M1,
Well, when I was first diagnosed they had me on hydrocortisone pills. After taking this a while it made my hair fall out. I was getting to much as my body is small. I’m only 4’7 & in my 30’s. So, she put me on cortef. I was doing 20/10 mg for a bit. But, I am severe adrenalic and I constantly feel adrenal crisis coming on a lot. Which most of the time I can stop here at home. I got too used to stress dosing to much, and developed Cushings. So, this summer she took me down to 10/5mg. But, the tapering off took course over the summer under strict resting orders. I have gotten the morning dose down @ 10mg down to 5mg. I have gone into adrenal crisis before just lowering the dosage, so we had to do it very slowly. The lorazapam helped me out a lot, and I’m finding it helps me with the pain I constantly have on my right side. She gave me a very light dose of a water pill as I recently started to retain water on the right side of my body. She did not want to give it to me, because she was afraid I’d go into an adrenal crisis. I only take it every other day, or twice a week. I have noticed a difference because my wedding ring fits me better. I would like to see if I could go off the steroids for a bit under close monitored blood work, but I don’t think she’ll ok that. I go to Loyola Medical Center in Chicago and I love my doctor. She is a neat lady. She’ll even call me at home when I’m not feeling well to check on me. All the nurses do. I take a lot of meds for this. I’m on cortef, prevacid, inderal for mitral valve prolapse, compazine for vomitting, toradol for pain, wellbutrin, lorazapam, questron for missing gallbladder, and I have shots here at the house in case I go into an adrenal crisis. I forget what they are called my mind is blank. I have not had to use them since they were prescribed to me- Thank God. I have not been diagnosed as CAH, but have adrenal problems. It helps to talk to other people with adrenal problems knowing I’m not alone. I have an appointment soon and I’ll ask her about CAH. My Mom pointed it out to me and was questioning it. I never even knew about adrenal glands until I got ill. And I didn’t realize how many hormones the body produces. It’s all interesting. I just had my son tested for Addison’s disease and his cortisol levels cleared. I was so relieved because he was showing some signs of a possible hormone problem recently. But all came out clear and I’m thankful for that. Did you know President Kennedy had adrenal problems???? He had primary Addison’s disease and he was sick a lot. I was reading that he had a lot of adrenal crisis. You would think that since some one famous had it, there would be more programs out there. And some one would find a cure for people with adrenal problems, but I guess not. I talk a lot-sorry. Good to talk to you-Julie