Tell your story to a wider audience and help others to understand what being on warfarin is like.

[warfarin1]

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 [e-mail]

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

[Gillywiggs]

I have been taking Warfarin for 13 years after a double mastectomy which caused me to develop Pulmonary Embolisms. I found it difficult to cope with tests at my local hospital at first but circumvent these by attending my GP surgery or having my midwife sister take my blood and dropping it into the hospital. My diet is rich in green vegetables and I drink wine nearly every day but I try to be consistent and maintain levels around 2. I am eligible for free prescriptions which is great but I find the testing a bind. I also dislike the fact that my Anti-coagulation clinic are very strict and have even sent community nurses to me to inject me with Heparin! I'd like to come off Warfarin for its testing limitations but need to see my doctor. It hasn't caused me any other problems so I am probably lucky.

[warfarin1 in reply to Gillywiggs]

Dear Gillywiggs

Thank you for sharing your story. The fact that you have not had too many problems will give other people a lot of hope. It is always fascinating how warfarin affects people in different ways.

[Renklidag1]

I have had a number of DVTs that has resulted in me being put on warfarin for ever. I never used to have any problems as I had a coaguchek machine and it all ran quite smoothly. I need to buy a new Coaguchek machine as the old one got a bit soggy and I'm now told I can't get the test strips on prescription. I usually don't go for more than 3 weeks without an INR test and I'm often tested more than once a week. I work full time and have just started a new job and let's just say that it doesn't go down very well having to take so much time off for blood tests, and may even mean I dont pass my probation period. It puts me in a very difficult situation as I can't always get to my appointments and my employer is getting pissed off. I don't know what to do for the best as I can't afford to pay full price for the test strips.

[Hidden in reply to Renklidag1]

Ask your doctor / consultant for Riveroxaban instead . No finger pricked testing neede when the correct dosage is made . Usual regular checks with a haematologist is required at the hospital . One a day pill saves so much hassle . Good luck.

[warfarin1]

Dear Renklidag1

We are seeing a lot of this happening in the change over from Primary Care Trusts to Clinical Commissioning Groups. Can you let me know which CCG it is and we will see what we can do from this end. Also was it your GP who told you they would not fund them?

Eve

AntiCoagulation Europe

[Renklidag1]

Hi, yes I was my GP that advised me of that when I rang them today. I'm under Medway CCG. Thank you for your help.

[jessie11]

I am in a similar predicament. I have been on warfarin for 14 years after 2 DVT's. I usually travel 15 miles to hospital for my blood tests as our local surgery is rubbish (can wait well over an hour after your appointment time), once every 2-3 weeks which is a real pain. I have recently gone back to working full time in a new job after my youngest child started school and just cannot find the time to be tested all the time!! I am looking into buying a self tester, although I have not discussed this with my consultant or GP. I am just so stressed by all this,and I am now a week overdue my appointment as my new job as one-to-one in a SEN school does not allow me to be driving around south wales during school time!!

[Hidden in reply to jessie11]

Jessie11. Don't despair. It is true that some CCGs are reversing a previous willingness to prescribe strips but Central NHS is trying to encourage patients to self-care, i.e. look after their own treatment more and NICE are examining the approval of GPs to prescribe not only the strips but also the INR testing machines from next year for long term Warfarin patients. The trend is to encourage self testing and the GPs and CCGs will eventually find it hard to resist the pressure to comply I hope.

[wild_cat]

i have got my second DVT and i am only 28yrs old. i am scared and feeling rather low about it all.

[Hidden]

I had warfarin some years ago first , for a DVT. It was a nuisance having tests every week ( privately ) to check the correct INR. I took it for six months . Then it was considered enough by the consultant . Two years ago I nearly died with multiple bi lateral PEs. I was in the first weeks given warfarin , dealt with by what appeared to be not very well trained anti co ag nurses / testers ? They could not get it right ! It turned out after many weeks of feeling dire , hair loss , stomach bloat , changing from a healthy diet to a not so healthy diet , I had an inherited blood disorder . So the testers of my INR which the NHS was about to only then do every 6 months was useless. I'm sure there are lots of people like me suffering awful warfarin clinics for this old fashioned drug that not only inhibits healthy diet , but has so many side effects . I watched many old people bent over from osteoporosis , balding ( women) which can all be linked to warfarin . Why not put the funding for the anto-coag testers salary etc into developing more stable less intrusive anticoagulant drugs like Riveroxaban for instance ? The warfarin clinics are miserable places and in my own experience badly informed staff help matters when in times of stress , little. This I understand is nothing directly to do with the actual drug but I think I could say that , if the people taking the warfarin didn't feel so bad as a result of taking it to thin the blood , maybe there'd be more smiling faces ( staff too) in those clinics . Just a thought !