Kidneys and warfarin levels

[emmaj]

Hi all, I was wondering if anyone else knows if kidney problems can affect the way your body regulates warfarin? I went to hospital with excruciating pains in my back and left side and brusing, when i got there my warfarin was nearly 10, a scan on my kidneys showed inflammation, and blood in my urine, but no infection was grown. My warfarin was reversed and about 3 days later my levels came down, and after iv antibiotics the inflammation went down in my kidneys. I was discharged and a departmental meeting was held about me which i go to see a urologist about tomorrow to find out what decisions where made . The fact that it wasnt just an infection means that something else is going on,and its very worrying. Since the hospital event I have been unable to get my warfarin level right. I have started to have the same pain again and weeing blood,and dizzy spells, Doctors arent getting involved as its not an infection, yet im worried because its obviously more serious, im a bit panicky about my appt tomorrrow to be honest, and the consultant didnt think it was a one off - the conclusion at the moment is that the hughes is affecting my kidneys - sorry for the long one - thanks xx

[MaryF Administrator]

Hi, please let us know how it goes tomorrow with the meeting, the fact that a meeting has taken place means that views will be aired on what happened and how to prevent it in the future. Do you have Lupus also, and please bear in mind it is possible to have Sero negative Lupus! I am pretty sure they will want to review your anti coagulation. Try not to panic as you wait to hear, please write down any questions you may need to ask, as it is possible to forget on the days in these situations. I am sure members who have had similar with give feedback soon.

What they will be doing I am sure is thoroughly checking your kidney function as that can affect how the warfarin behaves! Let us know what they all say. Best wishes. MaryF

[Manofmendip]

Hello emmaj

I had several incidents of weeing blood, when I was on Warfarin, and all kinds of tests were done, including cystoscopy and ultrasound but no cause was found.

11 years before I was diagnosed with APS I had two bouts of hepatitis for which no viral cause was found but Prof Hughes said that it was probably due to clotting in my liver!

So, it is perhaps possible that you have had some clotting incident in your kidneys and, if I were you, I would mention this to your consultant.

Best wishes.

Dave

[MaryF Administrator in reply to Manofmendip]

Thanks for the fine tuning, learnt loads reading this bit! MaryF

[Manofmendip in reply to MaryF]

That's good Mary

[emmaj]

Thank you both - all through my pregnancies I always had blood in my urine - but nothing ever grew from it and i remember the midwife telling me this suggests problems further up the tract i.e kidney involvement - but no one in the pregnancy field ever seems to refer a pregnant lady on after the pregnancy to have these things followed up! I think its a problem ive had for a long time,though ive never had pain or visible blood in urine before - I have wrote down a list of symptoms as I know all too well the stress of appts to not ask the questions,or take in what was said!. Im due to start on plaquenil,just waiting for dosage from london, maybe that will help if it is hughes targeting my kidneys, but the dr in hospital wasnt keen on me starting it til this is sorted ou-vicious circle!xx

[Manofmendip in reply to emmaj]

Hi Emma

My urologist concluded that my haematuria was probably caused by damage to the web of small blood vessels in the walls of the bladder. This damage can be caused by something as simple as leaning on a worktop, as I stretched to reach something in a cupboard. For non-anticoagulated people any bleed, so caused, would be very minor and short lived but on Wafarin it becomes a much more noticeable incident; mine lasted for several days each. For me, stopping Warfarin for a week and using Fragmin stopped the bleeding. I now was fragmin all the time and not Warfarin and I have not had another incident since.

Best wishes.

Dave

[TJSTICKYBLOOD]

I'm not scaremongering but aps occluded one of my kidneys, this does not mean its happening to you but you could ask them to check the blood supply.

[GinaD]

I have never had visible blood in my urine, but I used to have (in my 20s) a recurring kidney/bladder infections which caused a lot of pain and very dark urine. But standard urinalysis tests usually came back negative for infections so, my GP's nurse decided I was a nut case and started refusing my calls. Eventually, a very bad episode resulted in a a quasi-diagnosis (this was 1976) of "something wrong with your kidneys." The diagnosing doctor (if you can call that a diagnosis) told me that he had seen things like this before and it seemed to be caused by "blood that is too thick." (Again, this was 1976) He advised me to give up soft drinks and drink water, "by the clock, instead of when you are thirsty."

I have followed his "by the clock" regime ever since and that was the last serious urinary tract problem I have had.

Now that I know (or knew before the Duke hematologists -- thats another story!) I have APS that "blood is too thick" diagnosis, which originally seemed very lame and dumb to me, now sounds very profound and prescient!

[emmaj]

Hi all,thanks for your responses, Had my appt today and the good news is it 'probably' isnt cancer. The bad news is that the consultant bets its another auto immune disorder affecting the kidneys. A normal ureter is 1mm and mine is 9mm-he says you dont often see one that size. Its either bergers or wegeners,and neither is good. I have to have a biopsy in June and maybe a stent,and then they'll make a decision. I knew it wasnt going to be ok as it was a fastrack appt,but on the plus side he has limited knowledge of auto immune problems with kidneys,and is willing to make a decision on clinical evidence also,which as us hughsies know is the hardest part of our 'invisible' disorders so im grateful he is a believer and i have to be grateful that this damage is visible so i dont just look like a hypochondriac to everyone!

Im licking my wounds a bit tonight and feeling sorry for myself,but no doubt tomorrow the pace of life will take over,and ill pop some pills,paint my face and put a smile on and get on with it-which is a good thing, ill keep you posted. On the upside he has told me that if i need pain management or the blood gets worse again then I can just take myself to a&e and he will do the biopsy on the monday and do it as an urgent emergency,so i dont feel quite as lost or scared,as the gp wasnt interested the other day. Im in safe hands at least - thanks again xx