Learning the day to day management of Addison’s is hard. It is even harder when the symptoms you are feeling could also be from APS, and a wrong INR level.
Once study on how much Hydrocortisone you should take states:
Data from an international survey conducted in 2003 across the UK, Canada, Australia and New Zealand (N = 850), shows that primary adrenal patients consistently report ongoing symptoms typically associated with steroid insufficiency. For example, nearly two-thirds experience fatigue regularly or almost always. One-quarter experience salt cravings and muscle weakness this frequently. Nearly one in five reported ongoing hyperpigmentation and 10% ongoing nausea. One-third said their condition affected their ability to participate in social activities.
Despite this, a significant proportion of patients appear to be mildly over-medicated. We derived Body Surface Area for survey respondents and identified a mean dose of 13.9mg per metre squared for men, and a mean dose of 14.3mg per metre squared for women, where an ideal dose would be 10 – 12mg per metre squared.
Derek’s Endocrinologist has said that according to his Height, Weight and Age, he should be taking 10mg morning / 5mg lunch time / 5mg at 4.00 pm. This is based on the above recommendations. However, each time he has reduced his intake to that level he has ended up admitted to hospital for fear he was about to have an Adrenal Crisis. On 10 / 7.5 / 5 he functioned enough to work, but not to take himself TO work and back, or to do anything around the house. The weekends were spent either stress dosing (taking an extra 5, 10 or 20 mg) or resting.
He is now back to taking 10 / 10 / 5 daily for a while, until we can get assistance with getting to work. He will then try reducing it by 2.5. It is a very fine balance. 2.5 doesn’t seem much, but it has a definite affect on how Derek copes day to day. It seems to give him that little bit of of reserve in the mornings.
We will keep a close eye on things.
This is not a recommendation regarding doses for other Addisonian’s , this is just what Derek finds works for himself.