CAMPAIGN FOR EQUAL
ACCESS TO ORAL ANTICOAGULANTS In issue 47 of InReview we asked you to share your experiences of asking to take one of the newer oral anticoagulants. Here we share just two of your many responses.
DAVID I need to go back to 1991 when at the age of 49 I had my first VTE event with painful thrombophlebitis in my ankles. I went to my GP who told me to take anti-inflammatory tablets (Ibuprofen tablets and cream) which had little or no effect. This condition repeated itself nearly every year thereafter, always during the early winter and usually lasted for 6 to 8 weeks. On several occasions I returned to my GP who assured me that I had ‘Nothing to worry about, its a superficial inflammation of the veins caused by sticky blood’. He seemed disinterested in finding the cause. In November 2005 I suffered a sudden PE (collapsed breathless after running up stairs but recovered after an hour or so). I went back to the GP who sent me for a blood test and X-ray. It took him 2 weeks to let me know the result and then I was immediately sent to hospital (A&E) as an emergency. I was admitted for tests including a CT scan that revealed I had multiple blood clots in my lungs. My hospitalisation was an experience I hope never to be repeated (but that is another story). After a week I virtually discharged myself after being given anticoagulation treatment which transpired to be a ‘life sentence’ on warfarin.
In 2007 I was diagnosed with bowel cancer (followed by 2 operations) and I cannot but wonder if this was the underlying cause of the VTE. I have found my 9 years experience on Warfarin to be moderately onerous. Obviously I have to be careful in what I eat and drink but I have had unstable episodes particularly with interactions with other medicines (antibiotics for example) or when it has been necessary to switch to dalteparin injections (for surgical/dental operations). Looking at my ‘yellow books’ I can see that on average I have to change/modify my Warfarin dosage 2 or 3 times a year and it takes up to 5 or 6 weeks to regain INR stability with the inconvenience of weekly blood tests. On average I have 20 blood test per year with occasional resultant hematoma events! During 2013 I read with much interest the InReview articles on the ‘new’ anticoagulation drugs with the NICE recommendations. I presented copies of the articles to my Anticoagulation Clinic with a request that they review my anticoagulation drug therapy. I received no response. I then presented the same papers to my GP (the same GP as previous) with a request that he consider a change from Warfarin to Rivaroxaban. He was adamant that it was not advisable for me, saying that it was ‘dangerous’ because there was no ‘antidote’ available
to reverse the anticoagulation effect of Rivaroxaban in the event of an accident or other bleeding emergency. This left me feeling very apprehensive about insisting on my (NICE) rights and it would be very foolish to ignore the warning given by a doctor so I decided to continue with Warfarin. On reading InReview issue 47 – my understanding is that an ‘antidote’ is or will be available for several of the NOACS. However, the article gives no indication as to when or if the ‘antidotes’ will be available in the UK? I feel sure that I will be one of many who will not hesitate to make the change to one of the NOACS if antidotes are available and it will be interesting to see if our health professionals share the same attitude.
VALERIE I was diagnosed with Atrial Fibrillation with a CHA2DS2-VASc score of 3 in December 2013 making me a high risk for a stroke. The heart consultant at the hospital suggested I go on warfarin and I asked if there was any alternative as I explained that I feel ill and faint every time I have a blood test. He said that there were some new drugs available but there was no antidote for them if I should have a bleed. Whereas there was one for warfarin and it was tried and tested. I said I would like to think about it. The consultant said he could not prescribe any medication and I would have to see a consultant for the blood who could prescribe medication.
guidance and information regarding warfarin and the three new oral anticoagulation drugs. Consequently I had a lot of questions to ask the consultant when I saw him at the appointment. I explained my objection to taking warfarin and it was clear that he would not entertain prescribing me the newer oral anticoagulants as he said “that he would not prescribe them to a dog”. It was obvious to me then that if I carried on under his care it was warfarin or nothing. I wrote to my GP saying I was not happy with the situation and asking that I have a second opinion with another consultant at a different hospital. The GP was in agreement and wrote a letter so I could see another heart consultant at another hospital. This I did and once again I explained why it would be difficult for me to take warfarin and that I knew there were new anticoagulation drugs available. He said that I seemed a candidate for these and would arrange an appointment with the consultant dealing with this side of treatment. I had this appointment in August last year and the tone of the meeting was completely different. There was much more discussion about treatments and I was very much involved in deciding the best way forward for me. The outcome was that I was put on Rivaroxaban and I am still on this medication. So my experience was that I had to fight for the new oral anticoagulation drugs with a lot of time wasted from the diagnosis of Atrial Fibrillation to receiving the new drugs.
An appointment was made and I saw this consultant in March 2014. During the intervening period I contacted the Heart Foundation specialist nurse who pointed me to AntiCoagulation Europe and the Atrial Fibrillation Association and both were a great help in giving me
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