@jsmedsrud MF is certainly a tricky disease! I’m never hungry, eat 3 meals a day so I don’t lose weight. Try my best not to eat any sugar and don’t eat a lot of carbs, because they make “C” grow. I’m fatigued, like you and just feel unwell—stomach and headaches most of the time. I’m encouraged to know you’ve had MF for ten years. Do you mind me asking your age? I’m 75 and remain active even though it’s difficult to exercise— Pilates 3 times a week and I walk 2 miles 3 or 4 times a week. Nice to touch base with you. MF is so rare—it’s nice to meet you! Susan

@jsmedsrud sooo many symptoms with MF. I was diagnosed with MF after 33 years with ET. On Hydra for maybe 4 years—no bad effects and felt fine until April 2025. Have mild headaches, very tired sometimes, cold feet, stomach aches, and have to eat a lot to keep from losing weight. And you don’t eat a lot and gain weight? So you’re onHydrea , with MF to lower your platelets? My platelets last month were 583,000. Hemoglobin 10. Wishing you well!!

@jsmedsrud, have you asked your Mayo team about your concern with unwanted weight gain? They may have suggestions.