Very low end of normal lab values for cortisol and ACTH after stopping

Me, too @marymckeith, fatigue but no reason for it except I haven't bounced back to how I felt before PMR. All tests say I am in good health otherwise. I asked if it was chronic fatigue syndrome and my doctor said that was a "garbage syndrome" implying it actually doesn't exist, but he had no suggestion as to what I was dealing with.

@edwardh Thanks so much for commenting. It makes me feel better that I am not the only one. Because I have no other health problems and I look healthy I don’t think doctors or anyone else takes the fatigue seriously. I have told them that the weakness is profound and is seriously affecting my quality of life. They do admit that PMR and RA make you tired because your body is constantly fighting against itself. Thanks again.

I think a low cortisol is expected after months on prednisone. It potentially is a serious problem but probably not something that’s worth worrying about. Other than staying off prednisone to give your adrenals a chance to recover, there isn’t much else you can do. A medical alert bracelet should be worn by anyone that is on prednisone. An adrenal crisis can happen to people while they are still on prednisone.

I had a low cortisol level after being on prednisone for many years. Overwhelming fatigue was my main symptom. I needed to stay on 3 mg of prednisone until my cortisol level improved. It took months until my cortisol level was at an adequate level to allow me to taper off prednisone. I avoided having a flare because Actemra controlled my PMR symptoms.

My fatigue is now extreme the last 2 days. My last dose of prednisone was one week ago today. My endocrinologist said as long as my blood pressure doesn’t get too low , I don’t have nausea and vomiting, or develop an acute illness, it’s okay to stay off of prednisone. She also said it’s highly unlikely that a cortisol level of 10 will lead to adrenal insufficiency however no test is 100 % accurate. I’m paraphrasing what she said. Right now my fatigue and the body aches are the worst I’ve ever had but I’m also having sinus problems so I’m wondering if I’ve caught a virus. Even so, I’ve never experienced fatigue this sever; I feel like I don’t have enough energy to take the next breath. Oh and she also said it will just take time for symptoms to get better. I have to say I’m still not too reassured that I’m not experiencing adrenal insufficiency however.