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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
What is hubby's new WBC number on this lab? And remind me what your hubby is currently taking (med and dosage) now that he's off Valcyte?
@hello1234, latest lab shows WBC = 1.0. Tac - 2mg, 1mg, myfortic 360mg 2x day, flucanozole 100mg daily. Completely off Valcyte since 10/14/22.
How long did it take your body to restore WBC after discontinuing Valcyte?
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2 ReactionsHi @caretakermom 😊
The reason I asked about all your hubby's current meds, is the Valcyte was not the main culprit of my low WBC during CMV. My Mycophenolate (Cellcept) was the med causing me to run to my local cancer center weekly for Neupogen shots. It wasn't until ID recommended to reduce my Cellcept in half during active CMV, that my neutropenia and leukopenia began to resolve in a couple of weeks. I was happy to hear that your husband's experience with Neupogen shots was more successful than mine. I went for weekly shots (Monday, Tuesday, Wednesday) and it didn't help until Cellcept was reduced. It looks like your hubby is still on reduced Myfortic so that's good news. Did your nurse coordinator get back with you? Are they saying to stay the course and give the WBC a couple more weeks to resolve? Is hubby set up for Neupogen shots this week? I am surprised to hear that his WBC went down after stopping the Valcyte, but it may just take a little more time.
@hello1234, yes our nurse coordinator got back to us this afternoon. The provider recommends that the Myfortic be stopped altogether immediately, and resume 5mg prednisone, until they can find out what his latest lab chemistry is. The most recent lab result was collected from 10/17 and only 2 days prior to discontinuing Valcyte. Early this morning hubby went and got labs done for this week so the nurse is trying to see if Quest will stet the 10/25 CBC lab because it will reflect more accurately what his WBC is. My hubby is not happy about resuming 5mg prednisone daily, this really will cause his blood sugar to fluctuate like crazy. Hubby is T2 diabetic. Nurse did say that when all is resolved he may discontinue prednisone and resume Myfortic.
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2 Reactions@hello1234, were you off Mycophenolate completely during leukopenia? How long did it take before you were put back full dose on Mycophenolate? Did they put you on prednisone when you were off Mycophenolate?
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1 ReactionHi @caretakermom
Yes, I thought targeting the Myfortic might be their next move. My Mycophenolate was reduced in half when I was diagnosed with CMV, and then it was reduced in half again when I was recently diagnosed with BK. I never returned to a full dose. At this point, I am not fully removed from Mycophenolate. I am still on 250mg twice a day along with my Tacronlimis. They did warn me that if it this current reduced dose doesn't resolve the BK, they may remove the Mycophenole completely and add the 5mg Prednisone. So I am aware that it's a future possibility.
I am happy to hear that they are aggressively following up on the latest labs. I feel badly that hubby is going through this latest WBC challenge. I know how upsetting this can be! I just got my lab work back and my WBC is low and out of range. I am wondering if my positive covid infection or the covid monoclonal antibodies infusion may be causing it this time.....It's always something!
Hang in there @caretakermom and please keep me posted. ❤
@hello1234, did the covid monoclonal antibodies work? I hope you're feeling better from covid.
You have a double whammy, covid and BK!! I'm sorry to hear about your WBC out of range. My hubby says he feels tired and I wonder if that has to do with his very low WBC!! Is your BK treatment improving? My friend says that when her BK resolved they did put her back on Mycophenolate full dose. Her WBC did drop during BK but it wasn't dangerously low fortuanately.
I'm not sure how hubby's leukopenia resolves if Myfortic is the culprit, unless they remove Myfortic completely and permanently!! I am hoping the provider gives the OK to order Neupogen shots, wait for WBC to improve then put him back on Myfortic. Will know before end of week.
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2 ReactionsHi @caretakermom 😊
Yes, unfortunately I am currently dealing with a double whammy....covid and BK virus!
I am soooo grateful for the covid monoclonal antibodies infusion. It made a MAJOR difference in 24 hours. I started out very scared that my deep congested cough was going to end up with pneumonia and after the infusion I knew I was going to be okay. It's a miracle drug . If hubby or you ever need it, don't hesitate to ask for it.
Regarding my BK, I will keep you posted on my latest labs when I get them. I am curious to see if covid derailed my BK progress or if I am continuing to decline in BK viral load.
Please keep me posted when you get hubby's WBC work back! Transplant will figure this out...to them it's just another day in the park. To us, it's OMG!!! ❤
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1 ReactionHi @hello1234, the MA was able to pull some of the lab results collected on 10/24 at Quest. WBC shows good improvement, went from 1.0 to 1.8. So the nurse is going to talk to provider to see if they want to change anything re medication. They are now saying hubby can go in for dental work when WBC is between 2 and 3. I'm hoping his WBC will continue to improve in the next week and a half. I've rescheduled his dental appointment to next Friday!
Our nurse told us to write stat on the standing lab order so that labs will be available sooner in the future.
It's good that monoclonal antibodies were available when you had Covid. It's not easy to find them in our area. I hope your BK load continues to improve. Keep me posted and thank you for all your inputs.
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3 Reactions@caretakermom That's wonderful news! I am very happy to hear about the 1.8 WBC. When I was suffering with neutropenia and leukopenia and needed dental work, they were comfortable letting me proceed at 2.0 WBC with my pre-medication of 2,000mg amoxicillin. I am happy to hear that they are now comfortable between the range of 2 to 3 for your hubby! You are almost at the goal line at 1.8. I feel good that the next "stat" labwork will be 2.0. I know how happy you will be to have his dental work completed and in the rearview mirror! Thank you for this wonderful 1.8 news ❤ Please continue to keep me posted and I will update on my BK viral load as soon as I receive it. I am hoping my covid infection did not derail my progress. And so the adventure continues..... 😊