Sticky Blood-Hughes Syndrome Support
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Tell your story and help others to understand what being on warfarin is really like

If you are one of the 1.2 million people across the UK taking warfarin on a long-term basis? How easy are you finding it to keep tabs on your dosage and your INR levels? Are you facing challenges - for example, in terms of frequency of hospital visits, getting guidance and advice, cost of prescriptions, access to self-monitoring, etc? Young people may find this particularly difficult, with all the other issues that they have to deal with: such as preparing for exams, developing relationships or peer pressure. How does being on warfarin affect you?

People who have recently started taking warfarin have many questions and face uncertainty. Could you help?

Help people by sharing your experiences - good and bad - of being on warfarin - your story could influence others.

Whether you have been taking warfarin for a long time, or have only just started, we would love to hear about your experiences, the challenges that you have faced and how you have dealt with them, so that we can help you to help others in your situation.

If you would be interested in sharing your story with us, we would be delighted to hear from you, on

We can use your story anonymously if you would prefer just tell us when you email us.

12 Replies

Hi there, I am sure there will be people interested in contributing to this, especially as in some areas people are struggling to have their INR set at the correct level for Hughes Syndrome due to lack of understanding about the disease. I am not on anything stronger than Aspirin currently, otherwise I would contribute. Best wishes. Mary F x


Hi there, perhaps you could explain a bit more about your organisation. You don't say exactly who you are or what Charity or organisation you represent. People may well feel apprehensive about sending you information without this.

Of course here on the Hughes Syndrome Foundation site they are free to share information about all the issues you mention and that are directly associated with their APS too.

Look forward to hearing from you.


Hey, I've sent you a email about myself on warfarin whilst trying to be a normal university student. :D x


I guessed by the address that you were asking on behalf of Anticoagulation Europe? please let us know your role with regard to this organization. MaryF


Hi Mary F

Sorry in my enthusiasm to get the post out there I omitted the essential details.

My name is Eve Knight and I am the Chief Executive of AntiCoagulation Europe, a charity based in the UK whose mains aims are the prevention of thrombosis and the support of people on anticoagulation therapy.

We are currently working on two major projects

1) Experience led commissioning which means that commissioners take into account patient experience when they are designing or re-designing services. That is the main reason why we need your stories to show commissioners what it is really like to be on anticoagulation therapy long term and to influence the provision of services so that they are designed around patient needs and outcomes.

2) We are members of the AntiCoagulation Self-monitoring Alliance (ACSMA) that is campaigning to get the self-testing monitors on prescription and also to get equal access to the testing strips. The strips have been available on prescription since 2002 but still not all GPs will prescribe them. The National Institute for Health and Care Excellence (NICE) is currently evaluating the monitors and will report sometime next year.

Thank you for any help that you can give us.


Dear Eve, Thank you so much for clarifying that. I felt you were from Anticoag EU but wanted to check because you can never be too sure!!

You may be interested to know that I am part of a steering group which is building a brand new Anticoagulation and Phlebotomy Department at my local hospital from scratch. Its exciting because we have been given more floor space which we can design as we want and so have a blank canvas. We are now at the wish list stage and meeting next week to put together that with the drawings.

Whats interesting is that they have done away completely with finger pricks to test INR by venus testing everyone due to accuracy. Id be interested to hear your views on that?


can you email me at as I want to send you something that may be helpful for your hospital but is not for this forum.




Thanks for your clear and useful reply. Mary F


Eve, ok to respond if I'm from the US?



Dear Holley

Yes would love to hear your experience.




Can anyone please give their views and experiences on the accuracy of finger prick testing, as I understood it to be very accurate, and I don't think had any problems, also how you manage on self managing your INR and dosages with warfarin - I am hoping to go to self testing and management very soon as sadly my new GP is less than helpful .... but that is for another post.

Thanks one and all



I was diagnosed with Antiphospholipid Antibody 22 years ago following a DVT in my left leg. Due to trauma (caused by medical negligence) I suffered I'll health and saw numerous specialists. I was on and of heparin and warfarin for each of my operations. After my last operation the warfarin stopped. After the birth of my daughter almost 15 years ago my health deteriorated rapidly when I was told to stop taking warfarin. The migraines were so severe I often thought I was going to die.

In May this year I suffered a TIA but none of the Doctors recognised it, they said it was a migraine. I knew it was not a migraine and desperately tried to tell them. I asked about taking Aspirin or Warfarin but was told I didn't need it. I was very frightened and started to do my own research. When I read an article on 'Sticky Blood' I knew I had this. I have since seen Professor Hughes and Professor Khamashta at London Bridge hospital. I was diagnosed with Hughes Syndrome and advised to start warfarin as quickly as possible to prevent me having a stroke.

Both Professors advised me to buy a Coaguchek machine and self test. I did this but my warfarin nurse was not supportive at all. She kept asking me 'why do you have to self test?' 'How do I know if your machine is quality checked or calibrated?' I felt so intimidated by her I asked her to get in touch with London Bridge Hospital and they will answer these questions as I am new to this and don't know. I was extremely upset at the lack of support and understanding. I even showed her the letters from Both Professors advising me to self test. I spoke to my GP and asked her if I could self test/monitor and report to her but she didn't want the responsibility. She told me that I had been excluded from the warfarin clinic and had no back up support! My husband couldn't understand this so my GP agreed to speak to the warfarin nurse and get me back into the clinic if I followed her advice.

Today I received a letter from my GP refusing to prescribe warfarin for me that I should get my prescriptions from. London Bridge Hospital! I'm so upset by this.

I am desperately trying to get hold of Dr Baines (vascular medicine). I saw him a couple of weeks ago and he supported my self testing. I showed him my readings etc and he praised me for taking control and acting responsibly. He understands Hughes Syndrome and the importance of self testing.

I am coping really well self testing and dosing. I feel so much safer doing it myself than attending a clinic every month and not knowing what my INR is when I feel unwell.

My daughter has Type 1 Diabetes (since 9years old). This condition is so much more difficult to control and needs constant monitoring. I have a much easier job controlling my INR than my daughter has with her Diabetes!

Sorry about the long winded reply but I'm still upset at my GPs letter and lack of support.


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