Another request - please get in touch if you can relate to this and live in the UK:
- We are looking for someone with AF who is willing to tell their story to the media and be photographed. Ideally they would be on warfarin or aspirin and have been refused a novel oral anticoagulant (dabigatran, rivaroxaban or apixaban) yet should be eligible.
- We are also looking for someone who has previously been on aspirin or warfarin but were switched and successfully treated with Xarelto (rivaroxaban).
Please email me your contact telephone number if you live in the UK, are happy to share your story with the media and fit either or both of the above criteria.
Many thanks and have a great weekend everyone!
Raj
AF Association
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AFAssociation1
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I now take Xarelto having failed to reach therapeutic levels on Warferin. I have also succeeded in having this prescribed on the National Health, but it took a long time. I had a crioablation 8 weeks ago to treat paroxysmal AF. Happy to help
Diagnosed with AF last year. Commenced on warfarin,which I took til May.this year but couldn't get into the therapeutic range. Saw cardio registrar who suggested I take rivaroxaban, no problems with my G P prescribing it as it had been advised by consultant. Was a bit worried about taking it , what if I had an accident but was told it was so short acting and they could use packed cells for a bleed. Have had no problems at all since I started it. The AF seems to be becoming more frequent, ther was no suggestion of an ablation. I am female and 65 .
Well Jennydog I live in north wales and am on Rivaroxaban ....started on warfarin but had to change as side effects were bad. Guess it depends where in Wales??....
After first episode of AF, rivaroxaban (or other new anticoagulant) was suggested by the hospital in Southampton. GP has prescribed it without any problems. has not been on it for 6 weeks. Kind regards. Eva
Ditto as Jennydog, I'm borderline acceptable for anticoagulation because I have a score of 1 on Cha2ds2 vasc , just for being female, but my doctor put me on aspirin - I asked about the new anti-coagulants as warfarin sounds complicated, but he said the NHS Trust won't accept anything except warfarin and all their patients are on warfarin. From what I hear this is true across Wales.
Re Wales, it looks as though warfarin is the automatic first choice and if it doesn't suit then they have to try an alternative otherwise they might finish up in court were you to have a stroke. My cardiologist was very specific last month - he said they did not fund alternatives to warfarin.
I too am borderline as a female, the cardiologist refused to put me on warfarin, but I'm seeing an EP shortly so I'll be bringing the subject up again.
I've been on Rivaroxaban for nearly 3 months now ; warfarin upset my tum causing IBS flare up even though INR readings were 2 . Not sure how to contact you re giving my story.
hi i would be intrested . they have taken me off warfarin .three months after ablation. cause they say im not at risk anymore . but i dont trust them . they dont seem to know anything about condition . so how do i sighn up????
Thank you very much for responding. I have sent a message to all those who fit the criteria, although I can't guarantee your story will be picked. However, I am keeping a record of everyone who responds to highlight challenges or disparities in access to treatments.
I used to take phenindione due to warfarin allergy. There seems to be repetitive problems with production and supply of thus medication. It also costs more than 10 times the cost of rivaroxaban. I switched to rivaroxaban when NICE gave approval but was easily justifiable on cost grounds alone. I'm generally quite an allergic type of person generally and I haven't had any adverse reaction to the medication. I discussed my GP concern with no reversal of the medication effect with my cardiologist who also confirmed the short half life and in cases were there needed to be emergency reversal there was the option of blood transfusion should it be necessary. I'm not sure that there is too much of a difference in time in getting to a hospital for vitamin K treatment or in the same emergency scenario limited blood transfusion.
As rivaroxaban is red line listed drug it's generally prohibited by our PCT. When phenindione was not available I was in a stress predicament because the GP could not prescribe rivaxoban and there no possibility of wafarrin due to the extensive allergic reaction some 14 years ago. I had a stressful protracted week with the PCT in relation to switching but as it was cheaper and no clinical alternative, as well as the risk of having no protection to cover me for a stroke from PAF, I was able in the end to get it prescribed on the NHS with help from my cardiologist.
Whilst on phenindione I used to monitor my own INR at home weekly at great personal cost because getting to the hospital each or every other week was never a practical solution.
I think the new generation of anti-coagulation will replace warfarin as the price reduces and the cost of monitoring becomes more than the cost of drugs like rivaroxaban. The research data I looked also illustrated a slightly higher protection from stroke than warfarin.
I have had AF since 2009. Aged 59 years. I was on Aspirin for about two years as I was deemed low risk. My cardiologist was happy that I could move onto Warfarin if I wished. However, in 2010, I was prescribed Warfarin, but could not be stabilised regularly to the INR range of 2.5-3.0, and constantly struggled to reach 2.0
I asked my GP in late 2012 if I could possibly move onto one of the novel anticoagulants, but it was pointed out that my risk levels were not deemed sufficient to be on one of them, and was told that the only time that I could be considered for one of the new drugs was if my therapeutic INR range was outside the recommended levels for 60% of the time. Until recently, I could not find the diary that I kept whilst on Warfarin from back in 2009, but recently found it and observed that I was outside the recommended range, so I then saw another doctor in my practice, one who has just joined the practice, and who after a meeting with the other doctors, was able to prescribe Dibigatran, which I have been taking for about 3 weeks now.
have been on rivaroxaban since Oct 2012. Was on dabigatran for 6 weeks - severe side effects with acid reflux could not eat or swallow properly and very itchy. Was then switched to rivaroxaban felt o.k BUT had bleeding from ear after 3 weeks and then had a nose bleed after6 weeks - never had a nose bleed before and I am 67.I now have what appear to be blood clot under my thumb nails my thumbs are swollen and burning. Have been referred to ENT specialist trouble is when you go to G.P they do not know anything about this fairly new drug as it is only prescribed by the cardiologist. Was on aspirin for 18 years without any problems .going to ask my G.P to refer me back to hospital as my next check up is not till August.
I started dabigitran a week ago on the recommendation of my cardiologist. I was diagnosed with a fib seven years ago and have taken aspirin. I am not aware of having a fib. The second capsule started heartburn. By the sixth capsule(i.e. 3 days) I had heartburn, difficulty swallowing, stomach cramps and general upper body discomfort which lasted more than three hours. I stopped taking it. Four days later my stomach is still not back to normal. My inclination is to go back to aspirin.
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