Hi! Is there anyone with Gilbert's Syndrome and on Imatinib or other TKI? I am on Imatinib 400mg since 2020. I have always had elevated bilirubin levels, therefore, I did testing for Gilbert's Syndrome a while ago since starting therapy. Recently I noticed I look more yellowish (just skin, not my eyes), especially inner palms of my hands. This has never happened to me before! However, I have experienced some upper right abdominal pain from time to time. Did endoscopy, ultrasound, all normal (except small gallbladder polyp which has stayed the same for the last 4 years), so no explanation for that. I went to my GP and she ordered some testing. My bilirubin was even more elevated than before, however, ALT and AST levels - all normal, no hepatitis etc. I also had slightly elevated LDH which has only happened at time of diagnosis. My abdominal ultrasound a month ago was all normal. My hematologist told "no change in therapy for now" and referred to hepatologist. However, hepatologist thinks my liver functions are fine and jaundice is because of Imatinib. Therefore, she wrote a recommendation to my hematologist to consider changing my meds. I will retest bloods in a week and then talk to my hematologist.
I am undetected for the last 9 month, MMR for 3 years. I have read here and on Facebook that doctors stop medication for a while or lessen the dosage in similar situations. I only had communication with a nurse about this situation which gave me instructions from the doctor, therefore, I don't know the reasoning behind not changing anything for now. I am just worried if jaundice is not serious symptom enough for some urgent intervention? I think my doctor is not sure if it's my Gilbert acting up or is this side effect of Imatinib.