Transplant: BK Virus

hello1234, I was on a Tacrolimus target range 6-8 like you. It was never changed and it’s still the same. I haven’t had a biopsy since the BK and haven’t shown any signs of damage, thankfully.

@cmael 😊
That is awesome news to hear! You are definitely calming me down with your positive news. Was your urine BK viral load a crazy high number like mine...100 million?? (I didn't like seeing that number on my labs on Friday).
Thank you again for being so supportive through my BK issue. It's incredibly kind of you to help me with all my questions.... Thank you, Thank you! ❤

I didn’t have any urine tests for BK. I only had it tested through a blood draw at my local medical center along with my other labs. The highest I remember is between 3000 and 4000. Actually, the local labs way of testing was done differently than Mayo, according to my transplant nurse. They made adjustments for that.

@cmael
Thanks for the "heads up" about the possible difference in calibration between Mayo and your local lab tests. That's excellent information. (I wish I had never seen the urine 100 million since the blood is in the hundreds, not scary millions).
Just one more question ... Did your Tacronlimis become elevated due to the infection or because of the lower Cellcept. I remember during my CMV virus, my Tacronlimis became elevated and needed to be adjusted several times. Did that happen to you at anytime with BK?

hello1234. Other than the initial adjustments post transplant, my tacrolimus trough levels have stayed between 6-8, so no need for any changes.

@cmael
Thank you a million times over. I can't express in words how helpful you have been to me. When I "googled" the BK virus, I became very frightened. Speaking with you and finding out the details of your BK virus experience has been invaluable to me. I feel much better.
When I am hiking, there is no replacement for someone who has actually walked the same path you are about to walk. I feel the same way about this situation. You are my experienced "guide" for the BK trail.... Thank you ❤

You are very welcome! I know that when I asked if anyone had info about BK when I got it, there really wasn’t any replies. I’m glad I could help.

Is any one getting Belatacept infusions as part of immunosuppressant regiment? If so how is it working out? I have been on it for 7 yrs once monthly with 250 mg cellcept daily, my donor kidney is 19 yrs old, and was put on this after a mild rejection episode.All is well now?
Thank you

Hi @peggykatz 😊
Nice to meet you! I definitely remember a few people mentioning they were on Betacept infusions in different discussions. I think they were pretty satisfied with it if I remember correctly. (I am going to look through to see if I can identify the people for you). You may want to start a new discussion entitled Betacept infusions within the Transplant group. Because this is a discussion entitled BK virus, there may be Betacept folks that are not viewing these discussion. You will get a better response that way....with everyone's reason for going on Betacept and their experience with it.
It's very easy. Just click on start new discussion and title it Betacept infusions. I am on Cellcept and Tacronlimis so I have no experience with Betacept to share at this time, but you will definitely hear from others!

Hi @cmael
I just checked my portal and my new BK virus quant number doubled after a week of reduced Cellcept at 250mg bid with my Tacronlimis.
In the beginning, when you reduced your Cellcept, did you see your number go down pretty quickly or how long did it take to see a reduction in BK virus? My numbers are definitely going the wrong way (double) after one week of reduced Cellcept. I am definitely concerned and sad.
Thank you for being there!