Transplant: BK Virus

Hi @cmael and @leahdrose 😊
My BK urine test is still coming back as greater than 100 million. My BK blood test just came back as 37. So my urine is considered HIGH and my blood BK is classified as LOW.
Did your urine BK go that high? How long did it take you to see "Negative" after you had a BK blood level like 37?
Thank you both and let me know how you are doing too! 😊

hello1234. I did not have regular urine tests for BK. I only had blood draws. I’m sorry that I don’t remember specifically how long it took to get to zero from 37. I only know that it took several months, but less than a year for it to go to zero. I’m doing well. I hope that you are too, other than the BK.

Hi @cmael 😊
Thanks so much for responding so quickly!
Maybe the BK urine test is not considered as important (which would be good news for me!). Do you think it's okay to get my Evusheld and flu shot while I have BK or do you think it doesn't matter? I was thinking with reduced immune suppression maybe I would get some antibodies from the flu shot this year.

Hi @cmael and @leahd 😊
Good morning, it's me! When you were fighting BK virus, did your creatinine blood level ever go up?

Hi hello1234, I don’t remember my creatinine going up when I had BK.

Thank you @cmael 😊 My creatinine went up so we are now retesting tomorrow. The concern is my immune suppression meds are down to 250mg bid Mycophenolate and 6mg Envarsus XR. Hopefully this is not a new sign of rejection or related to BK nephropathy.

Good to see a group on BK! Its quite the battle. It showed up in my blood 3m post transplant. Ive been fighting 3yrs 2m. Off tac/cell after trial of decreasing & now on steroid & Cyclosporine(causes hair growth, hasn't been a bad thg tho). So happy to read ppl have cleared it.

Hi @somedaydialysisfree 😊
It's so nice to meet you and Congratulations on your kidney transplant!
I totally agree with you. It seems like forever to clear BK virus.
I was diagnosed with active CMV at 8 months post transplant. With reduced immune suppression and Valcyte, CMV cleared in 6 weeks.
I think because there is no effective anti-viral med for BK, the solution is to reduce the immune suppression. When reduction doesn't work, then a change of medication. From my reading, the Tacronlimis and Mycophenolate combination is the most prone to BK activation. I was diagnosed back in August and it's still high in my urine 6 months later. I am taking 250mg bid Mycophenolate and 6mg Envarsus XR (Tac).
What dosages of Prednisone and Cyclosporine are you currently taking? Is the hair growth from the Cyclosporine minor facial hair?
With my significant hair loss from Tacronlimis, I have been weighing the pros and cons of switching to Cyclosporine so I would love to hear your experience.
What is your current BK blood viral level? Is everything else going well for you?
Thanks so much for joining in on the conversation!

Im on 5mg steroid & 50mg am & pm Cyclo. It has been minimal facial & my head of hair is thicker, had lost alot prior frm tac. I did try infusions of cidofovir but that didn't work either. BK inflamed/damaged my kidney, creatnine started going up at 8m & at 1yr 5m I went back on dialysis. Will be on dialysis 2yr in April

My BK level is lowest it has ever been at 220, highest was 600,000's in blood. Im back on the list inactive until it clears for 3m, then I can go active on transplant list. I originally failed due to pkd. My advice to you is do what you enjoy to clear your mind, so you can have peace during this battle because it can take over. That is really important. I was able to reach my peace with meditation & excercise/stretching. Praying for you!