Bk virus and hair loss

[Tula6]

I wrote a post before receiving this email. Hope I get a response.

[KelliC_NKF]

Are you wondering if hair loss is connected to the BK virus? If so, I was not able to find a direct link, but hair loss is a noted side effect of some of the medications taken after receiving a kidney transplant. For more on the BK virus visit: kidney.org/atoz/content/bk-...

[Tula6 in reply to KelliC_NKF]

Thank you KelliC_NFK

I had read the link you sent, and I know some of the immunosuppressive drugs cause hair loss.

My specific questions are;

1. What steps will be taken if BK virus is still present after lowering medication?

2. Do people find that over time hair loss lessons and continues to grow?

Thanks to anyone that might have answers.

Tula6

[marcyc NKF Peer Mentor NKF Ambassador in reply to Tula6]

My husband was positive for BK a couple of times but it went away on its own. The transplant Nephrologist said if levels stayed high they would put him on anti viral meds. I know there are always different regimens with different centers and docs. Do not hesitate to ask questions of your Nephrologist.

[Tula6 in reply to marcyc]

Thank you so much Marcy’s for your response. They’ve taken my meds down quite a bit. I go in for check mid February. Keeping fingers crossed it’s gone. If it is I’m sure they will increase my doses again.

Then praying it doesn’t come back. I want it gone! Have to say with the decrease in meds I’m not so shakey. I’m on Envarsus time release tacrolimus. Crazy expensive!

Thx again

Tula6

[marcyc NKF Peer Mentor NKF Ambassador in reply to Tula6]

I was my husband’s donor and I am a registered nurse. During the early days after his transplant it was very easy to get very anxious over abnormal lab. Trust your transplant team but don’t hesitate to ask questions. Things will level out!

[Tula6 in reply to marcyc]

Thank you for the encouragement!

This isn’t my first rodeo... lol

I have pkd and pld.. had a liver resection about 6 years ago due to enlarged belly.. not being able to eat etc. looked like I was 8 months pregnant. Then recently my kidneys were failing. Had to remove both my football size kidneys... good riddens to this babies!

I’m certain my transplant team are on top of it.

Liver resection at Mayo Clinic - Rochester MN

Kidney transplant at UCSF San Francisco

I’m blessed I so many ways🙏

Best of luck to you and your husband

💙