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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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Hi @caretakermom 😊
Happy Holidays! I hope all going well. When you have a free moment, please give an update on your hubby. Did he decide to start the Sirolimus? If so, how are things going? I am looking forward to hearing how you and your hubby are doing!
Hi @hello1234,
Happy Holidays to you! I'm sorry I haven't responded sooner I have been very busy the previous few weeks leading up to Xmas.
So we met with a different Mayo Clinic transplant MD the second time(early Dec) and she suggested that hubby take Everolimus instead of Sirolimus, because Everolimus has less side effects says the MD. Everolimus is generic for Zotress, but it's still very very expensive and needs prior authorization for insurance coverage. I was totally caught off guard when she recommended Everolimus instead of Sirolimus(which the first MD recommended!!). Hubby is supposed to check back with Mayo 4 weeks after taking Everolimus. They also want him to do a lipids panel test after 6 weeks because because Everolimus can cause hyperlipidemia. He is continuing to do weekly labs so they can monitor his TAC, Everolimus levels as well as CMV status which so far has been undetected. The 4 week appointment has already been scheduled and will be with a PA, who is one of the providers we saw during the 5-6 week stay at Mayo Az post transplant.
Since starting Everolimus, Valcyte was stopped and my husband looks more alert and has a bit more energy. Valcyte treatment dose made him tired, pale and listless!! They are also keeping an eye on his WBC because it dropped a little when the first MD increased prednisone from 5mg to 10mg. But since starting Everolimus, prednisone was reduced to 5mg and WBC has increased a little in the latest labs.
Everolimus and Tacrolimus trough levels are monitored at each weekly lab. We are at a point similar to the first few weeks after transplant when the providers adjusted his immuno meds. Currently Mayo Az wants to monitor hubby closely with weekly labs and periodic follow up with a provider via telehealth. So I've cancelled hubby's local neph appointment, which I will resume when Mayo stops monitoring hubby. He is now about 9-1/2 months post transplant, with the previous 6 months mostly dealing with resurgent CMV! Hopefully the new drug will work out and combat CMV for good! His one year follow up is scheduled for sometime in Feb and March 2023.
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3 ReactionsHi @caretakermom 😊
I am so happy to hear from you! It sounds like an excellent visit with the new MD that suggested Everolimus instead of Sirolimus to avoid certain side effects. I hope once they adjust to the proper dosage the medication is not too crazy expensive. What target range are they aiming for with hubby's Tacrolimis and Everolimus? My target range for Tac is currently 6 to 8. I take 6mg Envarsus XR. But lately, the numbers have been anywhere between 5 and 7. I think the big difference may be what I eat for breakfast. I take my meds with food to avoid stomach upset but I think it may be changing my numbers. Does hubby take his meds with food or an empty stomach?
I am very hopeful that this new med change will be the final end to hubby's CMV recurrences for good!
Hi @hello1234, you're taking both Tacrolimus and Envarsus XR? Usually it's one or the other. You're off of Myfortic completely?
The target range for Tac is 5-7 and Everolimus 3-5, with a combined goal of 10-12. Hubby's Tac level is off too since taking Everolimus. They are in process of adjusting his meds, I'm hoping this will not take too long before it reaches therapeutic level. He takes his morning pills right before breakfast but provider says Tac level is affected by diet from previous night. So not uncommon to see it jump from 5 - 7 or vice versa. Currently his Tac level is really low so I'm thinking Everolimus may have affect on Tac trough level.
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2 ReactionsHi @caretakermom 😊
I am taking Cellcept and Envarsus XR (Tacrolimis). Your husband is taking just Tacrolimis and Everolimus and no Myfortic, right? Is that the only two immune suppression meds he currently is taking? Since they are monitoring hubby every week, I am sure they will get go the therapeutic levels of both meds pretty quickly. It's great that they have a blood test for Everolimus levels too. I have never seen a blood test for Myfortic or Cellcept.
Do you happen to know what about the meal the previous night affects the Tacrolimis level? @estrada53 mentioned that too. Is it the quantity of food we eat for dinner or specific foods that lessen the Tac level? I assumed it was the quantity of food I ate with the pills in the morning, not the food at dinner but this is the second time I have heard that it's the dinner eaten the night before the labs that may affect the morning labs. Thanks for the great discussion!
Hi @hello1234, there is a Myfortic lab that Mayo ordered for the 4 and 8 month follow up. It's labeled as "Mycophenolate Acid"(for Myfortic) but I do not really know how to interpret results.
According to the provider, it's not the amount of food but the type of food eaten the night before affects Tac level. Unfortunately, when we get the lab results which is usually 4 or 5 days after blood draw, it's difficult to go back to figure out what was eaten the day before labs! But from now on I'll have to keep track of what his dinner is the night prior to lab work. Tac level can go up or down even though no change in dose. Sometimes I wonder if the lab result is error?? My hubby is currently taking Tacrolimus, Everolimus, and prednisone. Once he reaches therapeutic level the steroid will be dropped.
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3 ReactionsHi @caretakermom 😊
That's very interesting about the type of food eaten at dinner affecting the morning Tac labs. (If you are able to unlock the mystery of which foods cause the increase or decrease please let me know. I would love that info). You are correct that without keeping a food journal, there is no way to remember the meal you had a week or two later when you actually receive the Tac results back.
It will be nice when hubby is up to the therapeutic levels and he can ditch the prednisone.
It was wonderful catching up with you and hearing about the progress that has been made to stop the recurring CMV episodes for your husband!
It's very helpful and very comforting to me to know there are solutions to these infection challenges that we all face as transplants. I had both CMV and now trying to get rid of BK.
Happy New Year to you and your hubby! And please keep me posted on how you are both doing. It will be nice to celebrate "therapeutic levels" with you! 🎊🎉🎊🎉