Hi @hello1234,

Hubby's most recent urinalysis shows protein is present. I immediately contacted nurse and she forwarded labs to the PA that day. Unfortunately, the PA didn't look at the urinalysis carefully and overlooked it. I told nurse to please forward to an MD and today I heard back. Took an extra day else I would have had hubby go in to get labs done today!! They ordered a protein creatinine ration lab that will measure how much protein is present in urine. Hubby's going in to get his weekly labs drawn tomorrow, along with the new order. Proteinura is the one of side effects that I dreaded and with good reasons. One other thing to check too is lipids but that's not for another 3 weeks. Another side effect is hyperlipidemia and the nurse was telling me she has seen triglyceride going thru the roof!! As of now, the only side effect hubby has is the proteinuria, we think it's the result of Everolimus. No mouth sores or pneumonitis. Not sure what they can do to stop it or minimize protein leakage. The plus side is CMV is undetected so it seems to work against CMV. You get rid of one issue then another one arises!!!

I'm hoping they can perhaps switch him back to Myfortic at a lower dose than pre-CMV, 540mg bid was too suppressive. Maybe they can do 360 mg bid but the nurse keeps saying that's not enough, but perhaps it will be enough FOR HUBBY. Everyone metabolizes medication differently so I'm not sure that they can generalize and say everyone needs to be on at least 540mg+ Myfortic!! The nurse says standard dose for Myfortic is 720mg bid.
our local neph was telling us that he has many patients that are on just 360mg Myfortic.

Hubby's creatinine is holding stable as are his other labs. His BUN tends to run higher but that's normal for him. Everything else looks good except for the protein present in urine. Lipids labs in another 3 weeks.

My hubby actually looks and feels a lot better since getting transplanted, probably because he is now off Valcyte which made him very lethargic! A big disappointment is the proteinuria and from talking to the nurse, she has no idea how this situation will be resolved. Sounds like there is easy answer!!

I'm very worried about hubby's kidney. I don't want any more damage done and at this point want him be off Everolimus. I'm not sure what other alternatives the team has for hubby. The nurse was saying Sirolimus but that is the same drug family as Everolimus which is still relatively new(but supposed to be better than Sirolimus)!!
Hubby has a video appointment with Mayo in 2 weeks but may have to see them sooner.

Never had protein in urine until after taking new drug so pretty sure new drug is the culprit!! I also spoke to someone in the facebook group and he is in same situation. His team took take him off Myfortic because it was overly suppressive. Put him on Tac and Everolimus and he says his creatinine has been climbing and it's currently at 2!! They are having him do an allosure test.