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Addison's Disease Message Board

Addison's Disease Board Index

My daughter was diagnosed in 2009 with Addison's. Was on Hydrocortisone and Florinef without any problems and only a very few ER visits for crisis situations. HOWEVER, since last year she has been miserable with all the symptoms of Addison's (fatigue, daily nausea/vomiting, headache, loss of appetite, tired). She has been stress dosed, hospitalized twice since 1/1/16, and still has daily headache and nausea. Her last two ACTH levels (taken at different labs) was over 2,000 and her plasma renin has been 15-20. We have had three physicians INSIST she is not taking her medicine, which is NOT TRUE. We have switched doctors. She is also seeing a neurologist who has taken her off all pain relieves (Tylenol, Ibuprofen, etc.) because of overuse for her headache (which I think is strictly due to Addison's). She is currently 15 years old and this past school year has had to give up many of her activities because she just cannot do them. Just getting a shower is a chore. She is currently on 5 mg of Prednisone (7 a.m. and 7 p.m.), 0.25 mg of Florinef (.15 in a.m. and 0.1 in p.m.), vitamin D, vitamin B3 (riboflavin), Co-Q-10, multivitamin, and Elavil (from neurologist for headaches). Does anyone have any suggestion, help, ideas. I have watched my child suffer for a year and it feels like we are hitting our heads up against a wall and getting no help at all.

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