Self-checking your INR

I have had it triple confirmed that I have APS with some other autoimmune condition (I believe SLE, and it fits). Spoke with my thrombotologist two weeks ago and enquired about self-testing. She said she would investigate for me and it could be a possibility if we ran a trial dual testing period. I am going away for the best part of a month to a remote part of the country where a visit to an anticoag clinic will take a whole day, and as the only driver will ruin the holiday for my family. Ideally I want to get on my own machine whilst away so I can self-manage (fluctuating INR as a result of alterations to new medications mean at least a weekly test, and camping diet is different to home diet so is likely to have an effect).

Please can someone tell me how to get this organised? Unfortunately my thrombo is on leave for 2 weeks. I know I need to ask my GP to prescribe the strips, and I don't anticipate this being a problem.

Holiday or no, with 4 children and feeling rotten as I often do, the thought of weekly trips to the hospital for the rest of my life is daunting and depressing me.

:-(

13 Replies

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  • You will need to speak to your GP or anticoagulant clinic to see if they will support you. You will also need to purchase the machine. The clinic at my surgery do support self testing and I have a contract with them. Twice a year I have my machine checked and in between phone the clinic with the result and am told what dosage to take. You will also need to contact your local council about disposal of test strips and lancets.

    Test strips are a postcode lottery. I can no longer het them on prescription which I did for 5yrs so you need to check. I self test not self manage which I know some do, but I wouldn't feel confident in doing this because of warfarin being such a dangerous drug

    It does take a while to get used to the machine.

    Hope that helps.

  • You will need to speak to your GP or anticoagulant clinic to see if they will support you. You will also need to purchase the machine. The clinic at my surgery do support self testing and I have a contract with them. Twice a year I have my machine checked and in between phone the clinic with the result and am told what dosage to take. You will also need to contact your local council about disposal of test strips and lancets.

    Test strips are a postcode lottery. I can no longer het them on prescription which I did for 5yrs so you need to check. I self test not self manage which I know some do, but I wouldn't feel confident in doing this because of warfarin being such a dangerous drug

    It does take a while to get used to the machine.

    Hope that helps.

  • Hi, I selftest and test at the lab only every 6 - 8 week now. It takes some time to learn and handle the machine. So if you are going on vacation very soon it is not a very good idea. As Panda60 is saying; it is a dangerous drug.

    I absolutely think you shall try to selftest. Makes APS easier to live with.

    Best wishes and good luck from Kerstin in Stockholm

  • You do not say when exactly you are going away on holiday, if it is really very soon, the reality is that you are not going to be ready to do this by the time you go away and not self manage anyway, that takes time and confidence.

    My suggestion would be to ask to swap over to heparin for a month or two to give you the freedom whilst you are away. Then when you come home you can set up the self testing or not ( you may like the heparin). At least you will have a holiday that does not make you feel like this illness is taking over your life.

    Good Luck.

  • Is there a website to find out about heparin? I too would like to be able to travel for periods longer than a month and am new to APS. I'm also LA positive so even if I can manage to get approval for a machine, it will be a while before I can be away from lab for that long just yet.

  • I self test and manage my own Warfarin doses. My GP and Warfarin Clinic will not support me although my GP is willing to give me prescriptions for test strips but not Warfarin. I get my Warfarin prescriptions from my specialist at the hospital as they fully support me self testing (as does Proffessors Hughes and Khamashta). I bought my Coaguchek machine (about £300) and worth every penny! At first it was difficult as I had no support from my GP but hospital Doctor was helpful but not easily accessible. I've been self testing for almost a year now and have very good control and feel so much safer. My Coaguchek machine is calibrated every 3 months at the hospital and has been very accurate so far. I would take APsnotfab's advice and try Heparin until you return from your trip. Good luck!

    Avril

  • Thanks all. Holiday will be too soon to get self testing I guess. Thrombotologist said two werks ago it could be a good option and then could phone in results to the warfarin nurses. It is going to be a real pain to lose at least three days of pur much needed family holiday (as the children will have to either come with or stay stranded on camp site with relatives) so would have been excellent to get going with this.

    I see the idea of heparin, but really dread self dosing and injecting again as I had a huge struggle to cope with it whem I had it for a bridge.

    I guess I'll just keep asking the drs and nurses to help me get started on this. If not this year then would be great eventually. Visits to the clinic take almost all day and require childcare help, and having to go weekly is a real pain.

    I'll be on warfarin for the rest of my life so will be great to get some control and independence soon.

  • Hi yes self testing would be a good idea for you, but in the mean time with your hols coming up the heparin unfortunely is the best thing to suggest for you. Will your inr not be stable by the time you go? how long are you away for? just wondering if staying on warfarin would be ok if your inr is stable enough & not away for too long? Sue

  • Hiya. I have yet to manage 3 weeks in range in a row. Unfortunately illnesses and changes to other meda keep messing it up.But honestly, injecting heparin would not be wise when camping. I'll see what they say tomorrow when I hope to speak to staff at the hospital. Pretty sure my gp would do the scripts for the test strips.

  • are you LA positive ???

  • jetjetjet - yes, I am. How lucky! :-/

  • I got my test kit about a year ago. I travel a lot overseas with work and it's amazing for me. Every few months I go to my GP and the INR nurse does a test at the same time as I do to calibrate. I get strips on prescription. I paid for the test kit which is expensive but I didn't have to pay vat. It's really freed me up. Plus over Christmas I did a couple extra tests after eating a few more than normal dark green small round odour inducing veggies and other warferin / vitamin K changing food/drink. I'd recommend self testing to anyone. I can also test at a weekend.

  • Thanks all for the replies. I have ordered the machine and my GP has confirmed he will prescribe the strips. I am planning to confirm this move to my warfarin nurses and even if I can't rely on it for this break it will be good to have it to make life easier going forward.

    I feel more positive taking over these tests. I don't plan to self dose, but hope I can just call results in to clinic.

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