BK Viral load

[Tankjsl]

A few weeks ago my BK viral load shot up. (I am coming up on 20 months post transplant). Back in the summer it was under 500 and now around 4000. The transplant team reduced my Mycophenolate in half and the results dipped a little and then the next week back up. They warned me it might go higher but didn't give me an indication of how long it will take to get it back down to acceptable levels.

I know that an increased BK viral load can damage the new kidney and hopefully this gets resolved.

Has anyone experienced this? What was done to reduce the effect of this virus.

As always, thanks for your advice. Happy Holidays!

[Winner76]

Hi I had BK virus 3 months after transplant , it was over 59.000 . The stopped the cellcept and I never went back on it . Since then I’ve only been on Tacro and steroid , nearly 5 years later and my levels are zero. Talk to your Doctors again, maybe your levels are not too bad at the moment.

Good luck

[DexterLab]

I got BK 10 months after my transplant. I went off Cellcept and added Prednisone. It took about 6 weeks but the BK went away. Docs put me back on the Cellcept and off the Prednisone. No BK in 5 years since. Good luck.

[HSP1965 in reply to DexterLab]

In 2020 getransplanteerd, kreeg BK virus.Gestopt met cellcept.

Nu 2024 problemen met huid en botten door de prednison.

Ben nu weer aan het opbouwen cellcept zodat ik kan stoppen met de prednison.

Benieuwd hoe dit gaat verlopen!

[BeccaCareGiver]

Fortunately, my wife never got the BK virus so they never had to tweak the mycophenolic. Good luck!

[Tarzan5]

I got BK virus 1 year after transplant. Levels were at 10,000 & above. Was in the hospital for about a week taking infusion to fight it. They had no idea what is was till they got the test back to confirm. They cut the cellcept and the tach down to 1 pill a day. BK virus went down to less then 500. They increased the Tach too 2 pills a day. Been that way for 6 years. Kidney was damaged from the BK virus so am back at a stage 4, but the blood work is all good creatain is staying at 3.0 to 3.1 for the last 5 years. They had to switch the Tach to Sirolimus because of skin cancer.

[Tankjsl in reply to Tarzan5]

What symptoms did you have for the BK virus? My levels are not as high as yours. I’m about 4000. How long did it take for the BK to damage the kidney? They have really backed off of mycophenolate. I was taking 2 360mg pills in the morning and another 2 in the evening. So 720 mg a day. Now I take 180 in the AM and 180 for the evening. Hopefully that takes care of it soon. Thanks for sharing

[Tarzan5 in reply to Tankjsl]

I’m sure that will work for you. My levels were at one time were way up there. I don’t remember exactly. My problem was they weren’t checking for BK virus. So when I got it it was a big surprise to them. I was getting labs every month all was good. Then I got my labs 3 days later and noticed my creatinine was 3.8. So I called them they didn’t even know. So I had to go to the hospital the next day. How long I had it we don’t know. They told me the only way to get rid of the virus was to cut back on the rejection meds.

They told me that BK virus is in most people but it’s dormant till your immunity is compromised.

My labs now are BK negative for the last 5 years.