Cushing’s syndrome

@natrele welcome to Mayo Clinic Connect. I do not have Cushing’s syndrome. I don’t know what Korlym is. Hopefully other members will respond soon that have experience with Cushing’s syndrome and are familiar with Korlym. You are not alone.

Hi @natrele, I'm tagging fellow members like @j77 @astaingegerdm @jmb73 who have experience with Cushing's disease.

Natrele, have you started treatment with mifepristone (Korlym)? How is it working for you?

I took Korlym for a short time. Then I started feeling sick. I’m not taking now but doctor seems to think I need too. I might try a low dosage some day. I’m taking ozempic. Have lost 40 lbs.

Anyone else have experience with Cushing’s syndrome or Korlym?

@natrele
My daughter was diagnosed with Cushing’s some years ago. She was found to have a pituitary adenoma and had surgery to remove the small tumor. Surgery was successful and has not needed any further treatment.
Can you tell us more about how you were diagnosed and the origin of the elevated cortisol?

Bilateral adrenal glands hyperplasia adenomas. Found by chance during an mri.
Endo says it inoperable
On both glands without removing both and I don’t think that’s a good thing to do.

I’m sorry to hear that surgery isn’t an option. Are you being treated with Korlym now?

Korlym made me sick. I’m taking nothing now but will consider a lower dose depending on symptoms. I have no symptoms now except for weight gain and have recently lost 40 lbs. wheat was your experience and what were the symptoms?

My daughter was very sick when she was diagnosed- diabetes, hypertension, major weight gain.
After surgery her body slowly went back to normal- the absence of cortisol caused a lot of pain. She was on supplemental hydrocortisone until her body started to produce normal levels of cortisol.