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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 😊 It is great to hear from you!
The blood test I received was called Cytomegalovirus Ab, Igm, S and it came back as "Positive". The Standard Range is listed as "Negative". So this blood test returns as either Positive or Negative with no numerical values. Please keep me posted after you speak with Mayo about the test you received!
Also, @caretakermom
How did things work out with the low WBC, new Valcyte replacement drug, etc? I assume the CMV viral load is <200 now?
The lab result came back with 1.6 and according to google, anything > 1.1 is considered positive CMV antibodies. Lab result does not say positive/negative and neither does it have a standard reference range, so I was curious to know what your result specify. We will probably hear from nurse tomorrow when rest of labs are available. Important to know if positive igG CMV because my hubby has cavities(delayed dental visit because of CMV was supposed to go in early August) that needs to be fixed, before they become a serious problem. Nurse says left cavities left untreated the dental infection can potentially migrate to other parts of body such as heart which may then cause serious issues. So they're trying to get him off Valcyte as soon as possible. If this week lab shows neg CMV(must be 3x in a row total, the previous 2 labs show undetected/<200 ) then the plan is to take him off Valcyte so his WBC can come back up. Then when WBC gets to be at least a 3 he can see dentist to fix cavities!!! WBC from previous lab is still very low so am hoping that once he is off Valcyte WBC will increase!
Hopefully this will happen soon...
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1 ReactionThey did not replace Valcyte because when they increase the dosage from 450mg daily to 900mg 2X/day, the CMV load went down and WBC was still above 1. So my hubby was stuck with Valcyte and now his WBC has depleted to 1.8, which is too low, not safe to go to dental appointment. Mayo is aware of dental issue and will let us know when it's Ok to make dental visit, hopefully before too late to save teeth!
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2 ReactionsHi @caretakermom 😊
What are your hubby's current meds now that the CMV is resolved at <200? Also, will he take 2,000mg of amoxicillin one hour before his dental work when it's scheduled?
Hi @hello1235, his CMV is resolving but not completely off Valcyte yet. Will know for sure by tmrw or Friday whether he can get off Valcyte completely. I expect the provider to reinstate his immunosuppressant dose for both Tacrolymis and Myfortic. He is NOT taking prednisone. For the dental appointment, he will take 2000mg Cephalexin 30 mins - 1hr before procedure.
Please keep us posted after the doc visit @caretakermom I am hopeful that your hubby will be approved for his dental work very soon. Is the WBC that they are requiring 2.0 to begin the work?
They want his WBC to be 3.0 or higher before he visits dentist.
@caretakermom
Hopefully, this week will be the third lab with <200 so hubby can stop the Valcyte and the WBC can recover quickly to the 3.0. I have good feelings that within a couple of weeks, he can have the dental work completed and all of this stress an be behind you both... I think you are on the "two yard line"!! 😊 Please keep us updated.
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2 ReactionsHi @hello1234, this week's lab shows CMV is undetectable which will be 3x in a row. Provider says he can discontinue with Valcyte but continue to do weekly labs. They will increase Myfortic when CMV continues to be undetected. Unfortunately his WBC continues to deplete, latest lab shows 1.4, down from 1.8 so I'm not sure when he can visit dentist for dental work.
Worried because I don't want him to end up with mouth infection!!
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