@2gallonhabit

I appreciate your response.

It is not at all rare for patients taking Everolimus to develop anemia according to our UCLA hematologist/oncologist. You can however say it's uncommon for a patient taking such a small dose(as compared to cancer patients) to develop such severe anemic case. As with every drug, the tolerance is individual to each patient. Our UCLA hematologist/oncologist has many cancer patients also on this drug and he has seen many such anemic cases. In fact, the first thing he said was "I can tell you right now it's the Everolimus" that's causing the anemia. He ordered a bunch of tests to show consistency in bone marrow suppression(supposedly by Everolimus), including lab FLOW tests to show it's not leukemia, or lymphoma so that's a good thing. But the bone marrow biopsy will definitely show whether or not bone marrow is working properly.

Unfortuantely we were not checking hubby's CBC the same time we checked trough levels(usually monthly). We checked CBC 4 months after increasing the Everolimus dose, exactly the same period of when he was last seen by home neph(who said to increase dose to meet trough range). Perhaps hubby's anemia became (gradually)severe because we did not deal with it right away?? We will certainly talk to our neph about it at next office visit.

When our home neph reached out to Mayo Az, they totally discount Everolimus as the cause initially and was told to check for Parvo Virus. Home neph ordered Parvo PCR (from Quest) - negative, UCLA hematologist ordered Parvo too - also negative. Actually, the UCLA lab tested for both types of Parvo Viruses and both negative. UCLA hematologist said to get off Everolimus completely to recover from anemia!! This can take weeks or months. His next CBC test is coming Wed, needs to be done same day but prior to bone marrow biopsy.

We will discuss what to do about hubby's txplant medicine regiment at next office visit on 09/01. Hopefully by then hubby recovers from anemia. Meantime, the Everolimus is being replaced by prednisone and hubby continues Tacrolimus as his current txplant regimen. I would really like for hubby to get off prednisone if at all possible,

We were told by Mayo Az that my husband's donor was CMV positive, but I don't know if the deceased donor had BK, or Epstein-Barr - Mayo Az does not release much medical history of donors. Mayo Az had expected for my husband to deal with CMV but they did not think that it would recur over and over. Each time CMV cleared and the Myfortic dose adjusted back to hubby's the CMV would recur. After the ups and downs of dealing with CMV for about 6 months, Mayo Az finally switched to Everolimus.

Are you saying you think CMV, BK, Epstein-Barr negative in the donor is one of the requirements for Belatacept? You mentioned you got a live-donor, is this someone you know who you can get full medical history? Unfortunately Mayo Az will not disclose much medical history of our deceased donor(HIPPA??) - only to that patient was CMV positive.

Just wondering - since your move to Florida, is your transplant now under the care of a different team? If so, are you comfortable about the change? Side note: our home neph(he's not transplant neph) is interfacing with Mayo Az. We were told by Mayo Az to go thru home neph for all issues. I guess Mayo Az does not really want to deal directly with former transplant patients(beyond 3 years).