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Anyone experience multiple CMV resurgences post kidney transplant?
Hi everyone,
Anyone here who has experienced with multiple CMV resurgence? My husband got CMV about 3 months post transplant, donor was positive and he negative so it was a mismatched kidney. The first occurrence was due to the team increasing Valcyte to a maintenance dose, from 450mg to 900mg, 3 months post. Was told maintenance dose is commiserate with kidney function.
Soon after increase in Valcyte, labs showed WBC dropping and kept dropping until it was below 1, went from 5.1 to 0.7. So they held Myfortic, added prednisone but to no avail because WBC remained below 1. He got the Neupogen shots(3) which took a couple weeks to help recover WBC, went up to 6.1 at which time CMV became "undetected" again. So then the team slowly reintroduced back Myfortic, reduced Valcyte from 900mg to 450mg, prednisone,etc, basically putting in back in pre CMV medicine regiment. Well, his WBC started to go down again and when it got below a certain point, his CMV returned again, now at about 1800, first occurence was barely noticeable at 240. Myfortic likely lowered WBC I think.
So now second time around with higher CMV copies, the team seems like they are treating it like prior, reduce Myfortic, increase Valcyte, etc. I just don't see how this can resolve CMV because his WBCs will lower again(due to increase Valcyte) and pretty soon he'll be right back to below 1 and once again become neutropenic. It seems the culprit is WBC and if they can get it in the "sweet spot" his body will be able to keep CMV at "undetectable" level. But Valcyte unfortunately depletes hubby's WBC the higher the dose. According to nurse coordinator there is a fairly new med(Levtincity very $$$$) to treat CMV w/o WBCs depletion, but provider reviewed latest labs and said to continue to take meds as is and want to see labs next week. Other than CMV, all other labs component looks OK. Just frustrating to have to be taking a med which you know is causing CMV to emerge but at the same time it's supposed to help combat the virus. Anyone experience this and what did your team resolve? With the current treatment the team is applying, we are not confident that CMV will be controlled because of the never ending cycle of fluctuating WBCs. My husband is willing to try to new drug, esp when it has been effective in treating patients with similar issues re CMV and low WBCs. Just FYI, my husband bone marrow functions normal so the WBCs issues are all related to the meds he's currently taking. Would love to hear what your experience has been thank you for listening to my vent!
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I am struggling with this as well as a liver transplant patient. While I have no solutions to offer, I wanted to be able to follow this and respond as I get answers as well.
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1 ReactionHi @jp1023 😊
It is great to meet you! What is happening on your end? Are you having a low WBC while using Mycophenolate or Valcyte? Or does your CMV keep returning? Tell us a little about what's happening for you when you have a moment.
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2 Reactions@jp1023 Good Morning and Welcome to Connect.
I am a transplant recipient. I received my simultaneous liver and kidney transplant in 2009 at Mayo Rochester following a rapid and complicated journey. I have been taking Mycophenolate (Cellcept) and Tacrolimus for 13 years without any issues. I remember that I did take omeprazole in the beginning, but don't need it anymore. So it might be possible for your 'struggles' to resolve if you are a newly transplanted patient. Each patient is a unique entity with varying medical backgrounds and needs.
From your post, I am assuming that your struggles are possible related to your medications. Is that correct?
How long ago did you receive your liver transplant? Have you been in contact with your transplant team?
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2 ReactionsYes, I speak with my transplant team at least weekly. My transplant was 3 years ago. I have struggled to maintain weight and have also become a diabetic. I am a CMV mismatch and have A1AT. We keep working on getting the medication correct as it changes almost monthly. They stay on top of it and are a great asset to have. I feel very lucky to have such a great team! It’s frustrating to have to battle the diabetes while trying to get the other stuff under control as well. The diabetes is becoming more of a chore than the transplant is.
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3 ReactionsPlease see my response to @rosemarya . My CMV has been dormant until this year. It’s popped up twice now. It isn’t extremely high, but it’s enough of a nuisance to warrant medication. This year it seems just when something gets under control, another thing pops up. It’s been very trying, but I maintain a positive attitude and it’s been a great learning experience. I’ve been able to step up and become an excellent self-advocate.
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2 ReactionsHi @jp1023 😊
I am a two year post kidney transplant patient. I understand that you are a three year post liver transplant. I had active CMV at my one year mark and now have the BK virus. What meds and dosages are you currently taking? Has your dosage been reduced to fight the CMV?
I currently take 250mg Mycophenolate twice a day and 6mg Envarsus XR each day to fight the BK virus.
Are you taking Prednisone?
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1 ReactionCurrently I’m taking 360mg of mycophenolic acid twice a day with my tacro. I had been taking valcyte after my rejection in April, but then got the CMV after the fact in June- so no more valcyte and back to the mycophenalate. That made my stomach a mess so that’s why I’m taking the acid. I was scheduled to go off if it, but the CMV came back. Just had more bloodwork done and waiting for results to see the next step.
You have BK virus? I’m not sure I’ve heard of that. Is that related to just kidneys or something else?
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1 ReactionHi @jp1023 😊
Yes, I believe that BK virus is more of a problem for kidney transplant patients. I haven't seen another organ transplant patient speak about getting BK virus. I have seen liver, heart and kidney transplant patients speak about having and being treated for CMV. Me too!
When you had your experience with rejection in April, did you have any symptoms or was it found during a protocol biopsy? How did they treat it? Did you have an increase in your immune suppression and was it resolved pretty quickly?
This journey is definitely a learning experience. I agree with you!
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1 ReactionI had CMV today 11/3/2022 my doctor told me I'm at zero, so he stopped my Valcyte hallelujah.
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2 ReactionsCongrats @childofgod 😊
That's awesome news...CMV FREE! I am a two year post kidney transplant patient. Are you kidney or liver transplant?