BK virus

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anightingale
Posts: 2
Joined: Sun Oct 06, 2013 12:34 pm

BK virus

Post by anightingale »

I have just passed the second anniversary of my transplant and thought everything was going swimmingly well. I have just been informed that my bloods and urine show I have bk virus. I have been told that I will need to have a biopsy. Has anyone had any experience with this virus? Can things work out well or is this the end of my transplant? Sorry to sound so defeated, but it's all a bit of a shock.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: BK virus

Post by jbell »

I am very sorry to hear you news and no wonder you feel shocked at the moment. I cannot help with the bk virus but I am sure someone on here will be able to advise you. I just wanted to say I am thinking of you and really hope this is not as bad as you think it may be. jbell
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: BK virus

Post by AmandaClare »

I know nothing about bk virus. However Dirverd posted a while back to say that he'd finally got rid of the virus after a year.

http://kidneypatientguide.org.uk/forum/ ... rus#p63521

Best of luck
Amanda
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: BK virus

Post by SKM23435 »

Sorry to be a bit slow - but what is BK virus?
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: BK virus

Post by jbell »

You are not slow I was wondering what BK virus is as well !
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
dirverd
Posts: 212
Joined: Tue Aug 02, 2011 3:42 pm

Re: BK virus

Post by dirverd »

Yes, I've had it for about a year.

It a disease that most people have but it only becomes active when the patient takes immuno drugs. It can cause creatinine to rise. What used to happen was the Drs would take this as a rejection episode. And up the immunos, making it worse.

However, nowadays they test for it and can lower the drugs to give the body's immune system enough power to fight it. then as a general rule it goes away. But they have to be careful the don't lower it so much you have so rejection episode.

When it first appeared on my blood test after a year, it showed I had 270,000 copies. ( the Drs said they seen it up in the millions and they've managed to get rid of it)

To get rid of my BK they lowered my MMF, then stopped it.

Then they lowered my Tac.

The last but one blood test but showed it had gone, then last week it had come back slightly at just 900. But the Drs are sure it will go. And throughout the whole time my creatinine has been rock steady.

It's not a great thing to have because as I'm sure you are, it causes worry. But nowadays in most cases once they've found it they can get rid of it.

Good luck.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: BK virus

Post by SKM23435 »

You still haven't told me what BK is? What does BK stand for?
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
Thumps
Posts: 1306
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: BK virus

Post by Thumps »

A very long biological name, I imagine. Even Wiki refers to it as just BK, and indicates a lot of people have it but are asymptomatic. Bit like CMV, I'm guessing?
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
dirverd
Posts: 212
Joined: Tue Aug 02, 2011 3:42 pm

Re: BK virus

Post by dirverd »

This what the National Kidney Federation says about the BK Virus. There's not much info anywhere about it. Even the Drs don't really know much about it.

I got my results back and it's negative again. Looks like it's finally gone! Woo hoo!

"BK is a virus that causes a minor illness in healthy people, and indeed it is very common in the general population and causes little or no harm. After kidney transplantation, though, it can cause infection in the kidney. This does not usually make the person feel ill at all, but can cause deterioration in transplant function and a rise in the blood creatinine level. BK virus is most often seen 3-12 months after transplantation in people who had high levels of anti-rejection treatment in the first few weeks after the transplant. It is diagnosed by appearances on a biopsy of the kidney, and on blood and urine tests for the virus. Treatment initially consists of reducing anti-rejection therapy, and the body’s natural defences may then get rid of the virus. In more severe cases, treatment with anti-viral drugs may be needed, for example an injection once a month of a drug called ciofovir.

In extreme cases BK virus can cause failure of a transplant, but more often reduction in anti-rejection drugs and anti-viral therapy will get it under control."
anightingale
Posts: 2
Joined: Sun Oct 06, 2013 12:34 pm

Re: BK virus

Post by anightingale »

Thanks to everyone who has posted a response. It was the first time I had ever posted anything and it really did raise my spirits.

I went to the renal unit and was told not to panic. The BK virus count is only showing in the 100s in my blood so the Dr is pleased it has been caught early. Like the other posters have said the Drs have stopped the Myfortic (MMF) and have raised my steriods. I still have to have a biopsy, but this has been postponed because my blood pressure was sky high. (Not helped by the worry and I am off work with stress - I'm a teacher- say no more)

Many thanks again.
Thumps
Posts: 1306
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: BK virus

Post by Thumps »

Glad you felt able to post and that you got a good response :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Christian2170
Posts: 1
Joined: Thu Jul 17, 2014 7:50 pm

Re: BK virus

Post by Christian2170 »

I got it about a year or so ago. I've had my transplant about 8.5 years. They found it after my creatinine started to go up. I had all the classic symptoms. High blood pressure being the main culprit. They treated me by reducing the Prograf dose but it didn't seem to work. Finally after pleading with the doctor they removed Cellcept and gave me Leflunomide. It seems to be working. My creatinine was at 3 but it now dropped to 2.8 and my blood pressure has normalized. The thing that kills me is they could have tried this a year ago and didn't. :evil:
Elfadan
Posts: 6
Joined: Tue Jan 13, 2015 4:37 am

Re: BK virus

Post by Elfadan »

Hi everybody, I am a kidney transplant nephrologist who has special interest in the BK virus. I have noticed that some of you have some questions about the BK virus. Since my group and I have published many articles about the BK virus after kidney transplant, it would be my pleasure to help a little bit to give you some information about the BK virus and answer some of the questions posted above.
Some of you guys asked about the origins of the name. The B K are the initials of the first patient who was diagnosed with BK after kidney transplant back in the 1970s.
Now what is the BK virus? it is a dormant virus that most of us had already caught during early childhood. The virus stays in our body in a sleeping mode because our immune system is strong enough to suppress the activity of the virus.
Why the virus gets activated after kidney transplant? this is secondary to the effect of the immunosuppression drugs. These amazing drugs help to suppress the immune system so your immune system will not be able to recognize the new foreign kidney as a foreign body and prevent the body from attacking the kidney to get rid of it - without the immunosuppression drugs the body will recognize that the new kidney does not belong to the patient's body. When the immune system gets suppressed, the virus starts to flare and wakes up.
What is the incidence of BK re-activation after kidney transplantation? about 2-3 patients out of every 10 patients might reactivate the virus during the first year after transplant, mostly in the first 6 months after transplant.
How to diagnose BK reactivation after kidney transplant? most centers nowadays preform screening tests to check the presence of the BK virus in the blood even before any rise in kidney function. It is a well known fact now that early detection is the key for cure. Most centers run a surveillance monthly in the first 6 months. Then less frequent ( bimonthly) until 12 months after transplant.
Is any BK reactivation after kidney transplantation harmful? No, if the virus is less that 10, 000 copies usually it clears without negative outcome - and some times it clears spontaneously even without any intervention. If the virus is positive in blood, kidney biopsy might be needed to check if the virus has invaded the kidney or not yet. When the virus invades the kidney, it causes some sort of sever inflammation - known as BK virus associated nephropathy - which presents as rise in serum Creatinine.
What is the treatment of BK virus? currently, there is no approved treatment for BK virus. Since the virus gets reactivated secondary to immunosuppression - or let's say over immunosuppression - then the only effective treatment would be decreasing immunosupression drugs. Usually Cellcept is the first drug to get decreased or stopped, if no response other immunosuppressive drugs might be decreased. This is a very tricky step, as decreasing immunosuppression medications can induce graft rejection. Your nephrologist will be the best person to handle this and restore the balance to avoid rejection yet treat the virus.
I wish this piece of information has added something new to your knowledge about the BK virus. I will be checking this blog frequently to see if any of you guys have questions about the BK virus. I would be happy to help you with that. I wish you all a happy everlasting kidney :-)

Dr Elfadawy, MD
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: BK virus

Post by SKM23435 »

Elfadan,

Thanks for that. Most informative and nicely put.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
wagolynn
Posts: 1367
Joined: Thu May 23, 2013 2:49 pm

Re: BK virus

Post by wagolynn »

Hi Elfadan,
Thank you for taking the time to write your post and in plain English.
I wish more 'professionals' would jump in to keep us all on the straight and narrow.
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