I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up happening a few weeks earlier than I was scheduled to see them. My endocrinologist was stumped about all that had gone on at the hospital - so many tests and such severe symptoms that it seemed impossible that they found nothing that would explain what was going on. My hemolysis seemed to get a lot worse while I was off dapsone, my hemoglobin dropping below 10. Because of all this, she thought it was reasonable to stop the dapsone all together, as it may be a cause of the symptoms I have had, but wanted me to check with rheumatology first to see if they agreed. I also had labs to check that my ACTH came down, and my electrolytes were normal. I emailed my rheumatologist to see if he thought it was okay to stop the dapsone, and he asked me to come in the next day to discuss options. Immediately I knew I didn't have a lo
(Formerly known as Life with Cushing's)