I have simple virilizing CAH and I was on Prednisone for 32 years. It is my understanding that the choice of med has to do with the ability of ones body to keep the androgens supresses to a level in which the Endo feel is acceptable. When I was growing up the answer was give her more prednisone and more and more. It didn’t help any physical symtoms because I grew more excessive hair everywhere and the pred did a number on my mental attitude which I’ve worked hard to deal with (smile). I realized that the team of Endos couldn’t help me and when I moved to another state when I was 18, it seemed like a great time to tell the new endo that I was on a lower dose of pred than before and when I went for blood tests everything came back super. It still wasn’t helping my metal attitude and it was so tiring trying to rationalize that out all the time. I begged the Endo at the time for help... lower the dose ...give me a valuim ...anything but he dismissed me. Finally, after waiting two hours to see him after watching countless drug reps being escorted to his office I flipped out on him. Normally, I’m very much under control... you know never snap at your parents, bosses or especially doctors but this one wasn’t paying attention to what I had to say about how the pred made me feel so I let it rip and it felt good. I had no problem getting the dose of pred lowered after that and the blood tests all came back super.

I wanted to try and even lower dose and I realized that maybe I could give hydrocortisone a try. After a hospital stay for something else and new insurance, I set out to hire a new endocrinologist.

The first one wasn’t interested in anything but yes or no answer and would give me a dirty look if I tried to elaborate. What if you have something to say that doesn’t fit into a yes or no format? Even cops let you speak your peace.

The second one was an insensitive shmuck, to interupt me as I’m telling him that I had a clitoridectomy and ask if I smoke because and I qoute ," Not to minimize what you are saying BUT  you’re going to give me a headache all day because I’m very sensitive to smoke." Yeah and I’m very sensitive to telling Endos that I’ve had a clitoridectomy and I don’t smoke but for all you know I could of been in a smoke filled bar drinking shots of whiskey just so I could get up the nerve to come and see you. I went back to that Endo and tried to tell him how it was to have that surgery and how cruel he was to interupt me in that manner while I was taking about the surgery. He could of cared less and it took all he could do to stiffle his laughter. He is only one of two Endos that are on call at the local hospital and I am scared  that GOD forbide I’m sick or get in a car wreck and go into an adrenal crisis and he is on call at there...ooooo the vomiting ...the smell...gives me a headache all day, I need my mask ...yeah ...that’s the person you want going to bat for your life. I’ll take my chances with the ER docs.

By the time I got to the third Endo ..well.. all I wanted was for him to like a human being and offer me some respect. I lucked out with him (I think the other endo gave him a run down of who I was) and as a plus without me asking him the first thing he did was take me off the prednisone and give me perscription for the hydrocortisone which has less side effects and is more natural.  The blood tests are find and I’m a much more rational, resonable individual on the hydro and I don’t have to talk myself into being that way. 

I’ve rambled on and on ...sorry but my points about the difference in the meds are tucked in there somewhere. Every B O D Y  is different and we all just have to see what works for us and hopefully we have an Endo that is confident to let us do it and having one that is a good listener helps also. You can always try something new and you can always go back if it doesn’t work.  

Aimee