Dear Folks, I have adult onset 11 Beta Hydroxylase deficiency. I have been very ill and the dexamethason my endocrinologist has me on does not seem to be improving my symptoms. I have been going down hill for five years and now I am so ill all the time I feel like I am dying. I have been told that all forms of CAH are treated in similar ways with cortsone or dexamethason but I am beginning to wonder if this really works for people with 11 Beta hydroxylase deficiency because I am not improving. I have seen a number of endocrinologists who have treated adults with other forms of CAH but not 11 beta hydroxylase deficiency. Since I am not improving on the dexamethason and potassium I am trying to find an endocrinologist to consult with who has treated adult onset 11 beta hydroxylase deficiency and may be familiar with other treatment methods that work better for people like myself with this form of CAH. So if any of you are inclined could you ask your endocrinologists if they have ever had any experience treating an adult with 11 beta hydroxylase deficiency and if so how I can contact them for more help. I am also wondering if any of you that have raised children with 11 B. hydroxylase deficiency have children who are now adults that for the most part feel well on their treatments. Thanks for the help! Rose