Katie, I too wondered what going off the meds would hurt for me. Well, I was fine for a while (what I didn't know was that my adrenals were partially suppressed from taking steroids)and then after being off of them for about 3 years I encountered a lot of stress when I married and 2 days after the wedding started on an excruciating headache, throwing up during the night and was too weak to make it back to bed from the bathroom. I lay down on the bathroom floor and stayed there all night. My husband found me there the next morning (I went to the far bathroom because I didn't want to wake him up with my retching - how stupid)and called his doctor(by then I was too weak to walk and he had to carry me to the car). I threw up again in the parking lot at the doctor's. The doctor immediately had me hospitalized. I mentioned that I had CAH but hadn't taken medication for it for several years. Well at the hospital the doctor decided it looked like meningitis as I was still throwing up and had the horrible headache and back pain and I was treated as such. I spent 4 days there and felt better with the Dexamethsone they gave me. I didn't get the connection though until I had another crisis 3 years later. This 2nd time I had been taking .25 of dexamethasone faithfully - but evidently it wasn't enough. I had some physical stress along with the emotional stress of working, going to school and being a single parent (I had gotten divorced) and I again ended up in the hospital for 4 days. After that course of "meningitis" I got smart, had my levels checked (17-OHP was 2200 - sky high for an adult)and changed my dosage to .5 of Dex. Things change as you get older. You tire sooner than you did when you were younger (though I was 33, and 36 years old when these crises happened) Currently I am on .625 of Dex and feel better than I have in years. The anxiety is pretty much gone, I don't have muscle aches and pains, no headaches, no problems with facial hair anymore, no acne anymore. Granted now my adrenals are totally suppressed, and I HAVE to take my meds every day, but I don't have a lot of the side effects that I did. So PLEASE, take your meds. If one steroid doesn't work for you, try another. I personally can't take Cortef or Prednisone but the Dex works well for me. The other thing is try to get off of sugar. I found especially if I had ice cream or something sweet at night (when your cortisol is lowest) I would feel terrible and get shaky, anxious, sleep bad, etc. A lot of us have a much better time if we are on a low carbohydrate food plan. Those with CAH on steroids don't seem to metabolize the carbohydrates as well and it just goes on as fat and makes you feel tired and yucky too. Sorry this is so long. E-mail me and we can talk some more. Susan A.