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Sticky Blood-Hughes Syndrome Support
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INR testing- how often do we all test - i need literature

i know i have read some place that some people with our dis order have to test bi- weekly - what i need guy's is some medical statement's - my Dc. now after 2 years is messing with my schedule and her say'ss i don't warant tetsing as i always have --- he wants to push me out a week or better . when twice this year my inr went crasy landing me in the E.R.-- i know i have read it but i need it asap -- he also want's me self testing and i am L.A. positive { he said he didn't know } it's all over my records -- he has read some things and now he is an expert - i need to stop him in his tracks --- need some help with anyone with some medical info --------------------------------------------------- trying to get back to my Rhuemy but no responce- need help ---- pea brain / with cramps jet

15 Replies

Hi Jet

When I was on Warfarin I tested daily, unless I was on a roll of steady numbers, then I went to every two days; I self tested and self managed my dose too.

Now on Fragmin and feel so much better. :-)



I go to an anti coagulant clinic usually once a week, sometimes my apps are 2 or 3 weeks apart, but rarely. Self testing was mentioned to me a few years ago, but I'm not keen to be honest! Sarah x


I think it varies from person to person so no real answers.

Initially it was twice a week and then weekly and then every two weeks until I was getting fairly constant readings and that took over a year. Then i was monthly for a couple of months but my last test came back too high so doing another in two weeks.

I think micro managing can be just as dangerous as not enough so finding the happy medium for each person is the challenging goal.


I have a friend on warfarin (cardiac related, not actually diagnosed with Hughes), and he is tested once a month.

I have never had stable readings since starting on warfarin 30 months ago. I think the largest break I have had between testing is 2-3 weeks. But that was to fit around holiday requirements.


I self test weekly or when I feel INR has dropped.

INR only varies if I eat green veg, spring onions, califlower, so foods with vit K in. Due to the fact I don't eat them regularly enough.

Hope you get sorted soon.


Hello I have to be tested weekly but if my INR is to high or low then it goes up to twice a week x


I self test and self dose. I test every other day as much for my piece of mind as anything. Have done since 2004.

My INR is not stable sometimes due to vitamin K foods other times I have no idea.

I would never give up my machine and control and fear the day the GPs may stop giving test strips on prescription.

I would accept self testing if it has been offered to you.


I've only been able to find references to frequent testing (2-3 times a week) during initial stages of use, with reduced frequency depending on stability of results. That may be interpreted as meaning frequent testing could reasonably continue if INR is unstable.

tinyurl.com/d2sh8jo Is a link to a word doc at gp.cardiff.ac.uk on INR testing

At australianprescriber.com/ma... is a paper which states under the heading "Maintaining anticoagulant treatment":

"The frequency of monitoring INR once the dose is stabilised should be determined by the clinical situation. Initially, patients will require a few tests each week, but this can be gradually decreased to once a week or once a fortnight if the INR is stable." And goes on to say 4-6 weeks is reasonable if INR is very stable.

None of these are specific to warfarin treatment with APS, and no papers I have seen make reference to any testing frequency specific to APS.

One other factor which speaks against a high frequency of testing is the simple fact that changes in warfarin dose typically take 2-3 days to manifest, though changes may be noticed within a day. In my own case, I have generally been advised to wait at least 3 days before re-testing after a dosage change for this reason.

In your case, though, I presume your desire for frequent testing is the result of your past experiences with "critical value INR" (i.e INR well out of range) rather than managing dose as such. The following page provides some stats on testing frequency in this context:


This claims support for weekly self-testing. Unfortunately I can't find the source paper on the net so what's not at all clear is whether any consideration was given to stability of INR, which is (as shown in the papers above) a key factor in determining appropriate testing frequency.



When I was in hospital they tested once a week now I'm being managed by an anti-coagulation clinic and it varies depending on my reading just had a high one so it'll be a week between tests longest I've gone is 4 weeks


I've been on Coumadin for 15 years. at the beginning, while I was getting my levels set, I had to test as often as twice a week.

Now I test once every 4-5 weeks. If there's a issue with too high or too low, i adjust the dose and test again in 2 weeks.

We keep my INR between 3.5 and 4 and make sure the DDimer is at 0


Hi jetjetjet,

I live in Stockholm and i have Lupus Anticoagulant. I have had a selftesting machine for almost 1 year now.

Like Dave i test every morning. Now for the first time (1 month since the last chegue) I go to chegue my INR in the vein at the lab who send the result to my hostpital. Before I did it once a week and twice a week. If I think it is necessary I can take an extra chegue via the lab.

Without the machine my life would be more difficult. I eat more K-vit food if the result is too high. Otherwise i stay at about the same foodintake.

I think (but I am not sure) that people with APS and who do not have Lupus Anticoagulant have easier to control their INR-levels. I can also change warfarin tablets but I am very sensitive .I have help from the hospital.

In February I had the flu and my INR went high and low

and all over the place.

If you can get a machine. Take the chance and try it .Good luck. Kerstin


I have been tested weekly for the past 14 years. If too low I know have heparin as well as wafarin.


I have been on Sintrom (acenocumerol) for 3 years, initially I was being tested every 2 weeks, now they do it once a month. I recently bought a coagucheck xs machine from Roche and have a course booked to learn how to self test and self dose, this will give me much more independance from the health care system and also allow me to manage my condition for myself.


I test every other day, on Prof Hughes instructions. I have learned not to over react in dosing changes because it takes a day or two for warfarin to kick in, but I do quickly pick up when something is going on such as present course of Fluconazole which has had more effect upon INR than anything in the past.

I do not think our use of warfarin, and the frequency to check our INRs, can be compared to any other uses of warfarin which seem nothing more than a little insurance. Our INRs can be critical not just nice to control. Of course, you have to have it set correctly for your conditions in the first place!


usually every week, my inr doesn't seem to settle on the rat poison. (warfarin)


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