BK virus

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BK virus

Postby olive » Thu May 19, 2016 5:39 pm

Hi everyone, im new to this group can anyone tell me about the bk virus as ive just been told its scarred my transplant. This is my third kidney and ive had it 18months now is there anything that can be done. Thank you to anyone who can help me on this. Feeling :( lost
olive
 
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Re: BK virus

Postby MandyA » Thu May 19, 2016 9:27 pm

I had BKV virus for about six months last year.

It's apparently very common, but causes no symptoms in "normal" people.

I had to stop taking MMF while I had the virus, to allow my body to fight it off.

Obviously, this does increase the chance of rejection during that time.

However, my level of BKV virus gradually reduced without any other intervention, and I'm now back on my previous dose of MMF.

I think that there are other members of the forum who have had BKV virus for longer.

Mandy
MandyA
 
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Re: BK virus

Postby Postachite » Tue May 24, 2016 7:09 am

olive wrote:Hi everyone, im new to this group can anyone tell me about the bk virus as ive just been told its scarred my transplant. This is my third kidney and ive had it 18months now is there anything that can be done. Thank you to anyone who can help me on this. Feeling :( lost



I agree, I know a few people having this but not much knowledge about this myself. Will try and get more info about it myself but I think other members here should be able to give you more than enough. Anybody else have something to share?
Postachite
 
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Re: BK virus

Postby Emgee » Mon Aug 22, 2016 10:02 am

Hello All

I am new to this site. I had a kidney transplant about 4 years ago. Creatinine started to go up gradually since 2014, however it was only diagnosed in March this year. As part of the treatment, Cellcept has been stopped and Tacrolimus has been reduced. I have also been given Cidofovir and Leflunomide.
The number of copies of BK has now reduced. I wonder how long it will take for it to go to zero and will creatinine level come down.

Thank you for your response

Cheers
Emgee
 
Posts: 1
Joined: Mon Aug 22, 2016 9:53 am

Re: BK virus

Postby Grey » Wed Sep 14, 2016 1:24 pm

BKV After Transplant.

So there you are, so excited about your new kidney, (in my case 5 months after transplant) the thought of no dialysis and hoping to get a semblance of normal life back when BANG, your bloods start going haywire. Creatine starts rising, white blood cells start dropping and it is clear something is wrong.
In my case by chance a registrar (junior Doctor) noticed that my white blood cell count was very low and as a precaution asked for a series of different blood results. At the same time, although typically the Creatine level worsens gradually, mine jumped from 140/150 to 250 between two 3 week tests.
That was just 10 days ago and I remember sitting there opposite the kidney specialist while he picked up the phone to call the specialist transplant ward upstairs to see if there was a spare bed to admit me. Man my life fell apart in those few seconds.

Over and above that I had become a bit lax on the water front, only drinking about 2 L a day. Big shock and wake up call.
Anyway a bit on the epidemiology of the virus. Humans are the natural host for BKV, JVC and SV40 and it is thought up to 80% of the population carry it in it’s dormant state. The way we get it is varied and may be faecal-oral, food prepared by someone who has not washed their hands for example, respiratory, transplacental, or from donor tissue.

BK virus infection is considered to be contagious between people. Generally the infectious agent may be transmitted by saliva, air, cough, faecal-oral route, surfaces, blood, needles, blood transfusions, sexual contact, mother to fetus, etc.

Begs the question which I will ask at my next clinic visit, why is more separation not given for patients visiting the clinic with this virus? It just so happens that a lady I know who has also just had the virus, sits next to me and chats every time we go to clinic, did catch it from her?

Answer was, they feel the risk of infection is very small and not worth worrying about.

BKV is the consequence of modern potent immunosuppression aimed at reducing acute rejection and improving allograft survival which suppresses the immune system so well that dormant and or caught viruses can take hold. BKV infections lead to kidney allograft dysfunction or loss.

Decreased immunosuppression is the principle treatment but predisposes to acute and chronic rejection. The only way to treat BKV is to reduce the immunosuppression allowing the immune system to fight the virus but as we are aware this also predisposes a transplant patient to rejection. It becomes a tightrope situation, too little suppression = rejection, too much = BKV killing your kidney.

There are no antiviral drugs that can help.

Just by way of incidence, the emergence of polyomavirus nephropathy (BKV) has coincided with the use of new potent immunosuppressive medications. It is usually associated with BKV, affects up to 8% of recipients, and frequently results in allograft loss or permanent dysfunction. However as already mentioned dormant BKV in one study was found in 80-88% of pre-transplant patients.

A bit about the treatment of BKV virus.

The principal treatment for BKV nephropathy is reduction in immunosuppression.
Various strategies include reduction or discontinuation of any calcineurin inhibitor and/or adjuvant agent, changing from MMF to steroids and in really bad cases from tacrolimus (Prograf) to cyclosporine or commonly known as Gengraf or Sandimmune or Neoral.

The net result of this should be an improvement in your creatine levels, then stabilisation and an increase in your white blood cell count.
When BKV nephropathy (worsening performance of kidney measured by creatine level) is diagnosed early within the first 6 mo after transplantation and the creatinine is stable, survival is improved compared with when the diagnosis is made later and the creatinine is elevated.

In my case they noticed my white blood cell count was very low, after investigation realised my creatine had worsened badly, did more tests and found the BKV traces. Immediately stopped the MMF (cellcept) and started me on a steroid, which by the way is also a form of immune suppression but less aggressive with a side effect of encouraging white blood cell growth necessary to fight the virus.

The long and the short of it is all they can do is reduce immunosuppression which allows your own white blood cells to increase and fight the virus. It is a balancing act because reducing immunosuppression too much can lead to rejection, but rest assured, they do this all the time and have a good feel for the procedure so you are in good hands. I was and lived to survive not just BKV but a separate CMV infection and my kidney transplanted kidney is doing just fine.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: BK virus

Postby j0hnr » Mon Oct 31, 2016 9:04 pm

olive wrote:Hi everyone, im new to this group can anyone tell me about the bk virus as ive just been told its scarred my transplant. This is my third kidney and ive had it 18months now is there anything that can be done. Thank you to anyone who can help me on this. Feeling :( lost

Hi Olive
I have 3 different viruses post transplant - BK virus, EB virus and CM virus and they knew I had at least one of these at low (dormant) levels before I went for the transplant (they had also tested the donor/organ CM virus status - negative). I understand that I will likely always have these viruses as even the unsuppressed immune system prior to transplant wouldn't fully eliminate them (the BK virus can exist in the bladder for example where it is more difficult for the immune system to attack it)

In the early stages (around May 2014 I think) my BK virus IV copy count went quite high (from memory I think they were talking 10-to-the-8th-power copies) and they would be happy to treat as negative once down to less than 200 copies (ie NOT zero! - please note, Emgee). My body achieved this sometime last year.

For me, these viral counts are measured in my blood before every visit to the clinic (3 monthly now) for them to keep track of. In the very early stages back in 2014 they used to measure for the BK virus in my urine too.
Type 1 diabetes: c.1974
Stage 5 CKD: Dec2012 (creatinine 395 eGFR<15)
Dialysis (CAPD): Oct2013 (creatinine 609 eGFR<10)
SPK transplant: 18Feb14 (both still going well)
j0hnr
 
Posts: 11
Joined: Mon Jun 03, 2013 3:39 pm

Re: BK virus

Postby Laurafarano » Sat Jun 10, 2017 11:35 pm

Hi my name is Laura and my dad received a transplant 3 months ago...he has the BK virus and is sooo worried and now I am worried. The doctors here in Australia have lowered his tacrolimus but his kidney is starting to reject. Can the transplant still work normally with the BK virus? We are worried it will keep rejecting. He has now been given steriods to build his immune system up. How are you all going witb the bk virus? He has me to ask you all....when he was first told he had BK he had a sore throat and still does...is there any correlation? I keep aaying I haven't read anything that shows this. Any help would be greatly appreciated. Thanks Laura :)
Laurafarano
 
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Joined: Sat Jun 10, 2017 11:24 pm

Re: BK virus

Postby Grey » Mon Aug 28, 2017 10:23 am

After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: BK virus

Postby Grey » Mon Aug 28, 2017 10:29 am

BKV After Transplant. My own experience 1 1/2 years ago.

So there you are, so excited about your new kidney, (in my case 5 months after transplant) the thought of no dialysis and hoping to get a semblance of normal life back when BANG, your bloods start going haywire. Creatine starts rising, white blood cells start dropping and it is clear something is wrong.
In my case by chance a registrar (junior Doctor) noticed that my white blood cell count was very low and as a precaution asked for a series of different blood results. At the same time, although typically the Creatine level worsens gradually, mine jumped from 140/150 to 250 between two 3 week tests.
That was just 10 days ago and I remember sitting there opposite the kidney specialist while he picked up the phone to call the specialist transplant ward upstairs to see if there was a spare bed to admit me. Man my life fell apart in those few seconds.
Over and above that I had become a bit lax on the water front, only drinking about 2 L a day. Big shock and wake up call.
Anyway a bit on the epidemiology of the virus. Humans are the natural host for BKV, JVC and SV40 and it is thought up to 80% of the population carry it in it’s dormant state. The way we get it is varied and may be faecal-oral, food prepared by someone who has not washed their hands for example, respiratory, transplacental, or from donor tissue.
BK virus infection is considered to be contagious between people. Generally the infectious agent may be transmitted by saliva, air, cough, faecal-oral route, surfaces, blood, needles, blood transfusions, sexual contact, mother to fetus, etc.
Begs the question which I will ask at my next clinic visit, why is more separation not given for patients visiting the clinic with this virus? It just so happens that a lady I know who has also just had the virus, sits next to me and chats every time we go to clinic, did catch it from her?
BKV is the consequence of modern potent immunosuppression aimed at reducing acute rejection and improving allograft survival which suppresses the immune system so well that dormant and or caught viruses can take hold.
BKV infections lead to kidney allograft dysfunction or loss.
Decreased immunosuppression is the principle treatment but predisposes to acute and chronic rejection. The only way to treat BKV is to reduce the immunosuppression allowing the immune system to fight the virus but as we are aware this also predisposes a transplant patient to rejection. It becomes a tightrope situation, too little suppression = rejection, too much = BKV killing your kidney.
There are no antiviral drugs that can help.
Just by way of incidence, the emergence of polyomavirus nephropathy (BKV) has coincided with the use of new potent immunosuppressive medications. It is usually associated with BKV, affects up to 8% of recipients, and frequently results in allograft loss or permanent dysfunction. However as already mentioned dormant BKV in one study was found in 80-88% of pre-transplant patients.
A bit about the treatment of BKV virus.
The principal treatment for BKV nephropathy is reduction in immunosuppression.
Various strategies include reduction or discontinuation of any calcineurin inhibitor and/or adjuvant agent, changing from MMF to steroids and in really bad cases from tacrolimus (Prograf) to cyclosporine or commonly known as Gengraf or Sandimmune or Neoral.
The net result of this should be an improvement in your creatine levels, then stabilisation and an increase in your white blood cell count.
When BKV nephropathy (worsening performance of kidney measured by creatine level) is diagnosed early within the first 6 mo after transplantation and the creatinine is stable, survival is improved compared with when the diagnosis is made later and the creatinine is elevated.
In my case they noticed my white blood cell count was very low, after investigation realised my creatine had worsened badly, did more tests and found the BKV traces. Immediately stopped the MMF (cellcept) and started me on a steroid, which by the way is also a form of immune suppression but less aggressive with a side effect of encouraging white blood cell growth necessary to fight the virus.
The long and the short of it is all they can do is reduce immunosuppression which allows your own white blood cells to increase and fight the virus. It is a balancing act because reducing immunosuppression too much can lead to rejection, but rest assured, they do this all the time and have a good feel for the procedure so you are in good hands. I was and lived to survive not just BKV but a separate CMV infection and my kidney transplanted kidney is doing just fine.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester


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