Sticky Blood-Hughes Syndrome Support
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INR testing experiences?

Anyone on warfarin who is prepared to share their experience of INR testing? I usually am tested once evey 2-3 weeks and get the results by post on the Saturday (mu local Warf clinic being on a Fri morning; shame they can't make it Fri afternoon...! ;-) )

Two things about this; every now and then they leave me for longer, maybe 4-6 weeks only to find that my INR has plummetted (once down as low as 1.7). Have phoned them to say plesae don't leave it this long as it sdeems to go down so much . We are on holiday next week and they arein a leaving me for longer mood- not due next test till 26 Aug, last one was mid July. Had bad migraine falshes the other daya and dull headache (not anything like as bad as they have ben in the psat) adn wondering if it's gone down. Anyone got any expriences or advice? HAve looked into coagucheck device but my warf clinic (operates out of Jimmy's in Leeds) say they woould still expect me to get tested at the Friday clinic as well (sheesh). how can you get them to check you more often and then let you use of self-monitoring device?

6 Replies


I used the coagucheck machine - it was great. I spoke to my doctor and proved that my results matched up with the clinic results and then my GP accepted that I would look after my own blood! However they wanted me to go to clinic twice a week!

I would thoroughly recommend that you get a coaguchekS (or whatever the latest model is) as you can check anywhere (on holiday) and if you get a dodgy result you can call the doctors or the INR clinic and book another appointment. I would always have rathered knowing more than less!

please see the questions section as there is a conversation regarding stablising your INR.

Hope that helps



I tried to get my GP to prescribe the strips needed for your own machine. I managed to get him to but he would only allow enough strips for me to test every 3-4 weeks. I was not prepared to spend all that money on a machine I could not use to my full advantage.

My INR was very erratic from week to week and it was evident that testing me needed to be a weekly occurrence.

My surgery changed from venous samples to using their own INR machine and INR Star on the computer and luckily enough the surgery have allowed me to have weekly tests. However, the INR Star proves not to work for me. But like I say, I am not a computer.. I am a human being and cannot live according to a computer.

Now basically the nurses who do my blood ask me what I have been taking dosage wise and what I want to take for the following week giving me power over it, all they do is test my blood basically. It has worked much better that way for me.

We are lumped with other users of warfarin who take warfarin for a totally different reason. Whether that be heart valve replacement or some other reason, but what they forget that although we take warfarin, it does not stop our antibodies from fighting against it and so if our antibodies are particularly rife (and along with any other factors that affect warfarin) we need to adjust our dosage accordingly. My mum takes warfarin for a heart valve replacement and she can go up t0 4-6 weeks between testing, but she does not have that erratic INR because she does not have the antibodies.

I think its a case of teaching our closest medical professionals that we with APS are different and need to be treated individually for APS and not be lumped with every other problem that needs warfarin.



That's very useful. Annie and I appreciate it, thank you. When I get back from holiday will strat doing the squeakey wheel thing and see who oils me..! E_E


I have a similar issues with my local clinic. I firstly had to fight my PCT to allow me to keep having my INR taken instead of having to go to a local chemist to have the finger prick test as my consultant prefers my INR checked at hospital. Since the rest of the PCT swapped over to finger pricks my tests have started to fluctuate. They used to be every 2 weeks no matter how stable my INR was (obviously if unstable i'd be back sooner) but now the tests get further and further apart. I waas the oposite to you though Eliza as my INR usually goes through the roof when i'm not tested. I do have the ability to go back when ever I want though as say i'm early because i'm bruising and or more headaches etc. I'm also lucky in that our blood clinic is open every day till lunch time which helps too. Dont know if my comment gives any help as its just what I've experienced.


Kate xx



My gp surgery monitor my Inr, they use finger prick test and computer generates dose and date for next test, trouble is APS doesn`t work to computer programme! usually its been at longest a fortnight, but suddenly gone up to 6 weeks till next check.I`m not convinced and will go back sooner, cos I had problems in the past with inexplicable drop to 1.5 or shooting up to 5.4. I Use the the same chemist for all prescriptions and they have objected to this as well they say its way too long and feel 2 - 3 weeks is long enough gap. Pretty sure low at moment cos headache and vision trouble again. Nurse very good though. Think she will do extra test if ask.

Take care hugs Jessielou xxxxxxxxxx


Hi Guys i have enjoyed reading all your comments on this subject. Interestingly i saw my consultant rheumatologist only last week he asked how my inr's were taken i said venous samples but i was thinking of getting my own machine as my inrs have been running erratic. He said capillary sampling was not as accurate as venous specifically with antiphospholipid antibodies,,,not sure if this is based on new evidence ??? or just his opinion.. as so many use home testing successfully...

This then leads me onto my clinic... hmm and computers!...

recently i have noticed a trend of lower inr's and more concerning lower dosages of warfarin advised to take. I have spoken to the nurse specialist on 2 occasions about it in the past and verbally was told to alter my dose and ignore what the letter said. My inr tues was 1.9 and i just received the consultants letter stating my ACL's antibodies were significantly raised with recommendations of an inr at least of 2.5 so with this info i rang again because this time despite my inr level they still said to reduce my warfarin at the weekend by 1mg?? i was also feeling unwell with headaches, nausea foggier brain :) than usual now in its 3rd day so was feeling more concerned...

The nurse specialist apologised said there was an error with the dosing and went on to say the new computer system had my target at 2.5 but it didnt flag up an alert if my inrs went below 2 so she has since adjusted it to the target of 3.0 (my range was 2.5-3 so it seemed odd it would accept lower values??

From this experience all i can add is we know our bodies better than anyone else and most importantly if things go wrong we are the ones to suffer.. dont feel awkward to challenge or even if its out of hours and you are worried about your inr go to a walk in clinic or even a&e where the inr can be tested and you get piece of mind.. ps computers do have a place but they certainly cant replace human logic!!

love to all you bloggers

kathy d xxx


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