary adrenal insufficiency) states that this steroid must be given to patients along with directions on how and when to use it. This can literally mean the difference between life and death and I've personally witnessed death of Addison's sufferers who did not have this.
From Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline:
"4.5 We recommend that all patients should be equipped with a steroid emergency card and medical alert identification to inform health personnel of the need for increased glucocorticoid doses to avert or treat adrenal crisis and the need of immediate parenteral steroid treatment in the event of an emergency. (Ungraded best practice statement)
4.6 We recommend that every patient should be equipped with a glucocorticoid injection kit for emergency use and be educated on how to use it. (Ungraded best practice statement)
- See more at: http://press.endocrine.org/doi/10.1210/jc.2015-1710#sthash.Jd9j1Fkb.dpuf