Connect
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Transplants Support Group.
Connect
Today 11/3/2022 my doctor decreased my tacrolimus 0.5 mg to once a day and said my labs to follow my level for it I will not need to have anymore because he is going to be taking me off, I'm concern, I know my level is going to be low, however most of the medications I am on can kill me. He not going to do bone marrow bx. any time soon last bx. did not detect any cancer thank "FATHERGOD". Has anyone stopped immunosuppression medication who had stem cell- transplant how did that work out for you?
-
Like -
Helpful -
Hug
3 ReactionsHi @childoffathergod 😊
I think @loribmt may have some experience with a bone marrow transplant and your stopping immune suppression question above.
-
Like -
Helpful -
Hug
3 ReactionsHi @caretakermom 😊
Just checking....is today the day for hubby's dental appointment? Please post how everything is doing with WBC and if dental work is complete. I am looking forward to an excellent report from you! ❤
Good morning, @childoffathergod and welcome to Mayo Clinic Connect. You’ve come to the right place to get some answers for your questions about your stem cell transplant first hand from people who have walked the walk. Though your transplant team is the go-to source for solid answers, it can really feel encouraging hearing the experiences of people who have been there and can tell you first hand.
There are several members in our forum, along with myself, who have successfully had stem cell transplants and will be more than happy to jump in to help you.
Here is a link to a discussion group with Bone marrow transplant members you might find helpful.
My Bone Marrow Transplant story, will you share yours:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I’m almost 3.5 years post transplant and know how frightening it is to start weaning off the medications after transplant. They were our lifelines for most of our transplant journey. The tacrolimus being the most important as it prevented the rejection of the transplant and also prevented Graft Vs Host disease, which can be a very serious complication.
Briefly, our new cells, which take over our immune system, have a tendency not to like our bodies right after transplant. They’re very aggressive and think of our body, their host, as an invader and try to ‘take us out’. That’s where the tacrolimus comes in to keep the new immune system suppressed so that both the cells and our bodies can get along.
Luckily for us, at some point, the cells begin adapting to our proteins and the two can start living in peace together. You have reached this point where your doctor feels comfortable in tapering again as they’ve seen no evidence of GVHD. I remember being pretty apprehensive when I got to .5mg every other day. Eventually it went down to .5mg every 3rd day. Scary but uneventful, though I did have a hiccup with gvhd and had to stay on tacro a little longer and try again. That’s ok too! We all have our own journeys.
What you will need to do, is let your team know if you notice ANYTHING unusual or new. Skin rash, intestinal issues, joint pain, etc. It can come on gradually so keep track of anything new and if it worsens, let your team know. Sometimes it takes a little more time for the body and immune system to work in harmony.
The plus side, getting off the tacro will allow you to drop several of the other meds. You’ll also be able to have your childhood/adolescent and adult vaccinations. Your new immune system will start to mature and eventually you’ll be off all or most of the meds and feeling pretty liberated.
It’s also ok that’s there’s not another bone marrow biopsy ordered right now. Your new immune system is up and running and should be protecting you. Your last several BXs were clean. Future blood tests will monitor your blood counts and if there is anything unusual it can be dealt with. It’s not to say you won’t every have another BX. But for now your doctor feels comfortable without one.
There is no need to fear this transition but I certainly understand what you’re feeling. I’ve been there! If feels like you’re tiptoeing on thin ice for a while. ☺️
If you don’t mind my asking, what led you to needing a transplant and how long ago was it?
-
Like -
Helpful -
Hug
4 ReactionsI had no symptoms per se, but I did feel more tired than usual looking back. My my ALT and AST were 800/1000!!!! They did a biopsy and then steroid treatment in the hospital. Then another biopsy. They put me on Valcyte and another med (I’d have to look it up) until the levels came down- which was about 2 months. That’s when the CMV hit. It went away for about 3 months and now it’s back. Waiting to hear on the latest bloodwork. They have not changed my Tacro in awhile. I’m taking 1.5 am and pm. My levels are around 6. I think they are keeping it low so my kidneys don’t get worse? I haven’t asked.
-
Like -
Helpful -
Hug
3 ReactionsGood morning @jp1023 😊
It sounds like it was easy for them to know that it was time for a biopsy with ALT and AST numbers like that...sounds a little scary! I am happy to hear that after hospital steroid treatment and a slight med adjustment, your numbers were back in line in 2 months. Of course, handling the rejection aggressively with high dose immune suppression allows an opportunistic infection like CMV to show up. It is definitely a tightrope balancing act!! 😊
Is your immune suppression meds back to your normal levels now that the rejection is handled? If you are achieving a Tac blood level of 6 with such low doses, I am sure they are happy. My Tac blood target range is also 6 to 8 . It takes 6mg of Envarsus XR for me to achieve a blood level of 6. I take my meds with food to buffer my stomach.
Are you taking Myfortic or Mycophenolate at your original dosage (pre-rejection) with your Tac? If CMV returned, did you start Valcyte again?
I am hoping your current CMV viral load is low and easy to stop with a few weeks of Valcyte treatment again. It sounds like you are very close to things resolving. I am looking forward to hearing about your new blood work too.
Hi @hello1234, good and bad news. WBC looking good up during the week of 10/24, WBC=5.2. We got the results on Nov 2 and on Nov 4 he got his dental work done. Fortunately, no major issues resulted from postponing dental work; hubby doesn't need to return till next year for checkup.
Then on Nov 4, the same day of dental appmt, center posted lab results for week of 10/31 showing CMV has returned!!!! So nurse says to go get dental work done, then to restart Valcyte that evening. Now back to treatment dose, 900mg b.i.d!! This will be the 3rd time dealing with CMV and the nurse says it does happen when CMV recur so quickly, but very unusual. I'm getting very discouraged because I had hope the CMV antibodies would help fight the CMV, if it returned. I have pushed for the new drug but the center is hesitant because it's "too new" and "very expensive" . Can only get the drug directly from manufacturer, not available thru 3rd party yet. The next alternative is IV Valgancincloir but they would prescribed only if very symptomatic. My husband has never been sick while being CMV positive(cmv PCR > 200). His symptoms are lethargy and leukopenia. So they are expecting his WBC to eventually tank.
Meantime, nurse says it's OK for him to go in to get his flu shots while his WBC has not tanked yet. Given time on Valcyte though, his WBC will eventually get to very low level and then Neupogen shots would be required to bring up WBC. He has a colonoscopy due in Dec and I was going to schedule it but now with CMV and expecting WBC tanking, I'm going to have to hold it off, or any other medical/dental procedures for that matter. It is so very frustrating and I don't know if he will ever get over CMV. It's persistent and his body is just not able to defeat it. I wonder how common it is for CMV to return multiple times. I wonder if longer time is needed to stay on Valcyte, after getting CMV undetected labs. The center always says after 3x undetected it's OK to get off Valcyte. I'm rambling but hope I'm making sense!
-
Like -
Helpful -
Hug
2 ReactionsHi @caretakermom 😊
I am happy to hear that hubby's dental work was taken care of, but I am sad to hear that the CMV returned again. Is the CMV viral load very slight? Does the test result say >200 or did it show an actual number?
I have learned from my recent covid experience that infection can lower your WBC. So I am starting to wonder if your hubby's low WBC is being caused by the CMV infection itself. Is that possible?
Also, was his Myfortic dosage increased and then he got it again or was he still on the reduced dosage of Myfortic and the CMV reappeared?
-
Like -
Helpful -
Hug
1 ReactionHi @hello1234,
Currently CMV load = 1176, <200 is considered undetected and WBC=5.2. The CMV infection didn't show up until this latest lab, at which point WBC has already recovered. Previously, WBC was low(< 1.0) because both Valcyte and Myfortic were the culprits. WBC recovered after both Valcyte and Myfortic were discontinued.
Myfortic is still on hold, provider wants him to get back on Valcyte and continue with prednisone for now. I don't think they will add back Myfortic at the moment because it causes drop in WBC. I'm not sure if or when my hubby will resolve CMV. It is very persistent and feels like we're just going in circles. The team is expecting his WBC to tank eventually, that is one of the side effects of Valcyte. My hubby is ready to try the new CMV drug but the provider is reluctant to prescribe it. Just very discouraging. We and the team thought he finally defeated the CMV so it was extremely disappointing to see the positive result. The provider/nurse didn't expect a resurgent, esp when he has converted with CMV antibodies!! At this point I don't know what the provider's plan is to defeat this!
-
Like -
Helpful -
Hug
2 ReactionsHi @caretakermom 😊
What do you think of the idea of asking your transplant nurse for a referral so you and your husband can have a video consultation with an Infectious Disease doc regarding these recurring CMV infections and frightening low WBC numbers during CMV treatment?
Or what do you think of the idea of sending a message through the patient portal to your Infectious disease doctor? (Normally if you have met with a Mayo ID doctor in the past, you are able to portal them a detailed message and question).
Have you and your husband had appointments with an Infectious Disease doctor after the transplant?
P.S. Also, I wanted to mention the idea of asking your primary doctor to request a Cologuard at home test. It's not the perfect "gold standard" colonoscopy test, but highly effective at identifying pre-cancer and cancer for patients that are not high risk. The test was developed by a Mayo doctor! It may give you some peace of mind and it's very easy to do at home. Nothing invasive. Is the colonoscopy for hubby just a routine screening or is there an active issue that is a concern?