Sticky Blood-Hughes Syndrome Support
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Why !

My INR has been stable at 3.8/3.9 for a month spot on target. I've felt so much better too. It's been a relief not to be bogged down by terrible headaches, with less aches & pains in my muscles too. I've taken the same dose of Warfarin (18mg). At the same time. Then for no reason it's plummeted to 2.5.

I've not changed any medication or my diet. I'm not ill (I don't have an infection I mean lol) I don't usually drink alcohol but had a few brandys at a party Saturday- so why? Why has it dropped by 1.4 ?

Yes I am Lupus anticoagulant positive!

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I absolutely do not know. I thought alcohol should raise your iNR. Perhaps you eat something at the party.

The important thing is that you have a Fragminshot to take when it goes too low.

Best wishes from Kerstin in Stockholm

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Thank you. At the party I had a couple of sandwiches a few crispy and cake!

Hope ur ok K 💋

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If you are concerned, go and see your doctor!

With good wishes,

Ros

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Thank u. It was at the pharmacy I had the finger prick test so it's been recorded and I've been advised 😃

I just don't get why. I feel like I've been wrung out.

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You are not the first to have an INR change with alcohol, something perhaps new to your system at the moment? I hope you get to the bottom of it. Perhaps it is just one of those things, I hope it goes back to how it should be as soon as possible. MaryF

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I must ask you again; is there a difference with your vein-test value and your fingerprick-value? That is very important to know.

Also do you have a Heparin-shot to take if the INR goes too low (under your therapeutic level)? Try to keep the INR in range as you also notice you feel better that way like most of us on Warfarin.

Selftesting makes it easier.

Kerstin

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Thank u

There's hardly any difference between my finger & vein.

I have Clexane injections at home ready. Which I'm told to take when under 3.

My given target is 3.8 although my tester agrees I'm better between 4 & 4.5 so thats what we aim for.

I never feel great when below target. Am aching everywhere today. Can't wait until retest tomorrow.

I could buy a tester and at the moment get strips via NHS but they will stop doing that soon and I can't afford £70 a month for them myself.

Once I self test I leave the pharmacys care meaning when I need help I will have to get someone to drive me an hour to hospital Haematologist. 💋

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Yes, That a rather high therapeutic level. How often do you test in the vein resp in the finger?

Kerstin

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I was told once that one or two drinks probably won't alter INR much but if you binge drink it will go the other way. Maybe to your body a few brandys is bingeing if you don't normally drink?

I hope it sorts itself soon.

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I was told to think of one unit of alcohol as 1mg of Warfarin!

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That's what I always thought until bingeing was mentioned. It does seems to apply to me as every time I have three drinks my INR drops and I have 5-7 days of clexane until it is back up above 3.

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Oh I'll watch for that I don't drink very often

I may have a glass of wine with dinner just to thin my blood! 😂😂😂

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I will let you know if it happen again next time I have 3 or more😁

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I just found this on the NHS Information Page:

[Alcohol: Getting drunk or binge drinking is dangerous while taking warfarin. It may increase the effect of the drug, increasing the risk of bleeding.]

That's what I've been told. Alcohol increases the INR. When I've had a few drinks before it hasn't had any effect!

It's all so confusing 💋

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We’re all different and a body’s tools used to maintain equlibrium are many and still not totally understood. With me I have noted that my INR once fluctuated a lot. I kept a log of food and activities and I did notice a few relationships, such as sun exposure and higher INR. But after I went gluten free in 2004 my INR became much more stable. And since my trip to Cleveland Clinic Functional Medicine I have taken pre and peo biotics, And now my INR is boringly stable. Science is still exploring the connections among diet, gut biome and general health and medication. Dont make any supplement changes without discussing this with your doctor, but this might be something to explore.

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If I had your INR readings I would call them "blessedly stable"!

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“boring “ is how A Duke hematologist described my blood work.

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What are the pre And probiotics you are taking GinaD ?

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Perhaps you do not test your blood (INR) very often and then it is difficult to notice a change (up or down).

I selftest evey second day and I follow my INR closely. There is a difference perhaps if you test in a vein or in the finger so I have learnt that it is the vein-test Number that counts. I have a big difference between the vein and the finger (selftesting).

Kerstin in Stockholm

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Have you been under a lot of stress ??--This sets mine off horribly at times

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Not at all in fact I've enjoyed a wonderful holiday!

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Update. Latest finger prick test (a week later) after Clexane and increaszed dose of Warfarin - I am now at 3.1. Increased dose again. Target 3.8. Preferred 4-4.5.

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:-)

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