@danab, @hello1234

My husband was on prednisone, Tac and Myfortic early on post transplant but was taken off of prednisone after 6 weeks. Then during month 3 was when he had CMV and during this time of battling CMV, they lowered the Myfortic and put him back on prednisone until Mayo switched Myfortic to Everolimus. He was already diabetic pre transplant and the prednisone spiked his blood sugar - even though he was eating a low carb diet. Then once prednisone was eliminated his blood sugar stabilized and he was able to control it much better.

While on prednisone, my husband appetite got bigger, not smaller. As a result he gained weight. Then after they took him off, his appetite and weight decreased, though he wights more now than pre-transplant.

I sure hope prednisone is temporarily because it is also a bone thinner and he was diagnosed with weak bones (on left hip) on dexa scan at Mayo during one of his annual check ups.

Our hematologist is very confident his current anemia is caused by Everolimus and needs to get off of it completely to recover from anemia. But Mayo still wants a bone marrow density done, even though all hemotologist labs show no sign of hemoloysis - labs are consistent with bone marrow supppression. It sounds like Mayo want to be certain that the bone marrow suppression is indeed being suppressed by Everolimus. Our hematologist called this past Friday and a bone biopsy has been scheduled in 2 weeks.

For now, the home neph says to get off of Everolimus completely and replace it with prednisone. Until a different transplant drug replaces the Everolimus, or if Mayo is Ok decreasing the Everolimus dose, hubby has to be on prednisone. At this time, it doesn't sound like Mayo is happy with a lower Everolimus dose, so likely have to switch to a different drug. Everolimus is the third drug that he has been switched by Mayo, so I don't know what other drugs his body can tolerate without it causing damage to his kidney!! A drug change or dose change has under Mayo's advice, our home neph cannot make that kind of decision. I'm very concerned about it.