Sticky Blood-Hughes Syndrome Support
8,419 members8,577 posts

Bleeding from Warfarin

Is there anyone of you who has had a certified bleeding from a too high INR using Warfarin.

If so, at what INR, taken in the vein, at an approved hospital lab?

Kerstin in Stockholm

23 Replies
oldestnewest

I had a haematoma in my hip, INR was 7.9, taken from vein whilst in hospital. Hope this helps Kerstin. incidentally, the blood ran down my leg in the form of a large bruise over several days until it eventually reached my ankle.....quite a sight!

Reply

Sorry about that. Thank you for sharing. I remember you have told us before.

Kerstin

Reply

Sorry Kerstin, I hadn't remembered I had mentioned it before, just trying to be helpful re the INR level

Reply

But of course. I understand as it is important for all of us to know this illness and how it works.

Thanks for your help!

Kerstin

Reply

Sorry not happened to me as never had Warfarin, although my blood did play up on Fragmin, when pregnant with my first child, spent 4 months in hospital!!!

MaryF

1 like
Reply

Oh Mary....... how awful for you with your first child also. Fragmin is used as to body-weight I have learnt.

Thanks for sharing!

Kerstin

Reply

Yes I was on a drip for a long time, and eventually allowed out of hospital with Fragmin injections. It was 28 years ago now, and thankfully it was St Thomas' Hospital London, the next two pregnancies, and I was on it immediately so did not develop multiple clots again. MaryF

1 like
Reply

I hope you're ok Kerstin and not having a bleed?

I had a GI bleed but my INR was actually 2.8 at the time. It was when I first started warfarin. Since then it's just heavy periods and the odd mouth and nose bleed.

Kelly x

Reply

Yes, Thanks, I am ok and I have never had any bleed whatsoever, Keep INR 4.0. My periods were over when I got HS/APS.

The bleed could hardly be caused by a too high INR then I guess.

Thanks Kelly!

Kerstin

1 like
Reply

Aloha

I'm not sure what a certified bleed is, but I have been as high as 10.5 INR from a vein lab test, with no bleeding.

I can tell when I am at the high end of my range, by the taste of blood in my mouth from bleeding gums.

Kerstin from Hawaii

Reply

Aloha,

Hi Kerstin,

At what INR do you get bleeding gums? What is your high end of your range? When you had an INR of 10,5 in the vein did you tell a Doctor?

Bleeding gums is that from brushing your teeth? I do not know either what I meant with "certified", but I perhaps meant known by a doctor as a bleed. I wonder how we feel if we bleed in the brain or in the stomach. I always notify, when i go to the toilet, when my INR is high, that there is no bleed.

Thanks for sharing this! Keep well!

Kerstin in "Stockholm"

Reply

I posted a similar question regarding this a little bit ago for same curiosity reasonings. No one responded that they did, good luck, I think they just tell us this to have us be more aware of the possibility🙃

Reply

Just looked back it was somewhat different; please see " stroke while on lmwh anyone?" ( post I was referring to Lure2 )

Reply

Hi Wittycjt,

I am not so well versed in computer-languages perhaps but can I understand that you tell me that you have had a bleed form too high INR and Warfarin?

Kerstin

Reply

No, no bleed the doctors always warn us though: is what I've found out.....

Reply

Hiya Kerstin. I've just left a post explaining I had a bilateral rectus sheath haematoma (went black from chest to thighs) just in May. My inr had gone up to 8 as I was taking steroids for chest infection and at same time I transferred my husband by hoist into bathroom and did his personal care and pushed him back to bedroom as his carers were running late and I apparently tore all the rectus sheath muscles enabling the blood to escape through and I bled out totally. I had to have over 7and half hours of blood transfusions.

Reply

Hi,

I am sorry that you had to go through that. An INR of 8 in the vein is high no doubt. Hope you can control your Warfarin better these days.

Thanks for sharing and tell us all!

Kerstin in Stockholm

Reply

When first diagnosed with APS in 2014 at 61yrs, with triple very high test results, I was given warfarin with a INR target of between 3.0 and 3.5 (hospital/vein measures) weekly. Almost immediately I developed episodes of severe pain in kidneys alternating sides with severe bleeding for 3-4 months where hospitalizations were required. No episodes since this resolved (now 64) thank goodness...Doctors were not sure why this happened, although they since do not think it was caused by too high warfarin INR.

Reply

Hi,

I agree with the Doctors perhaps, It will take several weeks before you get up to that INR target of 3.0 or more. Strange to have a bleed.

Hope you can handle your Warfarin now and that you are seeing a Doctor who knows our illness and selftest with an INR high enough. We usually do not bleed from this illness as we have so thick blood and you are like me triple-positive with high titres.

Thanks for telling us all this!

Kerstin in Stockholm

Reply

I recently had a 6.1 INR after starting steroids, but then my INR,SOUTH went down to 2.4. After 4 days I woke with severe a do and renal pain and started to pass port coloured urine and clots and a temperature. It resulted in me been put on antibiotics for a UTI and ? Stones. The excessive bleeding continued for four days. I ended up at the urology dept. A CT scan showed no stones but I was passing clots. They tried to blame on the war far in, but I have had my INR's high many times before with no bleed. The antibiotics did the trick and my INR's came back into range.

Reply

Hi,

It can be very difficult to know for the Doctors obviously. An INR of 6.1 (in the vein) is very high but we have very sticky blood.

Thanks for sharing!

Kerstin

1 like
Reply

My husband had a g i bleed to following severe retching from a sickness virus. He had 10 units of blood and ended up witg AF not good at all 😩

Reply

Hi lindyloo 59,

On this site we all have very sticky blood (Antiphospholipidsyndrome) and need to be at a higher level than other people on Warfarin. So you can not compare our therapeutic INR-levels with those of your husband if he has not got APS like us.

I wish him good luck!

Reply

You may also like...