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Anyone experience multiple CMV resurgences post kidney transplant?
Transplants | Last Active: Dec 29, 2022 | Replies (107)Comment receiving replies
Hi @caretakermom 😊
I am a two year post kidney transplant patient. Like your husband, I was CMV negative and my donor was CMV positive. I took 6 months of 900mg Valcyte each day to prevent CMV. On month 8, I got CMV. My Cellcept was reduced to 500mg bid from 1000mg bid and I started 900mg Valcyte twice a day. I remember all of my blood numbers were super wacky while I had active CMV. Matter of fact, even my Tacronlimis blood levels went up, my RBC went down, my liver enzymes went up, etc. It was a very concerning time. It took 6 weeks to finally resolve and then I stopped Valcyte and haven't taken it again. I have been tested for CMV antibodies and I thankfully have antibodies now. Because my Cellcept was reduced, my immune system was able to fight the CMV and create antibodies, which is what we want.
Are you a Mayo patient? Have you received a video consultation with the Infectious Disease Transplant Clinic for CMV? Maybe ask your transplant coordinator for a referral. They are wonderful! Do you know why after the CMV was resolved, your husband was still taking Valcyte? Was the Myfortic restored to full dose or kept at the reduced dosage? It may be that your husband is over-immune suppressed at the full dose and the reduced dosage is the correct dose for him moving forward. I am not a doctor. These are just some of my thoughts from my own experience with CMV that I hope may help.
Replies to "Hi @caretakermom 😊 I am a two year post kidney transplant patient. Like your husband, I..."
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@hello1234, thanks for chiming in.
My husband got his kidney transplant from Mayo Az this past March. After CMV was resolved late July, they reduced Valcyte from 450 mg bid to 450mg daily - kept him on Valcyte because still within the first 6 months post transplant. Mayo Az's protocol is for patients to take Valcyte maintenance dose the first 6 months. His Myfortic was restored to the full dose (540mg), it was held while treating CMV. I agree with you that the Myfortic dose may be too strong(too immunosuppressed) because WBC dropped. Valcyte also causes a drop in WBC. Prior to getting CMV, he was only taking 450mg Valcyte 3x a week(vs. daily) but as soon as they changed it to daily is when CMV emerged.
This second time around though, CMV load is much much higher. Latest lab shows 1844. I don't think he can take more than 900mg of Valcyte daily because it would completely deplete his WBC. Without WBC there is no way for his body to fight it off. Perhaps another anti-viral med would work better for him as the nurse coordinator suggested, but his provider said to continue with current meds, no change for now.
Did your team order the CMV antibody test for you? That would be a good thing to get after his CMV resolves. Are you still being followed by Mayo? From which Mayo did you get your transplant? We are back home now in California but Mayo took over maintenance care from our local neph when hubby got CMV. Unfortunately, there is no communications between local neph and the Mayo txplant team. I'm the intermediary and sometimes we get conflicting information!!!
I'm hoping the txplant team will help him resolve CMV this time around. This means getting his medication dose just right and it may take a while unfortunately. If they do not find a solution, my husband will be in an never ending cycle of CMV on/off!!