Sticky Blood-Hughes Syndrome Support
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INRS up and down, weekly tests since April!

Well I am just about fed up of having to attend the Haem every week, I know that they have to keep an eye on me, but I feel that nothing is in control here. I do not know whether anyone else has been prescribed 0.5mg, but I have not used these since starting Warfarin, all that happens is either 4mg or 5mg I feel that it is not fine tuned. I want to convey my concerns next week at an official appt with Haem and I will say to the St T team in a couple of weeks that I have been so unhappy. My INR yesterday was 2.7 (normal should be 3-4) and I thought I was a little grotty, strange tight head etc, but I thought well I am having nose bleeds, gums etc and this usually happens when my INR is higher. It would be interesting to know if there are any APS patients who have tried Warfarin and how they have felt being on it and whether they were changed to something else. I had been taking Aspirin up until op in March and then I just had Heparin, and I still suffered from TIA - since having the operation I have just felt so bad all the time, like funny heads etc, whereas before even though I had a low platelet count, I took Aspirin and I had occasional head problem but nothing like now. I want to go to Australia to see my sister whom I have not seen for7 years and I have to go so I want everything to be stable.

Just hope we get some sunny weather here today, as feel so much better when that bright glow is there and I forget my bad head etc.

Look forward to hearing from you.

17 Replies

I have been taking warfarin for over 12 years now and have what would be called a stable INR usually around 3.5 but can drift as low as 3 and as high as 4 without changing my regular dose.

A stable INR is all about consistency. Taking your dosage regualarly the same time every day (I usually am within a 15 minute window daily as I have an alarm on my mobile ) When you test your INR it also should be performed at the same lab and also within the same time window when you test. If you do this you have a bench mark for when you test at a different time of day of day.

If you test in the morning at noon and late afternoon all will be different - that is the nature of being on warfarin.

The above is not all you need to be consistant with, when you eat your meals they too should be regular in the time they are eaten. What you eat will impact how your body will metabilise the warfarin.

If you have an out of range test a dosage change should not occur but a second test a few days later up to a week later should be done, if the result is still out then consider a dosage change.

Dosage changes should only be in small increments. If the INR result is too high I wll not miss any dosses even if instructed by my doctor but reduce my dosage for a couple of days then resume my normal dose.



I have been on warfarin for 12 years and tested every week. INR should be 3-4 target of 3.5 but never get more than 2 weeks within range can vary between 2.3 to 5.3 usually lower dont understand it at all.


Did you have a positive test for the Lupus Anticoagulant? I have been told that INR levels can swing a lot if you are positive. Self testing is the only way to be in control I think as long as you are knowledgeable about when to test, diet etc.. I test before dosing in the evening and try to test weekly although sometimes it's 3/4 days. You need the support of your GP of course.



Yes I am positive - how do you get on with self testing? Is it accurate? The cons at St Thom gave me a DVD to look at then I have heard that they are not really reliable.

Look forward to hearing from you


Hi my range is 3.5 to 4.5, I think the biggest time gap between tests has been 3 weeks for me. I had test this morning and got a call this afternoon to not take anything tonight and reduce dose as of tomorrow and go back next week.

I take 0.5 tablets but my INR is still all over. Maybe if I sat down and did a diary I might be ble to tfind out why ( although I don't think my life changes much).

Like you I am fed up with the changes to my dose and that I'm rarely in the target zone. Some times I feel like ignoring what they say because I can tell that it will swing the other way but then if I do that their records wont be right and they'll never be able to get my INR under control.


a good habit to get into is to write down your dosage everytime you take your meds. Several things occur as a result, you have a history to look back on, you realise if you have missed a dose, it prevents a double dose. Either of these last two options can cause the inr to swing and if you dont have a history to look at it is difficult to remember if you have made one of these simple mistakes.

I record my details into a spreadsheet and have over 12 years of details on record of every dose I have ever taken what and when any dose changes were made.


Hi, I have been on Warfarin since a PE in April last year, although my docs want my INR 2.5 to 3.5 preferably on the higher end. My normal dose is around 8mg although when i get my chest infections my INR ranges from 2 - 4. what has been happening with me is, I go on a dose say 4mg, this keeps me okish for a month or so, then INR drops I need to go up say to 5mg then it starts again, so like I say I am up to 8mg daily now. when on steroids though beware it really throws your INR out. as can say spinnach, cold remedies and so so much more!



Hi daisy,

I have my INR tested every week as my INR fluctuates and i think it is one of those things but you can look at other options like a couag machine or talk to the doc about less test but if it fluctuate like mine docs tend not to do this.

Regarding the 0.5mg last week lol



Dear Daisy

I have APS (positive Anticardiolipin antibodies test, negative Lupus test) and been on warfarin for 10 years nearly. My target INR range is 3.8 - 4.2. I self manage using a CoaguChek machine (I have used both the original type and the current type). My INR has periods of say a week when it is stable and the it can suddenly go up or down. Sometimes there is a reason for this, Brussels Sprouts are high in Vit K and knock my INR down dramatically, whereas going for more than a couple of pints of beer with a friend can have the opposite effect. It is difficult to be consistant in what one eats, the real world is not like that.

I use 0.5mg tabs as well as the normal 1, 3 & 5 mg ones. My Haematologist has always counselled against trying to micro-manage INR as warfarin dose changes can take a couple of days to have an effect, by which time you can overshoot or undershoot. He and I decided that it was rather like Fred Dibnah's traction engine steering, which was by chains and was very imprecise; Fred frantically winding the steering wheel one way only to oversteer and have to wind frantically the other way again, ad nauseum.

I also, on Prof Hughes' advice, take 75mg aspirin as well as warfarin.

Even being on these meds I still get clots and TIAs and I am going through a rough patch at the moment, with 'funny turns', which are suggestive of inner ear balance issues (possibly ischemic) and atypical migrainous symptoms.

I am seeing Prof Hughes again on 15th February.

Best wishes.



Daisy you have my sympathy my INR's have been all over the place in the last couple of months.

If they went to 5 or 6 could cope with that but they have been going from the 2's into the 10's I have no idea why.


it is good to hear of people with their funny INRs - I keep thinking is it all the tablets that I am taking that give me dizziness etc. Like the Heptologist said the other day, being as on about 24 tablets this is difficult to rule out, however, I was speaking to a doctor not long ago and he said if I feel like this, then take them at night. Obviously Warfarin has to be a certain time, did not realise until one said it must be a definite time. I was listening to Radio 4 on Tuesday I think and it said about the tablets being taken at night time as more often than not, they can cause problems. I have to go on the i player again and listen as there is a professor who is carrying out a study. When I went for my appt with Hept, I couldn't get my words out and then they were the wrong way round, good job he knows me!!! Thank you for replying everyone.


I have APS.

My INR is very erratic - after my diagnosis, following foetal loss (16 years ago), originally just taking 75mg asprin, then TIA in 2004, & onto warfarin.

Latter part of last year my INR went from 3.2 to 12.6 for no particular reason.

Now having weekly tests, so at least I know I'm monitored.

Someone I know who has APS & Lupus, has a coagucheck machine and checks herself sometimes 2x a day, not good in my personal view.


My INR is crazy. I have had warfarin since 2004 though I am negative diagnosed by Prof Hughes. He set my range at 3.5 -4.0. I have my own machine. Mostly all my symptoms come back at anything under 3.0 but I cope around 3.2. Until this year I tested maybe every 2 weeks or when I felt bad to check where I was so I could take heparin. I am at that funny age for ladies, 50, and it is crazy and all over the place so I test every other day. I am careful with new meds even vitamins etc and know that vitamin K foods cause it to drop but some days I don't have a clue so right now I am blaming hormones.


It was good to hear that I am not the only one with crazy INRS - I have been trying to leave my other medications until later so I can check whether these tablets are giving me funny turns, but experiencing still the headaches, tightness etc. I have yet to find out more about INR machine


Your INR should be 3-4 you say so I would recommend talking to them about venous samples because if you are having fingerprick tests, for some people they are not accurate above 3 and you could maybe be having your dose lowered when it does not need to be lowered, which could cause your INT to drop.

I have found a big difference between the fingerprick reading and the venous sample.


Thanks for replying - I now have venous done at local Haem ward because the fingerprick tests done at surgery at GP was way out, despite me explaining to the phelbotomist, even my consultant said it was out hence me going to Haem, also I am pleased in a way because they really do not understand my problems and the surgery only deal with people who have had heart and nothing like APS. Despite this I attend St Thoms.




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