Sticky Blood-Hughes Syndrome Support
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Self testing

Morning All,

If I may raise the thorny issue of self testing and prescriptions again....

My GP who is very understanding has agreed to and is in talks with my CCG asking about prescriptions for the dreaded strips!

I've offered to self fund the machine, but could not afford to keep buying strips into the future.

My issue is that I currently have to attend my local GP surgery every week for an INR and I'm concerned my arms are becoming a mess and scar tissue is forming.

I've looked on information issued here about local CCG policy and my particular one in South Glos is unclear as it seems to stats it's decided on a case by case basis.

My rheumatologist is supportive which is great. Being tied to weekly appointments is a pain tbh however it's better than the mess i ended up in a few years ago through bad practice and management of INR despite my protests at my last surgery before I moved home,

Back then my INR range was set too low (I now realise) and I was only being tested on average every 6 weeks in the local surgery by their own machine and the results were kept in house despite my asking to be referred to a consultant.

Hindsight truly is a wonderful thing.

Best Wishes


10 Replies

It does sound as if your push forward will yield results for you, I hope it does, keep us posted. MaryF


Thank you I will


Well done Danny

When i was on Warfarin I self tested and self managed, with my GP's backing.

We have our next APS West patients' group meeting at 14:30 on 8th April in the Parry day Room at the Royal National Hospital for Rheumatic Disease in the centre of Bath.

Please do send me a message with your details and I will let Daniella, who organises our meetings, know that she should contact you.

Best wishes and regards.



I have been self-testing for years, for many every other day at least on advice of Prof Hughes. I am sure my GP surgery would readily accept that all other things aside, it has been economical, and reassuring, for them. For the second time in as many months I have had to be really on the ball monitoring my changing INR, because of other temporary drugs that have interfered, and for bridging purposes whilst going on and off fragmin. I am about to start yet again prior to a procedure under general anaesthetic. If all this were being managed by the hospital or my GP it would be very costly, last time it meant a week in hospital. In addition, my use of self-test gives me peace of mind and a life!

Keep at them Danny, explain the benefits. I can go from being at a safe INR to needing fragmin within 24 hours. The right INR and the means to maintain it can be essential for us.

Best of luck


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Thanks Tim much appreciated fingers crossed. I've been on the stuff (warfarin) for 20 years now so the cost must be mounting!


I've been ticked off for concerning myself about cost, though it does concern me and I do my best to keep it minimal by avoiding waste. Its been costing them for about 40 years in my case.

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I agree with Tim. We are both also Lupus Anticoagulant.

Selftesting gives a peace of mind and easier living.

Kerstin in Stockholm


Sounds like you are on your way to self test. Great. But a note on the INR tests: my hematologist and I decided to stick only my right arm, thus saving my left arm for old age. I'm 14 years into bimonthly blood draws and so far my right arm is holding up.


Hi Danny

There is a really good website (link below) which are campaining for free self testing in the UK. They are the Anticoagulation Self Monitoring Alliance. Perhaps they may be able to help you. I have to buy the strips here in Spain and the cost is a real worry at times. If you click on the 'Fact Sheet' it tells you your rights, and makes quite interesting reading, as does the site as a whole.

Good luck.

Best wishes from here InSpain

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Thank you for the info and link much appreciated

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