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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 😊
Congrats on the news that the CMV is now undetectable for the third time! . ..And that hubby can discontinue the Valcyte! WIN- WIN
What reduced dosages of Myfortic and Tacronlimis is your husband currently taking? Before starting Valcyte for the CMV, did your husband have a low WBC from these two meds or are you pretty confident that the Valcyte is the culprit?
If it's the Valcyte, it just may take another week or so for his body to rebuild the WBC now that the Valcyte is gone. (I know there can be a delay of a week or so after stopping a med, for an adverse reaction to correct).
I think you are getting very close to a dental appointment. I wouldn't be overly concerned that the WBC bounced a little lower on one lab.
I think it will recover quickly now that Valcyte is stopped. And don't be overly concerned about a dental infection since your plan is to get an appointment asap once the WBC is 3.0.
I know how nerve-wracking this can be, but you are almost at the finish line!! CMV is gone and Valcyte is gone. Yeah! The 3.0 WBC will follow very soon.
You are a wonderful caretaker!!
😊❤😊
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1 Reaction@hello1234
WBC was about 4-5 range prior to taking Valcyte, also WBC decreased consistently whenever Valcyte dosage was increased so pretty sure that's the culprit. Provider says WBC may rebound on its own once Valcyte is discontinued. Let's hope so, we will know in another week!
Currently taking 2mg, 1mg Tac and 360 Myfortic 2x a day. Myfortic can also decrease WBC so am nervous about going back to 540mg 2x/day, which is normal dose.
How are you doing with BK virus. Have you nipped it in the butt? Is Mayo still following you? My friend says they followed her for another year after she was cleared of BK!!
Thank you for your inputs!!
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2 ReactionsHi @caretakermom 😊
That's good news! If your hubby was running with a WBC in the range of 4 to 5 when he wasn't taking Valcyte, then the removal of Valcyte should return his WBC to that range very soon. (The body just needs some time to clear the drug out of the system). I am very hopeful for the next labs.
Did your provider mention the timeline regarding restoring your husband's dosages back to what he was originally taking? Is there a possibility that they may hold at the reduced dosages for a while? I stayed at the reduced dosages after my CMV and I still got BK even at the lower levels of immune suppression! Now, my immune suppression has been lowered even more to beat the BK. So even at the CMV reduced dosages I was over-immune suppressed and got BK. Each patient is different and it takes a lot of tweaking to get the right cocktail of dosages/meds that avoids rejection but also avoids these constant opportunistic infections. It's definitely an on-going stressful process.
It's two months and I am still fighting my BK virus. My viral load has been coming down a little each week, but it's defintely still there. I heard it can take months to a year to finally clear BK.
Do you know about how long it took your friend to finally get rid of BK? After she cleared the virus, did they raise her immune suppression again or keep it reduced to try and avoid a relapse?
Thank you for the discussions!! I think it's super helpful to share experiences. Unless you're a transplant or caretaker, it's hard to understand these situations..."CMV, BK, Valcyte, reduced immune suppression, WBC, Tac, etc".... It's like we have our own transplant language!!! 😊
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3 ReactionsHi @hello1234, the nurse says they will increase Myfortic to original level when CMV is consistently undetected in the next few weeks. The reduced Myfortic level is 360mg and the original level is 540mg so basically 1 pill more in the am and pm. Hubby's trough level runs between 5-6 now and the nurse didn't say anything about upping it back to 6-8. She only mentioned increasing Myfortic. I was hoping she would call today but she sent a message via patient portal instead. Our nurse says it's more common for transplant patients to get CMV and BK in the first year but not in your case apparently. I'm hoping hubby will be lucky enough to be spared of it, cross finger! Glad to hear your BK is clearing!!
My friend said her BK lasted about 3-4 months. After BK went to zero, Mayo had her do labs once a month for about another year to monitor her BK. Her meds did eventually go back up to normal and I believe she said it didn't take too long before they restored
her original dosage. She never got CMV even though the donor was CMV positive(they were 2 baby kidneys but now have grown to adult size). She will be 3 year in Feb 2023.
Yes it definitely helps to talk about these transplant issues with someone or close to someone going thru it because they can relate to these issues. There are support groups for kidney transplants/dialysis on facebook that you can join if interested. I belong to 2 transplant groups now and previously I participated in a couple of other dialysis groups. These groups are usually private that you have to get permission from the moderator(s) to join. Whenever I have questions about something related to transplant I would post them in the group. This group is good to get feedbacks from Mayo Clinic patients.
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4 ReactionsThank you so much @caretakermom for your response regarding your friend's experience with the BK virus! It's extremely helpful and comforting to hear a success story like that. I am at my 2 month mark and I am hopeful that it clears in a month or two more like your friend. It's stressful and hard not to think about the virus on a daily basis.
Regarding Facebook, would you believe I am the only person on this earth that is not a member of Facebook? But once I became a transplant, I started to think that maybe the Facebook support groups would be helpful, but I didn't join once I found this Mayo Connect site. Maybe I will revisit the idea of joining Facebook too.
Regarding your hubby's meds, my Tac trough is also 6-8, and it normally comes in at 6. I take my Envarsus XR once a day in the morning. I take 6mg with my breakfast. I know the optimum way to take it is without food, but I need food with my meds to avoid stomach issues. I could probably take less Tac medication and achieve the trough range if I took it without food, but this schedule seems to be working for my body.
Please continue to keep me posted on your hubby and his WBC. I am very hopeful that at his current reduced meds and no Valcyte, he should be at 3.0 in a week or two. (and at the dentist!). I will keep you posted on my BK journey too. Thank you again for being such a good friend @caretakermom 😊
You are extremely knowledgeable and kind.... Your wonderful hubby is in very good hands!
Hi @hello1234, may I asked why how long you've been taking Envarsus XR? Were you ever on Tacrolymis and if so what was your dosage? Did you have a reaction to Tacrolymis? I've heard the extended version is a better drug because it's only taken once a day and doesn't cause shakiness. But it's also a lot more expensive. But to me though, I would rather take a better drug over cost, if it means better for my body!
Thank you for taking the time to answer my questions and giving valuable inputs
. I hope I can get in touch with you again with other Mayo/transplant related issues. Will it be OK for me to PM you whenever I have other questions?
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2 ReactionsHi @caretakermom 😊
Absolutely, feel free to PM anytime! And of course, I assume we will have many, many, many future discussions together as new challenges arrive for us on this transplant journey.
The great news is that I find this Mayo Connect Transplant Group of people to be incredibly supportive and smart!! Everyone has wonderful insights and is open to sharing their experiences.
I love to get "the team's" thoughts when I have a new concern. Don't hesitate to post a new discussion when things come up. Everyone normally jumps in to help.... It's terrific!! And getting lots of different experiences and varied advice can be very helpful.
Regarding my Tac, I started on long-acting Envarsus XR immediately after transplant. I was never offered a different Tacronlimis drug.
Maybe they gave it to me because my insurance plan from work covered it? I am not sure how they decide which Tac to give which patient but it may be whichever Tac drug that insurance company covers? It is convenient to take once a day in the morning. But I don't think there are any other medical advantages. When I started on it, it definitely gave me shaky hands. My local nephrologist always commented when he saw me hold anything. I think the shakes have improved, but I am still a little shaky. (Maybe now it's just stress that gives me shaky hands!) 😊 If the long-acting version is not covered by your insurance, I wouldn't think the "once a day" rather than twice a day would be worth any additional expense since your hubby needs to take the Myfortic twice a day anyway. Is your husband taking Envarsus, but just not the XR version?
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1 ReactionHi @hello1234, Was told by nurse that Mayo Clinic Az always start with Tacrolymus and Mycrophenolate Moeftil as the 2 immuno drugs for kidney transplant patient because they are considered "gold standard". They will switch to other drugs if patients develop issues. They had to switch my hubby to Myfortic because of digestive problems with Mycophenolate. Our insurance will cover anything provider prescribes, but authorization request is required for specialty drugs such as Mavyret which Mayo Clinic Az uses to treat Hep C. I asked about your Envarsus Xr because our LOCAL neph(in Calif) may switch hubby to Envarsus sometime in future because he believes it's a better drug.
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2 Reactions@caretakermom
Interesting!! I assumed that Envarsus was just another brand name for Tacronlimis since my drug monitoring labs are for Tacronlimis. I was started with Mycophenolate and Envarsus XR (Tacronlimis). I didn't realize that there is a difference between Tacronlimis and Envarsus since all my labs include monitoring my "Tacronlimis blood level". Maybe I am wrong and there are medical advantages to taking Envarsus instead of other versions of Tacronlimis like your husband's change to Myfortic instead Mycophenolate. It's the same family of drug, but there is an advantage to the coating to help with digestive problems, etc. It sounds like your local nephrologist may be a good source for the advantages of Envarsus over your current Tac drug. Now that you are saying this...., I remember that a friend of mine in Philadelphia was changed to Envarsus. I will reach out to her to find out why her nephrologist changed her to Envarsus. (I can't remember the reason that instigated the change).
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1 Reaction@caretakermom
You were absolutely correct! My friend told me that her doctor changed her from Tac to Envarsus to help with her tremors. So it sounds like there may be real medical advantages to switching. Is your hubby experiencing shakiness and tremors?... And maybe there are even more reasons that your local nephrologist likes Envarsus. I learned something today!