Are you on aspirin or warfarin and live in the UK?

I am desperately looking for anyone who

1. Is taking aspirin and has struggled to be put on an anticoagulant or hasn't been offered an anticoagulant

2. Suffered a stroke when they were on aspirin

3. Are on aspirin or warfarin and have never been offered a new anticoagulant or refused access to one

Please email me ASAP: raj@afa.org.uk

Many thanks

Raj Bilkhu

AF Association

19 Replies

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  • Judging by the queues at the Hospital Warfarin Testing Clinic - I am sure there are thousands of us on Warfarin and not been offered the new anticoagulants. Put me on the list please but I must say in between tests it doesn't cause me any bother.

  • I am on Warfarin and have no problems with it. However, I initially inquired about Dabigatran and my GP dissuaded me. When I asked for a reason, she said that it was because there is no antidote to it.

  • Hi I've been on warfarin for almost two years and have no problem with it. I've never been offered an alternative. I recently had an ablation. Thanks

  • Hi. I have been on warfarin for 9 months now, had one unsucessful cardioversion last July and currently listed for a catheter ablation next March. Not been offered or discussed alternatives to warfarin, but weekly INR testing does become very restricting.

  • I am on warfarin and self test. No problems.Had to battle with doctor to be put on warfarin though despite having had 3 T.I.A.s.Never been offered any of New anticoagulant.

  • You had to battle for Warfarin after 3 TIA's, amazing. Every time I hear this I do wonder whether cost is the big issue?

  • Hi Kroll

    Warfarin is a cheap drug, certainly the prescription charge is much more than the cost to the NHS, around £1 a MONTH I have seen quoted which puts it on a par with aspirin.

    However of course the cost of testing would be higher, but that should encourage self testing (not that it does)

    So whilst I know the new anti-coags are expensive, warfarin is a very cheap drug now

    Ian

  • I've been on Warfarin a couple of years and not been offered an alternative. I asked my cardio the other day if I should change, and he said no because I may need another procedure so best to stay on Warfarin.

  • Hi Koll it is unbelievable isn't it? The doctor said he was undecided as it wasP.A.F. and so it wasn't happening all the time! This was after a consultant at the stroke clinic had recommended that I went on it!! Every time I retell the tale I'm incredulous.

  • Dedeottie, Can you demand a second opinion?

  • I was on Aspirin for a couple of years after first being diagnosed with an " irregular heartbeat ", then about a year ago, after bad attack and meeting different cardiologist, with AF/SVT. After further appointments he recommended Warfarin, stopping Aspirin when INR reached correct level, which I have taken with no problems for last ten months. Other anticoagulants have never been mentioned, in fact I only know about them from reading about them on this site.

  • Hi, just keeping in touch.

    It saddens me to see that in this enlightened age there is still no standard form of treatment for AF re: coagulation regimes.

    Keep the good work up by using this form of communication. Not only is it super helpful in comforting people who are in distress but, the more knowledge we gain can be helpful in getting the message over to the professionals.

    Phyl.

  • Hi, I have had PAF for 10 years and am on 75mg aspirin daily and "pill in pocket" Flecainide and Bisopropol in case of an episode. My GP says that it is up to me if I want to go onto Warfarin. My EP says that the bleeding risk is actually greater with aspirin than properly controlled Warfarin. Both GP and EP say that the new anti-coagulants have no antidote and as I am into risky sports they would not be suitable. I cannot make my mind up whether to take the plunge and start on Warfarin.

    Lofty

  • The advice I have heard would tell me that you ought to be on Warfarin or one of the other anti-coags. Hopefully, someone with a lot more knowledge than me will come along shortly and say what they think.

  • Thanks Koll.I am actually on warfarin now after quite a fight. I changed doctors in the end and he couldn't quite believe my tale either.when you are feeling vulnerable it's the last thing you need but luckily my self preservation took over !

  • Oh that's good dedeottie, success! As you say, it's a shame you have to be pushy when you've got ticker issues, the last thing you want is any conflict however small.

  • There are guidelines for treating all sorts of AF, also anticoagulation. There are European guidelines and national guidelines and USA has it too. The last updating, I think, was published 2011. We all belong to different risk groups. Being a woman over 65 years with AF is the most simple reason for warfarin. That is 2 risk points. Then there are high BP, diabetes, smoking aso. Aspirin is still recomended for the low risk patients, like the one here with 0 risk points or someone with just 1 point. The new anticoagulants ? There is no antidote, less experience, price. So if warfarin is working well, as it often is, and you get tested once every 1-2 months and there is K vitamin as antidote...

    Pill in the pocket thing? Flecainide or some other drugs also? Propaphenone? Does it function well? what is the experience here??

  • Unfortunately I have to take both daily aspirin 75mg and warfarin......all a bit scary if you think about it.

  • Hello,

    I am only on aspirin now.Have /had AF first op needed to take warfarin it was stopped a few weeks after op.second ablation not put on warfarin but heparin administered during op.before first ablation i had a TIA lost hearing in one ear.kust had 7 day monitor on due to see EP at end of month.I have asked for anyicogulant but seems i will only get if im back in AF

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