Help! First time with active BK virus...

Have been doing very well with my new kidney since the transplant in September 2020. Recent labs were nearly perfect with the exception of the BK PCR. I have this test done every three weeks, so it's now 6500 cp/ml. It sort of hit me hard, emotionally, this afternoon. Called my transplant nephrologist and he said his plan was to lower my Envarsis (TAC) from 3.75 to 2 mg and have labs done in two weeks. And, his plans down the road — depending on what the virus does — is to adjust my Myfortic somewhat as well and/or do an ultrasound. No plans at the moment to do a biopsy. As I said my numbers are almost baseline perfect. My creatinine fluctuates between 1.11 and 1.22 — it's been as low as 1.02 and as high as 1.35. Currently its 1.22.

Any input from y'all on current or previous experiences with the BK would be greatly appreciated. I've already checked out some of the forum's threads on BK. My dad, who was also a kidney recipient, also had several boughts of BK over the course of his kidney. So, I am aware of the complications and tradeoffs one makes when getting a new kidney. BTW, it received a living donor kidney through a swap with my wife.

In haste,

Christopher

[Charly1429]

Hi Christopher! I’m one year post kidney transplant. I had BK virus a couple of months after the transplant and the My Drs adjusted my meds and put me on leflumonide and within a month it was gone. I didn’t even know I had the BK virus and I had no side effects from it. I wouldn’t get to worried about it. Good Luck!

[Hidden in reply to Charly1429]

Hi charly1429…Thanks so much for sharing your experience. It really does help learning about others transplant — ups and downs. My dad had his transplant 15 years ago. He passed away 9 years this past April. I knew my dad had Bk at the very beginning. Since, it was almost 15 years mom can’t remember what his transplant team did.

Congrats on your new kidney 😊

Kind regards,

Christopher.

[Kidme]

Hi Christopher, I'm over 7 years post transplant. I had the BK virus about 3 months post transplant. They took me off Myfortic and also the Valcyte and Bactrim I'd been on. I went back on the Myfortic after a couple of weeks and improved labs. (Never did go back on the Bactrim and Valcyte.) What stuck with me is that the neph said that it wasn't that long ago and you would lose the new kidney if you got the BK virus but they've learned to back off the anti-rejection meds which seems to allow your body the ability to fight it off without compromising your new kidney. (I'm assuming that it used to be you had to go off all the antirejection meds which is game over) Like Charly said, I didn't even know I had the virus. That first year post transplant is tough. Wishing you continued great labs and feeling well.

[Hidden in reply to Kidme]

Hi kidme…Thanks for the helpful insights. Yes, the decided to reduce my tac from 3.5 to 2 mg to begin. I guess the reduction of myfortic is also possibility. I am no longer on vslcyte and am on Bactriam ds 2x weekly.

I do trust my transplant neph more than any doctor I’ve ever had. He’s an md and a doctor of pharmacy so he really knows his stuff.

Yet, it’s still scary to have Bk active in my body.

Kind regards,

Christopher

[Rmatthew]

Hey ! I’ve had bk virus since February 12th, where I was feeling so awful, after adjusting medications constantly since then it has came down a lot, and I’ve been feeling a lot better from it. My EGFR was at 32% with creatinine as high as 218, after getting the medication right my EGFR is now back up in the 50% range, still in my system so might need get to a biopsy to see if it’s just in my blood and/or kidney, but it’s still coming down every 2 weeks, so fingers crossed I won’t need to.

I’m also almost a year post transplant (8th August)

The docs are good at what they do and I’m sure they’ll get everything sorted for you! Best wishes mate!

[Hidden in reply to Rmatthew]

Hi Rmatthew…Thanks for the info and welcome support. Just wondering, what were your virus levels and after they discovered it did it continue to rise. How did they treat you?

[Rmatthew]

As far as I know, the highest was up at 8.9 is what they told me I had went in the morning time because I couldn’t stop being sick constantly, ended up dehydrated and they done bloods and a few days later it came back I had bk virus, so they took me off mycrophenalte completely, and lowered my tac (advograf) aswell and they’ve been put the tac up and down in small doses and it’s been coming down slowly since feb, now they’re not as worried because I’m feeling alright. Discussing the next step now wether to just keep monitoring it or intervene with some other medication to help get rid of it