Sticky Blood-Hughes Syndrome Support
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Heamturia anyone had it?

HI folks and compliments of the season

I have just returned from a 3 day hospital stay for the above condition. I was bleeding so badly they had to reverse my warfarin. My INR on the 1/12 was 2.9 they told me to increase to 9mg. On the 15/12 my INR was 2.6. I was told to stay on 10mg warfarin. On my arrival to hospital my INR was 6.9!!!!!.....I am now back at home with district nurses twice a day. Has anyone had such a huge spike in their INR. I had been watching what I ate and could find no reason for this. I almost bled to death this time and I was told that because i have hughes it would be a good idea to keep a bag packed for hospital. I am now really worried about the future......any ideas Im getting scared now...

7 Replies

Hello, what a horrible shock, sorry to hear that. My understanding is that sometimes a kidney stone or underlying infection, often associated with a stone, not being diagnosed can set this off. I am sure if they can get to the bottom of what triggered it... things will settle down. Best wishes. Mary F x


You have got a good team, wherever you live. My INR'S are regularly in the high range, and on 10mgs. I have just recently had an INR 5.9 and developed an Haematoma in the palm of my hand , which caused severe bruising on my hand, fingers and way up my wrist. It has taken a week to subside. It all began when i started with a urinary tract infection and haematuria. Nice to hear you are well looked after.



I have had several bouts of haematuria, over about 3 years or so, lasting up to a week at a time and have been fully investigated, including several cystoscopies; one only a day after the bleeding stopped and which revealed no sign of the bleed site. Also ultrasound and a fairly recent CT scan of the kidneys; result awaited. Nothing was discovered in any of these investigations and he urologist believes that it is just being on warfarin with a target INR range of 3.8 to 4.2 that causes this problem. I have also had haemtospermia on several occasions and he feels that this is due to a tendency that i have to recurrent prostatitis, couple with a high INR and my activities as a long distance cyclist; when the weather and Hughes Syndrome permit such activity.

I had to come off warfarin for a week and go onto 15,000IU of Fragmin to stop the worst incident.

Best wishes and I'm sure things will settle down.


thanks everyone............i guess im still a bit shell shocked...


I was taking 10 mg a day except 7.5 for 2 days/week and normally my inr was 2.8. I do that because i eat a few cups of greens a day. But then I got diarrhea - which i thought was the flu, but finally decided it was blood. When got to the ER, they gave me vit. K to reverse the warfarin, and my inr was 7.0. I had done nothing different to cause it to rise to such a level. I was in the hospital for 6 days because of this bleeding ulcer.

So which came first, the bleeding or the high inr?


Hmmmm the old chicken conundrum.....

I was diagnosed in April 2011. I have had the condition for a lot longer. I have been getting progressively worse over the last 12 months. My INR is currently sitting at 1.0....i am on 7mg warfarin and 120mg clexane. My headaches are getting worse and my legs ache most of the time. I had an MRI in December 2011 and it showed that i have had at least 19 mini strokes. They said the bleeding in my bladder was caused by a blood clot.....a blood clot and my INR was 6.9???? to be totally honest I am getting really afraid...especially when you tell the medical at the ED dept that you have hughes, and they look at you as if you have two heads. I had been loosing 200-400ml of blood each time my bladder emptied, they didnt give me fluids for 7 hours!!! The outcome was."we will send you to a heamotologist,immunologist,rhumenologist and a urologist. So i am a little nervous......

When my INR was 6.9 I was on 10mg warfarin a week before it was 2,6.

I am so confused......what will tomorrow be like? Will I bleed? Will i create another clot, will i have another mini stroke? Will i still have a headache? Will my legs still be sore? Will i remember what day it is?

This is too scarry


Hi Mystynzi

sorry you have had these worries. It does not seem we know what will happen to us in these circumstances. Hughes Syndrome is just that - a mystery. I seem to have had bleeding from the bladder most of my life, with infections, even pyelitus many years ago with anemia, needing blood transfusions in hospital for a week, 2 months before birth of first baby. Then with birth of third baby bleeding again, in hospital for a week, but both babies were okay, except one was much smaller. Local urologist showed 49 redcells in tests, sending me onto a good renal physician in 2009, explaining frequency problems, blood in urine many times, as years, before one doctor learning I was allergic to so many antibiotics had given me a German tablet that helped. This physician gave me one that did the job- okay for 3 years, but think it might be coming again. It seems to run in families also, father and sister have such problems also. It used to be my nose bleeding severely in early years, also gums, then needing 2 curettes near to menopause. But of course the good thing is that we are all so different in our APS symptoms, so hopefully you will pick up well with no problems. Best of luck with all those specialists. Yes, as you say many doctors don't know APS, especially in my corner of the world, so I suppose we have to show them what we have learned in our own experience and research. Since 2007, I have bought all Prof Hughes and Kay Thackray's books to help me.


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