@geomusser

Hi @geomusser ,

I can tell you that our UCLA hematologist/oncologist has a lot of cancer patients on Everolimus though the dose they take are much higher than the transplant patients, he says he has seen many such cases of anemia. He is not happy that my husband is on this drug.
Hematologist is running all sorts of blood tests to test if it could be some other contributing factors. We are waiting for the bone marrow biospsy results to see what it shows - would should Parvovirus B19 infection if present, which can be the cause of anemia. So our home neph ordered Parvovirus B19 PCR and tested negative. UCLA hematologist also ordered PCR(did igG, and igM) and again it's negative but the bone marrow biopsy results will give the definitive result. It's a mystery to me that that such small dose of Everolimus - i mean small, can cause such havoc in one's body. That tells you that one size DOES NOT fits ala
Hubby has been on Everolimus for a little over 3.5 years along with Tacrolimus, no prednisone. He could not take CellCept because it caused digestive issues. Mayo Az changed it to Myfortic but he kept getting CMV recurrence, because over-immuned. Finally they switched to Everolimus in Nov 2022. Hubby's labs were looking good up until this March, when he had to increase dose to meet trough range. That's when his CBC/anemia developed I believe. The small increase dose caused mayhem in his CBC labs, his ferratin/vitamin is fine. I hope the hematologist will give an ESA shot to him at next office visit. He is temporarily off Everolimus(replaced with prednisone) until he recovers from anemia. His home/neph(with consultation with Mayo Az) will then decide how to move forward. I'm hoping they'll allow him to stay with Everolimus but target a lower trough range but that'll be up to the Mayo Az transplant team. Not sure at this point what other drugs he can take in place of Everolimus.
Are you sure your wife is take 25mg, and not 2.5 mg, of Carvedilol?? My husband takes 6.25mg carvedilol BID.