Trouble getting INR Stable: I was on... - Hughes Syndrome -...

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Trouble getting INR Stable


I was on 10mg a day for 5 days & my INR was only 2.2. Then 2 days later it was 3.6. Then they had me do 7.5 mg & 10mg alternating. I started to feel great. INR jumped to 6.9. They had me take no warfarin for 2 days. It dropped to 2.2. I had to go back on the clexane & warfarin. Did 7.5 warfarin for 3 days INR 3.6. I have been taking 7.5 for 3 days & 1 day of 10 mg & on 7.5mg. I don't feel good with all these ups & downs of the INR. Does anyone else feel like this. Does anyone know of a home INR tester that is good. I would be helpful knowing my INR when I feel this way-headache, ache body, cloudy thinking....

Designer 16

14 Replies

Most of us who self test have a Coagucheck machine but it costs £300 and he test strips are very pricey too. That dose is very odd alternating between 7.5 and 10 mg as it's best to keep the difference as close as possible, so I'd add up the total of 7.5 and 10 over the course of a week and divide by 7 for the days in a week and that should be the dose you take. I found taking alternate 3mg and 3.5 mg made mine unstable where as taking 3.25 daily kept it stable. That said you do need a consistent diet too. what is your target Inr?

No advice but I'm in the same bobcat as you. In 8 ish months I've never achieved a stable inr. I'm doing 10 mg 5 days a week and 7.5mg the other two (Sunday and tuesday). So far on that dose I've been anywhere between 1.8 and 5.6. It's been the same dose for 5 weeks, longest I've ever had the same dose. I do weekly vein draws.

Lure2 in reply to Saralmac

Hi again,

Have you thought of switching to LMW Heparin if you have got Lupus Anticoagulant and if you do not have a good back-up from your hospital or Hematologist or Specialist?

I suggested it some time ago. Many here use it instead of Warfarin (Coumadin) even if it costs it can be the only solution. We must be properly anticoagulated.

I have forgotten if you are triple-positive incl LA.


Saralmac in reply to Lure2

I had been on it for pregnancy but my hrsmotologist didn't want me on it because of the long term effects. Also it's very expensive here, about $30/day and I have no drug coverage :(

Hi designer16,

I use CoaguChek XS by Roche here and I am triple-positive with Lupus Anticoagulant.

That is why there are difficulties sometimes to get the INR steady which is most important for us. I have been testing 5 years but as the INR is erratic and can change from day to day I test at home every second day. I am so lucky to have a Hematologist who knows HS/APS and have seen my difficulties and what happens when I am too low in INR.

I get selfstrips on prescription and also needles but I have bought my machine. There can be a difference between the fingerprick-test on the machine and the vein-value at the hospital-lab. For me it is bigger difference if the INR is very high one day. Usually it is between 0,6 or 0,8 - 1,1 between the two tests. Remember we are all different so what is true for me is perhaps not true for you. Trial and error so to say.

If there is a difference you must find out before you start selftesting and monitor by yourself. CONSTANT eating (incl the amount of green vegetables) is the key and making protokols and notes every day of everything so you know if your memory is not so good all days. Write down INR, date, Vein-values, drugs, exercise, viruses or bad stomach or whatever that will change the INR.

Good Luck!

Kerstin in Stockholm

When Inwas on warfarin, this would happen occasionally - especially after I'd been therapeutic and then had to stop warfarin for a surgery.

A few tips I followed (hopefully not teaching you to suck eggs):


Don't eat cranberries. Or grapefruit.

Vitamin K throws it off, so a lot of that (I think I'm right in saying green leafy veg) might give variation.


Any other meds ALWAYS interact. I went through a phase ofnthe doctor's trying to choose alternate medicines, that their screens didn't instantly flash up as causing a clash. I don't know if you are on anything else, but it might cause a spike.

General stuff:

Some people find it hard to get a stable reading.

Taking half mg doses was laughed out of town by one pharmacist - "how do you take a half?" I Used to snap tablets in half. "What if you get all the warfarin in one half one day and then none the Next?" - She explained about pill manufacture, they try to even the does, but they're not guaranteed to have an even dose across the tablet.

She suggested similar to that above - even it out to whole numbers across the week. I'm not sure how you would take 0.25mg...

I hope you get it fixed.

0.25mg is a 0.5mg cut in half

Lure2 in reply to Tucson

For me 1/8 of a tablet. Could be difficult to fix. It is easier with 1/4 as there is a score for 1/4. My tablets are blue.


Do you only have one strength of tablet? We're usually given a range of strengths 0.5mg, 1mg, 3mg and 5mg each strength is a different colour.

Lure2 in reply to Tucson

Hi Tucson,

Sounds dangerous in my ears. Different colours and different strengths.

In what country do you live?


No it's very simple and means most people don't have to cut tablets up they just take a mix of tablets to give the right dose, so for example 7.5 mg would be 1x 5mg Pink, 2x 1mg Brown and 1x0.5mg white. So you can tell at a glance what you're taking. I'm in the UK.

I wonder if your Doctor you see for vein-draws, at the coagulation clinic, knows how we with HS/APS react on Warfarin and how important it is for us to be in target.

If I change the dose I do it with 1/4 or 1/2 of a tablet but remember we are all different and I only take 5 mg of Warfarin per day. 10 mg of Warfarin and 7,5 mg is a great difference. Ask for LMW- Heparin to take when your INR is under your therapeutic range!

It also takes 2 - 3 days or longer for the Warfarin to "kick in". How much Warfarin we take is individual but the INR number is the same for us.

I think you should have a serious talk with that Doctor and ask him politely if he thinks you do too drastic changes with the Warfarin?

Perhaps he does not know how his sister is monitoring your INR and Warfarin-dose. He should know however! The Doctor is responsible for your coagulation.

Have you found out if the vein-draw and the fingerprick draw are the same ? Must be taken within a couple of hours. You have to do it several times.

I may have asked but forgotten if you are Lupus Anticoagulant positive?


Hi designer16,

My last answer was meant as an answer to your question and not to Tucson. I am not sure it did work that way.

Good luck with the selftesting!


My INR has swung between 2.2 and 16,8

My target is 4.0.

My dose ranges between 17 and 20mg Warfarin.

I never differ in more than 1mg a day unless on the day of the vein test it’s too high and I need to miss a dose.

I bruise horrendously with Clexane (we were considering swapping) but it was agreed not to do that. I have a photo which I showed the specialist - I could tell she was not expecting to see it that bad !

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