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Anyone stop valcyte early?

Transplants | Last Active: Oct 20, 2023 | Replies (11)

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@roxanne12345

I had a kidney transplant a year ago, and had to take Valcyte ! for a few months. It decimated my White blood cells; specifically, the neutrophils, which are instrumental in fighting infection. I had to stay in the house all the time, and not see anyone. I quit Valcyte, and got a shot to get my WBC up again. It came up slowly. During that time, I became infected with BK virus. I had my meds changed again, increasing the Prednisone and dropping the Cellcept completely. I still have BK virus more than a year later. The Prednisone side effects are not pleasant, but at least I’m not on dialysis.

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Replies to "I had a kidney transplant a year ago, and had to take Valcyte ! for a..."

Hi @roxanne12345 😊
I have a similar story. I had CMV in my first year and then BK in my second year.
I assume that you are taking TAC or something with your Prednisone? What is your current increased dosage of Prednisone? After one year, is your BK viral load under 1000 in the blood? I found that my BK viral load really bounced around a lot until it came down. I am currently down at 65 BK viral load in the blood and 400,000 in the unit which is much better.
Which side effects are you experiencing with Prednisone?