Transplant: BK Virus

Hello all,
I am new to this group. My husband is post kidney/pancreas transplant of 6 years and he showing high BK numbers in his urine. Is the BK treatment the same as treating it in the blood?

Hi Kim,
I had a kidney transplant 3 and 1/2 years ago. My BK Virus numbers went up about a year after transplant. The treatment, for me, was for my doctor to reduce my immunotherapy drugs, and switch some things around. I am not aware of any other treatment. For me, we shortened the amount of time between bloodwork and switched meds around and the numbers came down gradually. I hope this is helpful.

Hi @stephanierp
It is so nice to hear from you! I always enjoy your posts. I am also 3 year post kidney transplant 😊 When I had BK virus, my Cellcept was reduced (TAC maintained at 6 to 8 range) and about 6 months later, my BK viral number in the blood was finally negative, but the urine is still positive.
When you mentioned that some of your meds were switched around. I am curious if you stopped Cellcept completely or if your TAC was changed?
I always like to educate myself about the different immune suppression meds and BK patient experiences. Every once in a while my blood work comes back with a slightly elevated BK blood number so I continue to monitor for it and stay vigilant.

Hi @kim1656 😊
Welcome to our Transplant Support Group! It's very nice to meet you. I had a very high BK urine level (over 100 million) and low BK blood level when my immune suppression was reduced. I think the concern of a very high BK level in the urine, is that eventually you may see it in the blood. How high is your husband's BK level in the urine? Are they reducing his immune suppression now or are they going to continue to monitor for BK levels in the blood and then adjust down?

Hi hello1234,
Nice to hear from you, as well! Please don't be shocked by my ignorance, but I do not recall the specifics. I know over the course of 3 years, I have been removed from Prednisone altogether; my amount of Mycophenolate Acid was reduced to the lowest dose possible, after BK issues; and I was removed from Tac and placed on modified Cyclosporine, after a horrible bout of pancreatitis. I am often slightly below the recommended ranges of imunno level (trough) in my bloodwork, but it is a price I have to pay to keep BK virus at bay. And my creatinine levels are really good, and the new kidney seems really happy anyway:)

Hi @stephanierp 😊
Your journey sounds very similar to mine! I was a 30 day taper of Prednisone and my Mycophenolate was reduced to the lowest dosage because of BK. I am still on TAC.
What were you symptoms of pancreatitis? (I was unaware that pancreatitis is a possible adverse effect from TAC).
My creatinine currently bounces between .9 and 1.1. What is your current range of creatinine and do you find that it bounces around or do you test the same number each time?
Thanks so much for sharing. It's so helpful to discuss all this with someone who understands!

@kim1656, Hi, Kim, and Welcome to Connect. I have not had BK virus show up in my labs however it did read that it could be activated at anytime. Since we, transplant recipients, are taking medications to suppress our immune system, it is especially important to start treatment as soon as it is detected.
I am glad that you have already heard from members, @hello1234 and @stephanierp about their experience and treatment for their BK virus. I hope that by now your husband has been in contact with his doctor and has a treatment plan.
Kim, Have you spoken to the doctor about your question about the treatment in relationship to blood or urine BK numbers? What have the doctors advised regarding his medications? How often will he be tested?

Hello. So far his kidney dr here has ordered more labs to confirm, and she said if it is a positive high number, we will have to go see the team at the Mayo Clinic in AZ. We are about 6 hours away from there. We live in NM. He we are still currently waiting for those results to come in.

@kim1656 Hi, Kim. I am constantly reminded of how lucky we are to have the Mayo Clinic transplant team available when we need it - even at a distance. Miles don't seem matter , do they? I'm 800 mile away, but when I need Mayo Rochester's input, they deliver. Only once have I had to return for an unexpected diagnosis and surgical procedure since my liver and kidney transplant in 2009.
Kim, I hope that your husband's labs show improvement ❤️

Hi, I'm new here but read thru the thread because I've had BK most recently for several months. I'm actually a heart recipient. I guess I like to be special. I'm 11 years out and went into rejection a couple of years ago. They pumped me full of meds at the time and then I've been on (4) anti-rejection meds since then. CellCept, Tacrolimus, Sirolimus and Prednisone. This then caused me to end up with CMV and BK for a year. The CMV went away and the BK #s went down but not away. I wasn't symptomatic so they left it alone. Well now I'm symptomatic again and asked to be tested at my annual in early November (after first being tested for UTI's in June, then going to my local urologist, then finally deciding to wait it out for my annual at Mayo). My urine is at the 100,000,000 amount and my blood reads 123,000. I'm wondering when people mention the blood if it's actually counted differently? Like maybe my 123,000 is only 12.3? These numbering systems can be confusing at times. It just says IU/ml. I have an appt with a urologist locally to then hopefully get another cystocopy so I can get a stain (infectious disease would like this). They've already lowered my CellCept but there is concern about lowering anymore due to risk of rejection. I've been off Tacro in the past due to the neuropathy side effects and ended up in rejection. I also took Zortress instead of CellCept for several years because I have cardiac vasculpathy but they wanted to switch me back. I'd like to know, has anyone had the bladder irrigation? At this point, it sounds so lovely. I know mine is so irritated and raw. I can feel it. I've brought it up before. I know it would be painful but in mind it would be soothing. Probably like the alcohol wipes cleaning your skin when changing the port bandages. Oh, and my kidney function went down due to the meds. My eGFR last fall was 21 but now it's in the mid-30's. Working really hard at no starches, sugars, etc. My docs have told me it's mostly med related though. Their scientific word was "walloped" me with the meds. But i'm still here.