Anyone experience multiple CMV resurgences post kidney transplant?

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.

@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!!

Hi @caretakermom 😊
My CMV viral load was 64,000, so 1844 is not bad. Is the viral load improving each week?
I agree with you and your sense of urgency that your husband's CMV and low WBC needs to be resolved in a way that avoids a recurrence.
There are two competing principles that are always running in a transplant situation. Rejection and Infection.
Rejection is the number one concern for the Transplant Department, especially in a new transplant. That's why in the beginning, immune suppression is run so high. They don't want your husband to reject.
Infection is the number one concern for the Infectious Disease Department, they work to prevent over-immune suppression and resolve the infection in a way to create antibodies and future protection. They don't want your husband to be sick.
You want BOTH departments working on resolving your husband's second bout of CMV and low WBC challenge.
On Monday, please ask your nurse coordinator for a referral to the ID Transplant Clinic so you can schedule a video consultation with a ID doctor asap. You are not hurting anyone's feelings by asking for a referral. ID is the best department to help drive this situation since it's the second time and he is fighting low WBC.
ID will probably recommend reduction of immune suppression to allow antibodies to form and they are the correct department to answer your questions about that new drug, is Valcyte the best drug and at what dosage, why your husband got CMV twice, concerns about the low WBC and what to do about it, CMV antibodies test after the CMV is resolved this time, etc. You will feel much more confident after that consultation.
I am followed at Mayo Florida. I was just diagnosed with BK virus so my immune suppression has been lowered again.
I hope this helps. Please post after you speak with ID and let us know what their recommendations are and how hubby is doing.
I know this is all nerve-wracking, but all will be well. Breathe.

Hi @hello1234, did you see and IDS at your request or Mayo's? It sounds like your IDS adjusted your immunosuppressant meds? My husband just got his 4 month follow up in Mayo in late July and Mayo said everything looks good, nothing remarkable. At Mayo Az, I don't think they refer patients with CMV to IDS. The nurse coordinator says it's common for patients to get CMV, sometimes multiple times, especially in the first year. She also said that the first time my hubby got it, his CVM load was a mere 240 so that is only a little bit compared to some patients who have hundreds of thousands and even in the millions. This time around is the real deal because it's relatively more than the last. I'm not sure what that meant because in my mind an infection is an infection, no matter how small it is. So far in the second/third week, CMV load has gotten worse, from 1144 to 1824, WBC went from 4.8 to 3.1 to 3.0 so it's slowly as Valcyte increased back to 900mg daily. Provider says no change in meds for now and do labs again next week, this coming Monday will be labs. I expect WBC to further drop, based on prev experience.
Your point about seeing an IDS is well taken. The IDS can make recommendations but the txplant team will be the ones who will adjust the meds. I will definitely bring up to nurse coordinator about possibly getting the IDS involved to address this issue if CMV does not resolve.
I'm so sorry you are going thru with BK virus now and I hope your team will help resolve soon. That's another issue that I'm not looking forward to is BK. Did you discover BK via your team or local neph? What do you suspect caused BK, was it due to UTIs? How often do you do labs now that you're 2 year post? When hubby goes back to local neph, pending CMV resolution, I'm going to ask for a standing lab order so that hubby can do labs at least 1x/month or whenever he feels something is off! I'm being pushy because local neph only wants to talk to hubby once every 3 months!!!
Thanks again for responding. I do better hearing from someone who has personally gone thru this and I appreciate very much your inputs.

Hi @caretakermom 😊
You are correct that Transplant controls immune suppression. Infectious Disease can only make recommendations. I had active CMV with bad symptoms and a much, much higher viral load than your husband is experiencing, so Transplant was agreeable to the suggestions made.
I agree with your idea to request a standing order from your local nephrologist for monthly labs instead of every 3 months with all this going on.
I caught my current BK virus during my routine labs for my local nephrologist. My BK is something that is latent from me or my donor I guess. (It has nothing to do with a UTI or something external.) Unfortunately, it's another virus like CMV that immune suppressed kidney transplant patients can get so it's tested for regularly. The solution is a reduction in immune suppression so my body can fight it. Today is the first day of my reduced dosage.
My understanding is it can take up to a year to finally resolve.

Hello everyone.
I don't know if this has been talked about yet, but there is a new drug for post-transplant CMV - marivabir.
I'm attaching the link that explains how the usual anti-virals for CMV in post-transplant can become ineffective.
Talk with your teams about this and see if it is right for you.
Hope this helps someone.

Take care.
Ellen
https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-common-type-post-transplant-infection-resistant-other-drugs

Hi @estrada53, our nurse coordinator mentioned this new drug, Levtincity better known as Maribivar. She suggested to to the provider that is an alternative to Valcyte because the new drug does NOT deplete WBCs. A few of the Mayo patients have had very successful outcome with it, according to nurse. At this time however, the provider is sticking with Valcyte but we are more than ready to try the new drug. One draw back about Maribivar is that it is extremely expensive and our insurance requires prior authorization. Thanks for chiming in.estrada53 w drug, Levtincity better known as Maribivar. She suggested to to the provider that is an alternative to Valcyte because the new drug does NOT deplete WBCs. At this time however, the provider is sticking with Valcyte but we are more than ready to try the new drug. One draw back about Maribivar is that it is extremely expensive and our insurance requires prior authorization. Thanks for chiming in.

@caretakermom
When you say provider, is that your Mayo transplant doctor or someone else?

@hello1234, when I say provider I mean the Mayo transplant team MD who reviews the labs.

Hi @hello1234, going back to our discussion in late August regard CMV antibodies test. Our Mayo Clinic provider recently ordered the igG CMV test(CMV antibodies). Google says anything greater than 1.1 is considered positive CMV antibodies. We'll be talking to Mayo Clinic soon but am just curious what your provider used as a reference range for positive CMV antibodies. Thanks! Hope to hear from you soon!