Sticky Blood-Hughes Syndrome Support
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Peoples experiences of self-testing needed for the AntiCoagulation Self-Monitoring Campaign (ACSMA)

Hi everyone we need your help.

The ACSMA website is up and running but we need peoples stories of self-testing to put on the site. They can be totally anonymous or with just your christian name or you can tell your story and share it with the media, it will be up to you.

Please think about helping us, we are receiving tremendous support and are meeting with Ministers, MPs and Clinicians all the time, but we desperately need people to tell their stories to bring the campaign to life.

Email your story to or post on this site.

From antiCoagulation Europe - Thank you in advance for your help.

11 Replies

Hi i am happy to help in any way i can. I am relatively new to self testing but wow what a difference it has made to my life!! it great as i have my GP's support and warfarin clinic support. To be without it i dread to think how i would cope as i now got the confidence to travel alter my dose as needed!... to me it is like being a diabetic who needs insulin - we need the same control to prevent unnecessary hospital admissions and avoid ill health! for me if my inr is below range it makes a massive difference to my coping on a daily basis that effects home and work life so it is so liberating having my own machine kathy x


My wife Stella has been self-monitoring for about 18 months.

It has been liberating for both of us.

I no longer have to drive her to hospital once a week or fortnight.

We no longer have to sit in the anti-coag clinic for hours on end in what is a horribly depressing place.

So she is in control of the drug administration rather than the drug administration controlling her.

No doubt she'll be along later to give her own point of view too.


I have been self monitoring for about a year now. Besst thing ever support fromGp and the warfarin clinc, went on holiday and could self monitor on long haul flight. If I want to check machine is reading correctly the warfarin cynic will do a blood test to compare readings.


i am in USA is this available here??? is it expensive to buy the unit?? thanks for your help


I hope it all goes well, and that you receive tons of support. Mary F x


I'll just write a short comment now but am happy to tell my story for the ACSMA to use if they find it helpful.

I was diagnosed with SLE and APS 20 years ago following a huge DVT and several PEs. For many years I felt unwell and my INR was very variable at the 2-3-weekly checks. I felt it was changing even between tests but couldn't prove it.

The 11 years ago I was hospitalised for several weeks with life-threatening complications from a massive internal bleed and subsequent clots and further bleeds, and again a year later! I asked for a 2nd opinion from our wonderful experts in St Thomas' who agreed I should self-test.

It took me a long time to recover from the complications but have been self-testing since then and have felt much better and in control. My INRs have been much more stable and I've picked up problems (eg changes in INR associated with a cold or tummy upset) very quickly and adjusted my dose - keeping it in range.

I lead a busy life and work full-time so it is a real bonus not to waste time in depressing waiting rooms for blood-tests (except the occasional check) and am free and independent on holidays.

I would recommend self-testing to anyone who needs better control and independence.

Kerry Andrews


Dear Kerry

Thank you for posting this story. If you would like to email with the story you would like us to use on the ACSMA website that would be really helpful. Also can you let us know if you wish your name to be used or remain anonymous, or if we could possibly use your story for the media in the future. Whatever you feel comfortable with.

Many thanks




I would love to self test but I have different results with the vein draw and the finger stick. I have sle and aps.


I don't really qualify yet as I am at the hybrid stage of partially self monitoring and also still attending the local warfarin "clinic"-it is a single nurse with very short waiting times so I avoid the tedious waits of the local hospital warfarin clinic(the only downside being that I have to pay for my warfarin via a prescription whereas at the hospital clinic it is free).I self test around every 6 days and depending on my fluctuating clinic readings I attend the clinic every 2 or 6 weeks.One slightly worrying aspect is that I use a Coagucheck machine and did a simultaneous vein draw recently and the difference was 0.7 which of course means that I am apparently within my range(3-4) but in reality I may be outside my range.


I have been self testing for several years now on the advice of Prof Hughes. At first my GP was happy for me to do this and was happy to put the strips on prescription.

The doctor in charge of the local anti coagulation clinic was not so accepting and stated that he had only agreed to self testing where the person had agoraphobia and could not come to the clinic. He did however admit that I was the only patient he had with APS and reluctantly agreed as long as I went to the clinic once a year to check my machine against theirs, which I do and the difference is never more than 0.1

A couple of years ago my local PCT changed their policy and instructed my GP not to let me have my strips. I was instructed to start going to the clinic again. I refused and I still self test, paying for the strips direct from Roche at £60+ for 28 and then ring the anti coagulation clinic to report my reading and they then change my dose of warfarin if necessary.

Now that the GPs have taken over local budgets, etc. I intend to ask if I can have my strips on prescription at my next appointment.


Hello ACE, I will e.mail you my story. I'm happy to give my full name and be a media volunteer.

Your organisation does tremendous work on behalf of patients and by raising awareness of all aspects of anticoagulation, so I am very happy to support you and ACSMA.

By the way - although I am positive for lupus anticoagulant, my Coaguchek XS results compared to venous samples are only ever 0.1 or 0.2 different, so I continue to use my Coaguchek machine happily. Yvonne W


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