Dear Michelle,

25mgs/day of hydro has been very good to me (it just says hydrocortisone on the bottle not cortef, it must be generic ?) This works for me and it might not for another person. Or someone else might feel prednisone is just right for them. I have no problem taking the hydrocortisone 3x/day because my mood overall is much more even. I’m calm, focused, and rational. I don’t fly off the handle like on the prednisone or get overly emotional as much now. Sure, I’ll get angry at times but it’s a normal ? type of anger and not something that is over blown. Every little thing used to bother me before and now it really doesn’t. I’m a sensitive person to begin with and I believe that the cortisones high lighten this to a degree.

When I was on the pred, I got the idea to try and take less providing the blood test came back good because I thought the less that I took that the less the side effects would be (bone density loss, cataracts, weight issues) but really my real hope was that less pred would help with the mood swings. 

I asked this woman Endo that I had if I could reduce the pred but she wouldn’t hear anything of that but saw fit to give me a patronizing pat on the shoulder. After coming in for a visit and bursting into tears over construction traffic, I begged her to reduce the pred again she said," no" and mocked me by saying, " Oh, are we weepy today?" The doctor is always right, the doctor knows best ...yeah...I FIRED HER. On to the next Endo and he agreed to change the pred from 10mg to 7.5mgs only after I screamed at him. The blood test was super but I still felt like I was losing my sanity. I was always jittery, anxious, and angry. I told the Endo this and I begged him for some help... anything...Valium...Vicadan but he wouldn’t give it to me and in hindsight I was glad about that. I found that drinking alcohol stopped the jitters and anxiety Plus it helped with anger over the clitorectomy and all those genital exams but I got to carried away and being drunk all the time doesn’t work. The Endos and residents thought I was an interesting agreeable teaching "case" that they were helping but their help only made me want to self destruct. So, I went to a shrink that said I was fine except for being angry with the medical establishment. I decided that I didn’t want to be like this and went searching for another Endo that as I was telling him about the clitorectomy interrupted me and said, "Do you smoke, I’m very sensitive and I’m going to have a headache all day and I need to wear a mask with you. " I don’t smoke but the night before I was in a bar drinking to get up enough nerve to deal with another Endo so maybe my purse did smell like smoke, I tried to be nice but here I was telling him about a clitorectomy which is hard enough to tell anyone about and he must interrupt and tell me his nose is  sensitive? I hit the ceiling with rage and being on the prednisone it wasn’t that hard to do. It actually felt good to scream at him because for years I was always so polite to Endos/residents  as they were all poking around in my genital area like it was silly putty. I’m lucky that Endo didn’t call the cops on me and I’m lucky that I didn’t wreck my car also. That’s the last Endo, I would want to see in the hospital if I came in with an adrenal crisis. "Vomiting ? that smells. My nose is very sensitive, I’ll be back as soon as I find a mask." On to the next Endo and prior to seeing this one I had read on an old CAH message board about a woman that switched to hydrocortiosne from prednisone and how much better she felt physically and mentally. I thought that this might be worth a try and I might bring it up to the new ENDO. The only thing that I wanted from the new Endo was that he would try to treat me as a human being and told him this while thinking that anything else was a bonus. He brought up changing to the hydro from the pred before I did. It was worth a try and if it didn’t work then I could always go back. My blood tests for the last two years on the hydro have been fine just like the pred only as an added bonus my moods are better with no jitters, anxiety, or panic attacks. I’m able to deal with the anger so much better because of the shrink and because I WANT TO. Being born with CAH and having external genitals that people don’t know what the heck you are isn’t a trauma but having the medical people poking around with their paws all over you is. I believe that the surgery did make the quality of my life better but it still is a brutal thing to go through to fit into this society.    My main reason for wanting to give hydro a try was that I started to like being angry with people and I would look for things to go off about. Humm... a rude bank teller that most people would care less about or just complain to her supervisor? nope, not me because I had to get the bank manager involved and close my accounts with him counting out my money as I told him what I thought of his employee or the time with the rude cashier that was being sarcastic about my purchases, I went and told the store manager exactly what I thought of his employee in a very dramatic and intense way. These people must of thought that I WAS A NUT CASE  and I’m not like that on the hydro. There is no exploding and I don’t have to make an effort not to do that like on the pred.     

WE should have the option of trying what type and dose of cortisone works to our best advantage. I’m sorry that I don’t know anything about the specific levels for the blood tests. My Endo has been very pleased with them but the next visit I’ll ask him what they are. 

Good Luck,

Aimee