New information about BK Virus?

[UkrainianTracksuit]

Exception from my hiatus to ask about BK Virus. I searched the site already and read all the posts.

With this post, you can tell BK Virus showed up in my blood work. I knew about this before going in for transplant as a possible cause of rejection and that information was reiterated in the outpatient material. Suffice to say, I've been a crying emotional mess with this news.

The plan right now is to halve my dose of Myfortic (720 mg twice a day down to 360 mg twice a day) and to follow the blood work. Decrease of immunosuppressives seems to be the first and standard course of action. I have no symptoms, feel well and my creatinine is really low. (Good for a healthy person.) Down the road, in a couple months, I am scheduled for a biopsy so I figure that would give a better picture of the BK virus situation.

It seems as though I have the Holy Trinity of rejection now, CMV from donor, EBV and BKV. Been taking Valcyte from the beginning but I know that course ends in a handful of months.

Can anyone offer any more recent insights on BK virus? When it was first noticed in your blood, did the decrease of immune suppressants contain the situation quickly? Were more drugs needed afterwards? Feeling rather shattered right now... it doesn't make sense to worry about the future, but.....

[cassandra]

Hi UT I'm very sorry to read this girl.
I don't have any personal experience or insights to offer, but I found this site quite interesting.


http://transplantfriends.ning.com/forum/topics/possible-holistic-approach-to-fighting-the-bk-virus


I would check with the tx team if the supplements are okay to use, and maybe give it a go?


Good luck my friend,


Love, luck and strength, Cas

[UkrainianTracksuit]

Cas, thanks for that. Those tx patients seemed to have good results with their virus load and blood work. The good thing is that those products are easily attainable and not something too out there. I will ask the tx team/ infectious disease about those supplements as I have to get approval for probiotics at the same time. Trying to include some health foods and "approved" supplements in my diet these days.  Thanks again.

[SooMK]

I had the BK virus in my first few months post transplant. They reduced most of my meds and took me off Myfortic, Valcyte and Bactrim. After a few weeks, I started the Myfortic again at half dose and eventually back to the pre-BK dose. I remember the nephrologist I saw (who was not my regular one) saying that it used to be that if you got the BK virus, you lost the kidney but they had learned how to deal with it. That was pretty much the end of it for me.

[UkrainianTracksuit]

Thanks so much SooMK for the positive reply!

I'm in my first few months as well (in my 2nd) and my tx team said it was fairly common but shows up when someone is "too immune-suppressed." However, my home nephrologist is much more freaked out, so to say. Like I said, they halved my Myfortic as the start of treatment and then I have blood work again soon. From your experience, and I know everyone is different, but your course of action was simply to reduce the drugs and all was well? I am still taking Valcyte, Bactrim and my tacrolimus had to be increased.

But anyway, I am relieved to read your experience. Don't feel as much doom and gloom right now. 

[justagirl2325]

My husband also tested positive for the BK virus after transplant.  His doctors told him not to be concerned they will just monitor it for now.  They also have halfed his myfortic to 360 twice a day from 720.   

He goes back May 14 for a re-evaluation to get relisted for a pancreas transplant so he'll be getting a thorough check up then and if they say anything else about it I will post it.

[UkrainianTracksuit]

Hi justagirl, thanks for the reply and definitely, please, please, please, if your husband's team says anything else, please share.

Your husband's case might be a little closer to mine. I wanted to know how BKV interfered, if at all, with a pancreatic tx. There is little evidence that it does but, I read a scholarly journal from 2012 that noted 50% of KP recipients lost their kidney to BKV. The issue was not the virus itself but rather the fear of losing the pancreas caused a more conservative approach to lowering immunosuppressives. As a result, the less-than-optiminal decrease of medications meant inadequate treatment of BKV.

Perhaps situations have changed since 2012 but it was an upsetting number. Thank you again.

[SooMK]

Right, UT, they took me off Myfortic, Valcyte, Nystatin and Bactrim and reduced my tacrolimus. Two weeks later I started back on half dose of Myfortic (180 mg/2 x day). Two weeks later I was back to 360 mg, twice a day of Myfortic (same as now, 4 years post transplant) and back on Valcyte. I didn't take Bactrim or Nystatin again. The Prograf/Tacrolimus stayed at 2mg/2x a day until a year later when it was reduced to what I take now--1.5mg/2x day. (I keep a medical journal, otherwise I remember nothing). I have tested negative for BK virus so far since then so it seems that docs have learned how to manage it. I hope everything goes smoothly but from what I read, and experienced, challenges in the first year after transplants are the norm as your body heals and the doctors figure out that magic recipe of drugs that keeps your new parts working. It's a tightrope to leave you with the strongest immune system they can without allowing your body to reject your new organs. Good luck to you!

[justagirl2325]

We are back from the transplant appointment.  No one is concerned as he has tested negative for the BK virus three times in a row now.  They only had to reduce the myfortic by 50% to have it clear up.  They never once adjusted his advagraf/prograf for the BK virus.  They only explained once he gets the pancreas transplant his meds will increase for a short period of time and then should be right back to  where he is now.

[cassandra]

Thanx for the update. Sounds very promising


   

[Simon Dog]

CMV from donor, EBV and BKV.

My transplant surgeon (future) told me that being EBV+ actually reduced the risk of getting lymphoma from the immunosuppressants.  He was talking in the context of me already being EBV+, not getting EBV from an organ though.

[UkrainianTracksuit]

Hi Just a Girl, thank you for the update concerning the virus and your husband. Sounds good and best wishes for his pancreas transplant. It makes a major difference in life so all the best to him.

In my case, I've kept testing positive for the virus (at least twice now since initial test) but doctor doesn't want to decrease my immunosuppressives further. It is apparently important to keep taking my anti-virals for the other issues too, so, we shall see. As for the kidney, they are not too concerned because my creatinine ranges from 46 to 57 μmol/L so, working well.

CMV from donor, EBV and BKV.

My transplant surgeon (future) told me that being EBV+ actually reduced the risk of getting lymphoma from the immunosuppressants.  He was talking in the context of me already being EBV+, not getting EBV from an organ though.

Yes, that's what was explained to me as well, however, I went into the surgery being EBV- and got it from my donor. As a result, a lot of managing and lymphoma discussions.