Is my INR at a safe level?: My ideal... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Is my INR at a safe level?

Mel1270
Mel1270

My ideal therapeutic INR is 3-4 but when i reached the right level i had a spontaneous abdominal haematoma so now my INR has to be between 2-3. I am now worried that i'm at higher risk of thrombosis and i don't know what i should be doing about that. My rheumatologist says it's a risk i have to take, does anyone have any suggestions?

10 Replies
oldestnewest

How frustrating and stressful! I wonder if heparin injections might be a better alternative for you? Might be worth asking.

for who ever set your inr lower pose the following: if I follow your advice and throw a clot (which has the potential to kill) you say oops sorry, I cannot take that risk. Until you can provide a complete answer on what causes APS and control it my INR should remain above 3.

Contolling APS is knowing what triggers ACA's and LA's and at this point they cannot answer with any certaincy, so you should be treated as if permanently having the condition.

In general terms I have heard that there is a potential for a clot ratio of 1 in 10 for every dip whilst the ratio of a bleed is 1 in 100 for a high INR. I know which side I would err on but doc's are usually conservative and err to the down side.

lucky1

Mell

I agree with lucky1. I would sooner my INR be kept right to prevent clotting issues with Hughes Syndrome and take my chance on a bleed.

I have coe off warfaring a few times to have surgical procedures but I always go onto Fragmin Injections, at the correct theraputic dose for my weight (15,000IU per day for me) and keep these going when I go back onto warfarin until my INR is back in my target range of 3.8 - 4.2.

Dave

Hi Mel

I too agree with lucky, push with rheumy for higher range and if they will not listen, find one thats prepared to learn. We all understand the potential for a bleed but the ratio of risk has to be balanced and we are more likely to clot at lower ranges than bleed at higher.

Take care gentle hugs love Sheena xxxxxxx :-) :-) :-)

Hi Mel

I agree with all of the above - why not with your inr of 3 - 4 can't they do regular bloods to check your platelets to ensure you're ok for not bleeding while keeping you safe from clots - also could you be a candidate for pradaxin? the new drug replacing warfarin in some patients - but not for people that have suffered PE.

Smiles

Lesley

:)

Hi mel,

I agree with Lucky i really hope you get this sorted soon

Paddy

I agree with your Rheumatologit Mel. In May 2009 I had a bang on my right knee which caused a large haematoma into my knee joint and leg.. I was lucky not to loose my lower leg. My INR control was continued afterwards at my previous level of 3.5-4.5. Then in September of the same year I too had a large spontaneous abdominal haemorrhage/haematoma resulting in several 'lost' days in ITU and a close encounter with the Grim Reaper. My INR control is now 2.5-3.5 and I would rather have a foggy brain and risk another clot than repeat 2009.

I saw Proff.Hunt at St.Thomas' last month and she advised that I should continue with the 2.5-3.5 control level. I should perhaps add that I have been taking continuous Warfarin for 28 years, I am 68 years old and I guess my blood vessels arn't as tough as they used to be.The CNS symptoms do cause considerable discomfort at times, but I've lasted the last couple of years without any further major problems. Maybe some of the new anticoagulants will provide us with another option in the near future.

i have aps and had a stroke just over a year ago - have only ever been on aspirin and diprydimole - how do i know my levels are good and I wont have another ?

Lesley_D
Lesley_D in reply to xxtracyxx

Hi Tracy

I would suggest you speak with your GP if you have a good relationship with them, and ask that very question. Ask them if you should be a candidate for Warfarin, and what your INR should be - out of interest was your stroke due to a bleed or clot? maybe, that may be a deciding factor I don't know.

Smiles

:)

Lesley

xxtracyxx
xxtracyxx in reply to Lesley_D

thanks, it was a clot but I will be asking more questions

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