The BK Virus

[Cazzy41]

Hey I’m 9 months in after transplant and on my last bloods they detected that my BK virus load was highly active. Upto now it had been dormant. The thing is just before the results I noticed my right leg has become achy and sore. It also feels weak at times. Now my transplant was on the right side. Could this be linked to the virus I have no idea??? I have started steroids to try fight the virus now but the leg is not improving yet. Any feed back greatly appreciated. I hope everyone had an amazing Christmas and all the best for 2019 xxx

[smashandgrab]

I was also put on steroids when my BK load went up and this did work to bring it back to negligible. This is my 2nd transplant and I was unaware that I had the virus as had not shown up before.

I do not like the steroids as it has made my skin very thin and it tears and bruises easily and I have since being on them ruptured my Achilles' tendon in my right leg but not sure of the reason. What have your doctors said?

[Cazzy41 in reply to smashandgrab]

Thank you for replying. My BK load was also negligible until my blood tests were taken on 30th November. So they have stopped my Cellcept and put me on to 10mg Prednisone every morning. They have told me I need to have bloods done on 4th January then see the consultant on 21st. However they say I will need to stay in the prednisone for at least 5 months. But it’s the pain that I’m getting in my leg that’s causing the most issues. And i was also told I am totally run down because I am constantly getting cold sores, as soon as I clear one I get another one it’s a royal pain in the butt.

[smashandgrab in reply to Cazzy41]

It seems to be the time of year to be run down and a low immune system does not help. I did not have any pain with the BK it just put my creatnine up and was picked up in a blood test and then a kidney biopsy. I am under Hammersmith hospital and I assume different hospitals deal with things differently as I have been on Prednisolone for a year now and not too happy about it 10mgs in the morning together with Adoport.

Are you diabetic as this can cause leg pain? What type of pain is it?

[Cazzy41 in reply to smashandgrab]

Yes I’m type 2 but it’s not a neuropathy type of pain. It’s just like when I had the transplant it goes numb, very achy and then gives on me while I’m walking. I had routine bloods done for a check up and they all came back brilliant as far as I was aware, then about 2 weeks after my appointment I received a phone call from the transplant coordinator telling me that they had received results back from Liverpool ( which is where I had the transplant) and that my virus load was really high. Up to now it was completely dormant. I didn’t even know they had taken blood for that so was a bit taken a back. She told me I had to stop the Cellcept and remain on the Adoport 3.5 and add the prednisone 10mg every morning. But this pain in my leg started roughly about 12 days ago and it’s the weirdest thing I have ever experienced.

[smashandgrab in reply to Cazzy41]

Yes they stopped my Cellcept as well to help get rid of the BK which I had never heard of until they said I had.

Have you hurt your leg, put on weight or walking differently? It is a bit of a conundrum. Have you been on any antibiotics recently as I was told some weaken the tendons?

[Cazzy41 in reply to smashandgrab]

I have lost over a stone in weight. And I do not recall any injury or incident where I may have banged it or knocked it at all. It just starts aching badly then just goes dead as I’m walking which has led to many near misses with falls and such like. I’m 41 and at the moment feel about 80 🤦‍♀️. I’m sure whatever it is will hopefully sort itself out one way or another all I want to do is sleep. I had my transplant in March then things went wrong for a while, so than I moved house and packed up everything to move here and I honestly felt like I haven’t had chance to let the gravity of everything sink in. Being a mum of two lads doesn’t give me much time to sit down and reflect if you know what I mean. 😊

[smashandgrab in reply to Cazzy41]

Indeed I do and agree it was too much too soon and it takes quite a while to get over the operation and the drugs so give yourself a break, if you can, and try and spend some personal time now you have the gift of a new kidney . Things will improve for you in 2019 once all your other stresses slow down but do please keep in touch so I know how you are doing.

[Rusty8 in reply to smashandgrab]

I have the same problem with the steroids l have had hematomas from the use of steroids another two last weeks

I don’t know what to do do you stay on steroids and be in.awful pain or do you try to cut them down I am on 7.5 HELP

[Cazzy41 in reply to Rusty8]

If you cut them down then the virus will end up causing rejection. Talk to your Renal team and ask for honest answers to your questions. I’m on 10mg at the moment and feel like death. I am hurting all over, had none of this until I started the steroids. We do what we are told as apparently the Consultants know best but this is putting me into a type of depression and I really don’t want this on top of everything else. But please talk to your team or your General Practioner and ask for advice. Please keep me posted on what advice you are given. And stay strong you have got this 😉

[Vishkit in reply to smashandgrab]

Hey ...I m three month transplant and just came to know that I m bk virus positive so kinda worried .can u please suggest me something that sud do

[smashandgrab in reply to Vishkit]

They will likely change your immunosuppressant therapy to combat the virus and may change one of them to Prednisolone for a while.. WHat tablets are you on at present and have they said anything at clinc?

[Vishkit in reply to smashandgrab]

Thanks for your revert . currently I m taking 1.5 mg prograf twice a day and they told me to discontinue celcept which I was taking 500mg twice a day and I m taking 10 mg Prednisone from the beginning. however I m very scared as my levels are continuously rising a week back the sr creatinine was reached 2.28 at that time we got no clue for bk and thinking of rejection he has given me 5 doses of solumedrol steroids but surprisingly creat went down to 1.7 but now it's rising again and as per yesterday report it was 1.9 and bk is 57900 . Reduction of med does that help or sud I go for ivig also have u also got ur level increased when u were diagnosed also does creatinine comes down after the virus reduction.....

[smashandgrab in reply to Vishkit]

Hi, yes the BK does come down after the medication is altered but it can take time and to give you an idea my BK was even higher than yours and my creatnine was also high but has now come down. My steroids did bring the virus and the creatnine to come down and they also took me off Cellcept but how long have you been on them? Have they said that UVIG might be better? This does work in helping to stop rejection but maybe someone else on this blog has used that. What advice and info did they give you on UVIG ?

[Vishkit in reply to smashandgrab]

I have been on celcept for three months and for IVIG they told me that it's the only possible treatment that they have in case if it is not controlled. In your case how much time did that take to came down and is it completely gone now or still have in less numbers

[Vishkit in reply to smashandgrab]

Also u said steroids helps to bring it down is that bcoz my transplant doctor seems unaware abt this fact moreover its a first case of bk virus he is dealing with it came out his mouth so I m also planning to take a second openion from another doctor

[smashandgrab in reply to Vishkit]

Get a second opinion fom someone who has deal with this before. As you can see fom other people BK is known in patients after transplant but a large amount of people carry this with no ill affects as they have a strong immune system.

There is information on the NHS website if you google as different methods are used in the US and in the UK.

What hospital are you under? How often are they seeing you and taking blood? Have they done a biopsy?

Keep positive and get this sorted. I will see if I can find anything more for you.

[loopy21]

Hey, I am 11 months post kidney transplant. I have never heard of BK? Is this a transplant issue? My kidney doing fine. Side effects from transplant meds are crazy...

[Cazzy41 in reply to loopy21]

Everyone has the BK virus it lives in the kidney according to my Renal team. However it only becomes a problem after transplant. It can cause rejection and a whole host of problems. Up until now I had never been informed that the virus had even been detected and then on my last blood tests I was given the news that the viral load was high and very much so active. If you have never been told about it surely that’s brilliant news as it’s not an issue. I started Prednisone steroids just over two weeks ago and have to have more bloods taken in the morning. But I think it’s fair to say you have no need to worry sweetheart. I am nearly 10 months post transplant.

[smashandgrab in reply to Cazzy41]

I have never felt so bad and 2 yrs post transplant and now a year on 10mg steroids so my Consultant has told me it cannot be them as I would have had the pain as soon as I started but I agree what else? The bruising and damage to the skin is getting me down as well and I dare not wear shorts and am in trousers all the time as my skin peels back at the slightest knock. Have asked to go down to 7.5 mg but he seems not to want to do that even though I no longer have any sign of BK in my blood.

Feeling a bit sorry for myself today and back to clinic on the 24th to check my heart.

[Cazzy41 in reply to smashandgrab]

Hey hunny don’t let this get you down, it’s just another little blip on the radar. But I understand I am in pain and it doesn’t seem to fit with anything else other than the steroids. It could be as the steroids have started building up in your system that’s what had caused the pain. So no I don’t agree with their excuse and it could most definitely be the steroids. I had my blood taken on Friday so I have to go back to clinic on 21st January. Which is a pain in the ass as I was only going every 3 months because my bloods were so stable but at least they are keeping an eye on us. When you get to clinic ask how long you must stay on the steroids for now that your blood is clear. That way you know exactly where you stand. Please keep me posted and any other issues please don’t hesitate to message me. My names Caz it was a pleasure talking to you just a shame about the circumstances. If you would like to add me on Facebook please let me know. Lots of love 💗