Warfarin and INR

[DaCoach]

I been taking Warfarin for 2 years. I am now taking 18mg. daily. I have APS. My Dr. keeps my INR between.0-3.0. He say this is a scientific number and that it is right. But when I get cut, I don't bleed for very long. I don't bruise easy, so they scares me that I am not anticoagulated. Any thoughts??

[Manofmendip]

Hi

I can understand your concerns.

Where are you from and who is managing your APS, i.e. do you have a consultant?

Dave

[DaCoach in reply to Manofmendip]

USA, Illinois and I see an oncologist. No consultant.

[Ozchick]

How often do you get your INR checked? Between 0-3.0-is this a typo? (Not, for instance , should it be2.5-3.0 or similar?)

[Tucson]

I have an Inr kept between 4 and 4.5 I never bleed much if I cut myself and nor do I bruise much at all. Your Inr range is a bit odd as 2 to 3 would be more usual.

Mine is high because Aps has caused me to have several strokes, the last one was with an Inr of 4, I also take Aspirin with the Warfarin.

Have you had any clots?

[DaCoach in reply to Tucson]

Yes my deep veins in right leg are all blocked with clots.

[WendyWoo50]

Hi, that's a strange INR ? I think you will find that the standard INR for those with APS is 4.0-4.5.

When mine drops below 4.0 I suffer horrendous headaches and pains in my head as well as hurting/aching all over my body. My words come out wrong and I can't function properly at all.

When it drops below 3.0 I inject Clexane. I can't function at all and struggle to get out of bed.

I think the INR is trail and error to see what level you feel the best at. Don't worry about the amount you take, it's the result that matters. I take 20mg usually, which I think is a lot but if it keeps me well & that's the main thing.

It sounds as though u need a good APS specialist. If ur INR wasn't a typo, please pm me and I'll tell you what I did to get them to raise my target. I did lots of research, which I'm happy to share. 💋

[DaCoach in reply to WendyWoo50]

Thank you. My INR range is 2.0-3.0

[Lure2]

Hi DaCoach,

I know you are Lupus Anticoagulant positive and that you worry about your leg and that you want to continue to run and bike again.

First of all you must have a close contact with a Specialist of autoimmun illnesses (usually a Rheumatologist as it is a rheumatological illness but also a Hematologist as it is a blood-disorder). I have forgotten where you live.

Those Specialist are very rare and that is our job to find one actually.

Anticoagulation is very very important and with Lupus Anticoagulant it can be difficult to be on Warfarin as the vein-value and the fingerprick-value often differ quite a bit.

I am LA and selftest here in Stockholm and if I have a fingerprick-value (INR) on my machine at home of 5.0 I have if i test the same time in the vein, an INR of around 4.0. I feel best when my INR is around 4.0 in the vein and it is the vein-value that counts!

Look for a Specialist and that number of an INR 0 - 3.0 I do not understand at all. When we are not anticoauglated at all we perhaps have 0,1 in INR. Most of us feel very very bad under an INR of 3.0 or 3.5. How much Warfarin you take is not interesting as that is individual from person to person but the INR is very important to keep steady and in range.

I think you should read about this illness and stay with us here as you will learn a lot from our wonderful members around the world.

I like "Sticky Blood Explained" by Kay Thackray. She has got HS herself and writes about how it is to live with this illness. KNOWLEDGE is POWER !

Best wishes from Kerstin in Stockholm

[GinaD]

Someone who is not taking any anticoagulant would have an INR of 1. So a number of zero would logically be expected of people with bleeding disorders of blood that is too thin. Which is the total opposite of us.

[Lure2]

Hi DaCoach,

What are you going to do to get your INR higher? I should say that it is dangerous for you to go around with your symptoms and not be correctly anticoagulated.

You could also ask to have LMW Heparin instead of Warfarin (suggested by APsnotFab earlier) as you are a cyklist.

Have you thought of getting a Specialist?

Kerstin in Stockholm