Transplant: BK Virus

@hello1234, When I tested positive for BK virus, my meds were: Tacrolimus 5 mg a.m. and 4 mg. pm., 5 mg. Prednisone and Myfortic or Mychopenolic 360 mg a.m. and 360 mg. p.m. On 5/27/22, the BK virus result was 2,231 copies. My doctor ordered to completely stop the Myfortic. On 6/13/22 lab result, it was really alarming that the number nearly doubled to 5,200 copies after stopping the med. for two weeks. Thankfully 🙏🏼, the numbers declined in every two weeks of testing. On 8/12/22, it was finally negative, and I was put back on Myfortic for the same dosage. I hope and pray that it doesn’t come back although I know most likely it will. My GFR and creatinine levels were good and normal during these periods when BK virus was present.
I hope it goes well for you. Everyday is a journey, and I always pray that we overcome the challenges we face.

Hi @leahdrose 😊
You have no idea how happy you just made me! When I saw your message come through and read it, I said thank goodness for Leah. ❤
I have been so upset by this BK virus diagnosis and now the "double" viral increase. Your message that you experienced the same double viral increase is unbelievably comforting!
My Cellcept (MMF) was reduced to 250mg, it has not been completely stopped yet.
I assume that will be the next step if the viral load doesn't come down and then they will add 5mg Prednisone to cover the removal of Cellcept in addition to my Tacronlimis. Do you have any issues with Prednisone? (I have no experience with it.)
My local nephrologist was surprised that my Tacronlimis was not reduced. Did your doctor explain why they removed the Myfortic instead of reducing the Tacronlimis? I am curious too how they choose which immune suppression to remove.
I would love a reduction of Tacronlimis. I think it's giving me brain fog in addition to the significant hair loss. Was your blood target range for Tacronlimis held at 6 to 8 during your BK and after?
THANK YOU again Leah for jumping in to help me! It means the world to hear your experience since it's very similar to mine and ultimately worked out to be "negative" with no damage to your GFR.

I have been taking 5 mg. of Prednisone since discharge from the hospital after surgery. It’s not a new med. added to my regime because of BK virus. I’m experiencing hair loss from Tacrolimus so it is also my hope that the dosage be reduced. My Tac. target is 5-7 for months now even during and after BK. There has been no adjustment to Tac. dosage for several months now as the lab results have been within this range. When BK appeared, the only change to my meds. was to temporarily stop Myfortic. Now that BK is gone, Myfortic is back at the same dosage.

@leahdrose 😊
Thank you again for all the scoop. I can't express how much I appreciate you joining in Leah to help me! I am hopeful that now that your BK is negative and in the background, it stays that way. Please keep me posted on your end on how everything is going and I will do the same. You definitely gave me a Labor Day Weekend super gift and calmed my soul. ❤

Hi there hello1234. I am not a kidney transplant patient, but will be listed for a double lung transplant at some point; that is why I am in this group. I looked up the BK virus and read that it is common for it to appear in folks after a kidney transplant. It can be caused by overuse of suppression meds. Sometimes the suppression meds are backed down some to remedy the problem. Please let me me know how you are doing with this. Wishing you you well.

Hi @windwalker 😊
It's so nice to meet you! Yes, I will definitely keep posting on how things are progressing with the resolution of my BK virus.
I can't tell you how thankful I am for my Mayo Connect Transplant family! It is so comforting to have this supportive community to reach out to when challenges occur on our transplant immune suppressed journey. Thank you for researching! ❤

Hello1234, I’m sorry for the late answer. We were at the lake for the long weekend. I’m so glad Leah joined in on the BK discussion. My numbers took awhile to turn around and then very slowly came down. I wouldn’t worry about your numbers yet, although I reacted the same way when my numbers weren’t going down. As far as hair loss, it’s very common after a traumatic heath event. I also found it depressing to be losing hair. Because of this group, I found that Biotin is helpful with hair loss. I contacted my transplant nurse team and it was okayed. The pharmacist recommended 1000 units. It really helped. I don’t take it anymore since my hair is back to normal.

Thank you so much @cmael 😊
I hope you had a wonderful holiday at the lake! It sounds like a beautiful way to spend the long weekend.
I am so thankful for both you and @leahdrose joining in and hand-holding me through this BK virus experience.
It's incredibly nerve-wracking to see the viral numbers going the wrong way. Knowing that you both experienced it, has calmed me tremendously. I hope to report a decline in viral load in the weeks and months to come! ❤

Hello1234, Yes! I am so thankful for the this online support group as well. It has been a real Godsend. I have been a member and Mentor since 2015 or 2014 in another group, 'Mac and bronchiectasis'. I was told in 2013 that I would need a lung transplant by my local dr. He then sent me to Mayo. Mayo has helped me to stall it all for all of these years, but since my disease is a progressive one, it will probably come to be. I have made several close friends through this Connect group. I have met six members in person, and one other that stays in contact via personal phone calls. It is nice to meet you too. Do you want to share your real name or stay with Hello1234?

Hi @windwalker 😊
I am so happy to hear that your local doctor referred you to Mayo back in 2013 which has been slowing your progressive lung disease by many, many years...that is so great to hear! My co-worker just received a double lung transplant at Tampa General and he is beyond thrilled with the results. So, if or when you need a lung transplant, I am sure you will be celebrating the positive results just like he is.
He sent me a photo last week of him and his wife at a fancy waterfront restaurant in Florida celebrating. It was very touching to see their smiling faces and how wonderful they looked enjoying his new lease on life!
I will definitely be updating my BK virus status in the weeks and months to come and staying in touch... (Hopefully posting some declining BK viral numbers!)
Thanks so much for reaching out and making contact....I really appreciate it!