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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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@hello1234,
The colonoscopy is routine checkup, no major issues but the team wants him to have regular check up especially post transplant. His 3 year is due this December, though they may want him to have one annually. The CMV is from the donor kidney, mismatched kidney with donor positive and patient negative. So the CMV was definitely expected by the team, just didn't expect it to be so persistent. At Mayo Az, CMV(resulting from kidney transplant) is normally treated and monitored by the kidney transplant team and they are the ones who will adjust the immuno suppressant drugs. We have a 8-month checkup coming up but it will be a virtual appointment.
I have done the Cologuard before, it's definitely an option if a colonoscopy is not possible. We will discuss with team at appointment. Thank you for your inputs!
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5 Reactions@caretakermom 😊
Please keep us posted after hubby's 8 month check up visit!
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1 ReactionThank you, my doctor did say there is a chance it can come back, but I don't claim that, I claim healing from JESUS CHRIST . Faith has kept me alive Christ works through people if they allow him. This is my own personal belief.
@hello1234, we recently had a video appointment 8 month follow up. Transplant doctor is thinking about switching from Myfortic to Sirolimus. The reason for the switch comes down to my hubby's immune system is unable to fight the CMV given the current immuno suppressant medications. Doctor says multiple CMV recurrence(back to back) can cause the virus to be resistant to Valcyte. To avoid CMV resistance means having to switch up meds. Sirolimus has antiviral advantage, thus more suitable for hubby given that he has "hard to treat" CMV. Doctor wants to wait for 3-4 undetected CMV labs before making the meds changes. So far, we have had 2 undetected CMV lab results. He went over the common side effects which can lead to a host of other health issues!
At this point I'm worried about rejections because my hubby is only on Tacrolimus and prednisone. The sooner he gets on another more suitable immuno suppressant drug, the better! We can only hope Sirolimus works and does not cause any side effects!! Transplant doctor wants to meet again in 2 weeks. To say I'm worry is an understatement!! Hope this all makes sense.
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2 ReactionsGood morning @caretakermom 😊
I am so happy to hear from you! It sounds like you met with an excellent transplant doctor. I am thrilled that he is acting proactively to avoid a resistant version of CMV.
I have seen many posts on Connect over the years with transplant patients successfully and happily on Sirolimus. (You can always post a discussion asking about patient experience with Sirolimus).
Don't be overly concerned about rejection while hubby is on Tacronlimis and Prednisone. The transplant doctor is not overly concerned during this period because Tacronlimis is a very powerful immune suppression, especially when it's married with Prednisone. I am currently on Tacronlimis with a low dose of Cellcept because I am fighting the BK virus. If they need to stop the Cellcept, I also will be on Tacronlimis and Prednisone. This is normal protocol for handling these opportunistic infections like CMV and BK and highly effective, so don't be overly concerned.
It sounds like they have an excellent plan and you only have one more "undetected" CMV test to start implementing it!
I am super happy to hear that your transplant doctor is changing the med "cocktail" to avoid these recurring CMV infections in the future. (I thought you may have to speak with an Infectious Disease doctor to get these recurring infections resolved), but your Transplant doctor was on it....I love it!! Please post when hubby starts his Sirolimus and let us know how he's doing. @caretakermom How are you holding up? Are you taking care of yourself too? ❤
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1 Reaction@hello1234, I've read posts regarding Sirolimus on this forum as well as facebook but have never come across one where the switch to it was due to recurrence CMV infections. I have googled to see that there have been medical publications about it though. Most people get over CMV the first/second time, and they don't get CMV infections almost as soon as they get off Valcyte! I consider hubby to be in a very peculiar situation and proceeding with caution. You can tell I sound very uncertain about the new path the doctor wants to explore. He is the professional so we of course will follow his advice but we, especially myself, are cautiously optimistic.
As with any new drug one must be careful of side effects because they are individualized. People are effected differently because each individual has different needs. The harmful side effects of Sirolimus mentioned by the doctor(mouth sore, high cholesterol, proteinura, lung damage, etc) don't paint a pretty picture and we are hoping for the best. Won't know if there are any major side effects until hubby tries the new medicine "cocktail" as you put it. So indeed I'm very worried. Not sure if you saw the timestamp of my previous response to you but it was done at about 2 or 3 am PST!!
Do you think it's unusual to have to have meet with transplant doctor again after 8 month checkup? Since hubby is doing week labs and in touch with Mayo regarding labs, I'm wondering why we have to meet with him again. I reached out to the nurse for clarifications. Hope to hear from her soon! At this time, no one from Mayo scheduling has called about the next appointment.
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2 Reactions@hello1234, how are you doing with battling BK? How long have you been on low dose Cellcept? Do you anticipate on returning to your normal dose once BK is gone? I'd be happy if hubby stays on some Myfortic but he is completely off of it! And the doctor does NOT want to even put him on lower dosage!
In a previous post, you said it took you months to get over CMV? At that time did they also cut down on your meds?
This is not what I/we had expected with respect to CMV. Was told that CMV and BK are both treatable but didn't expect persistent CMV!!
I hope you're improving on your BK labs and are doing well.
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1 ReactionHi @caretakermom 😊
I totally understand your concerns and worry! I feel the exact same way as you do. Anytime a new virus is diagnosed or a new symptom shows up or there is a medication change....I worry, just like you. The only thing that calms down is reminding myself that the transplant team has seen all of these situations a million times. Also, the adverse reactions of the meds include every possibility. But the probability of many of these adverse reactions can be very low and it still needs to be listed on the drug literature as a possibility.
I don't know if my meds will be returned to the higher dose once the BK virus is gone. Right now, I am looking forward to seeing a negative test. I tested positive in August and I am still positive for BK. It's a concern, but I try not to focus on it until I have my blood test results every two weeks.
With a transplant, it seems there is always something going on. But the great news is that it's not dialysis three times a week! My mother is on dialysis and it's not an easy journey. My transplant, with all of its challenges is definitely superior! ❤
Regarding your next follow up appointment, I think once there is a medication change or recurrent infection, they like to have a follow up appointment. How many weeks or months did the doc suggest until your next follow up appointment? At the one year anniversary or sooner?
@hello1234, Dr. Mour says he would like to see hubby in 2 weeks. Thus far, no one from Mayo scheduling has reached out so I don't know if we need to be pro active and call them? Not sure because Mayo is still reviewing the weekly labs and they call whenever meds adjustments are needed. Would like to get the new meds under way ASAP because the doctor discussed rejection due to lower immuno suppressant meds. Rejection is the dreaded word in transplant!
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2 Reactions@hello1234, I agree that transplant is a more superior option to dialysis. Even with all the challenges that transplant presents, we still prefer it over dialysis. Hubby was on dialysis for a little over 3 years pre transplant, did home dialysis PD and home hemo with me being his care partner. It was a full-time job giving him treatment and having to deal with other things like doctor appointments, product delivery, machines malfunctions, machine maintenance, other household issues, your own needs, etc. ! PD was done every day while home hemo was 5 days a week and I usually ran a 4:30 - 5 hour session. All in all, home dialysis was much better for my hubby than in-center but transplant trumps any type of dialysis, IMHO.
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