Are you struggling to be prescribed an anticoagulant to help manage your AF-related stroke risk?

Ahead of the upcoming NICE Guidelines on atrial fibrillation, the first to be released in eight years, AF Association is eager to speak with AF patients who believe they are not appropriately anticoagulated. The new guidelines on AF care and treatment will seek to make sure all patients receive appropriate medication and are scored for their personal risk of AF-related stroke.

If you have challenged your GP or cardiologist and asked to switch from aspirin to warfarin, we would be very interested to learn more about your experiences. Please email andrew@afa.org.uk or comment below to learn more about sharing your account for a potential media opportunity. Thank you.

22 Replies

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  • Dare I say that I think the first thing is to know whether you ought to be on anti-coags or not. I for one simply do not understand the CHADS or CHA2DS2-VASc scoring system. I have a score of zero but have been on warfarin for years because of arrhythmia. I could wait till I have a TIA / stroke / whatever, then I'll get a score but obviously would like to avoid that.

    Seems to me that the system tells you that you are OK without AG's when in fact you may well not be.

    Or am I doing something wrong?

    Koll

  • I feel that this is a loaded question and that a presumption is being made that everyone, or nearly everyone, with AF should be on anticoagulation. Stroke risk is only one factor in deciding correct treatment and medication for AF. A one size fits all policy is not in the best interests of patients and the assessment of personal risk is too narrowly defined.

  • You are quite correct in your thinking Koll and, I'm sorry Mrspat but you are quite wrong when you say that personal risk is too narrowly defined. It's not narrowly defined enough thanks to Chads which has no value beyond an academic stroke risk assessment matrix for medical practitioners. The sooner patients forget about Chads, understand that simply having AF presents them with a 5x to 9x greater chance of stroke than someone in the general population and demand, yes demand, proper anticoagulation, the sooner the scandalously high stroke rate in this country will begin to fall. Why should a patient have to wait for a first stroke just to bump their Chads score up? Would we say "Let's not bother with MMR jabs for kids? Let's wait until they get measles etc and then we'll try and cure them". "Colonoscopy?" "Why on earth do you want one of those now? If you get colon cancer, we'll deal with it."

    It's utter nonsense and entirely flies in the face of preventative medicine, the corner stone of health practice in the modern world. If you have AF - Anticoagulate Now! This should be the strong message from the AFA.

  • I couldn't agree more. There will be some folk out there who are prone to bleeding of course and, for these, anticoagulation might be more problematic. But to generalise, as Chads does, and say that if you're under 65 with no other heart disease, diabetes or past stroke, you are safe without anticoagulation is simply not telling the truth!

    Perhaps we should turn Chads on its head. Let's make anticoagulation the default position and then consider any factors likely to affect bleeding risks.

  • My point about personal risk is that all medications and treatments come with some risk. There are some instances where the risk from those outweighs the benefits - for some individuals.

    The point of the AFA question, to my mind, is about gathering information to beat doctors with a stick. If they want to do that, they should concentrate on those who fail to implement the already agreed guidelines on prescribing the NOACs. Though I suspect that there are those both in the medical profession and out of it who would have us all warfarinised, despite personal risk and choice.

    I personally have a CHADS and CHADS2 score of zero. However, my cardiologist says this doesn't even apply to me because it doesn't take the structural abnormality of my heart into account. I have agreed to take a NOAC. However, I would reconsider this if it affected my organs or became incompatible with other medications that I need to take. I won't follow a blind mantra that may not take my individual medical history into account.

  • Of course leelec is right that there will be those for whom anticoagulation is not appropriate and if you or your doctor determine that you are one of those, then that requires serious consideration. But paradoxically, the Chads matrix selects the 'youngest and fittest' of AF sufferers to be excluded from anticoagulation. And these are the very people who are least likely to have bleeding risk issues even though they are around 5x more likely to suffer stroke than the average member of the population. So, if the majority of AF sufferers would greatly improve their life expectancy with anticoagulation, it should indeed be the default treatment for all those diagnosed.

    Warfarin has been taken safely by millions for decades. I would suggest that warfarin induced organ failure and incompatibility with other medicines are very much exceptions to the norm. We can't say the same about the NOACs yet of course so you are right to be a little wary.

  • Hi all, thank you for your comments and we apologise as this was never intended to be a loaded question. AF-A has provided tools, including the AF stroke risk calculator, which patients can complete and then share results with their doctor. You can read about the upcoming NICE guidelines in our most recent newsletter - stay tuned for updates, including news on a new resource we have been working on to help guide patients and support them from first diagnosis through to management and living with AF. Thank you.

  • Please explain how the AF stroke risk calculator is "a useful tool" when it is responsible for huge numbers of patients, at significant risk of stroke, unprotected by a tablet costing pennies? Promoting it is shameful.

  • Can you please tell me where this risk calculator is so I can fill it in. Thankyou

  • Hi Dottlind

    You can find the risk calculator on the CARE AF website: careaf.org.

    Kind regards

    Vicki

  • I am not sure who is behind the AntiCoagulateNow screen name but I think it's significant that the Avatar is showing an "on Warfarin" tag.

    Glad to have this resource for exchange of information and support but not interested in pressure groups.

  • Hey MrsPat, I represent no pressure group. It's just me and I happily and safely take warfarin as it is, quite simply, my lifesaver. I do get a little frustrated however when folk appear blind to the blindingly obvious. But it's their lives they're risking so at the end of the day, it's up to them. No pressure there then...

  • +1

  • It's interesting that no one has come up with a cogent argument for putting one's life in the hands of the Chads system. Oh and I'm not the MD of Warfarin plc either!

  • As for things being blindingly obvious ...... A) always read between the lines and b) use your own mind. As I've already pointed out, the CHADS system is irrelevant to me.

  • Let's not fall out Mrspat. You sound like a sagacious lady with your own informed views. You stick to those.

    It's the AFibbers who think the doctor always knows best and leave the consultant's clinic unprotected that I respectfully seek to caution. There's far too many of those....

  • Well, we can at least agree that doctors don't always know best, especially when they don't agree amongst themselves.

  • I am just about to visit the warfarin clinic for the first time. Last week the doctor suggested I do a blood test to take with me, but when the clinic called me they said why did you do a blood test! So far my opinion of they way things have been handled is pretty low!

    The clinic said come down and instead of 3 minutes I will get 15 to explain what and how they intend to start the treatment! I said I would like a thorough discussion and she said 15 minutes would be fine.. I asked if my blood PH would have any bearing and she adamantly said no, does anyone think the PH should /would have some bearing?

    I am one of those that was almost crippled by Statins 10 years ago, and still retain some issues.after stopping them in 2007, some I am very dubious about the current drug treatments available. probiotics seem to be worth discussion?

    _-----------------------------------------------------------

    Comment from Spain:

    Slowing down and irregular rhythm", sounds like a lazyness issue, not getting enough exercise, eating too many bacon sandwiches and not drinking enough water; I know cos I am that soldier :-) ... my prescription would be walk for an hour twice a day , drink 3 litres of water and limit yerself to 2 big glasses of wine a day, take vit C, magnesium and calcium supplements and I bet you'll be fine next time they test you ....

    ---------------------------------------------------------------------------------------------------------------

    Read below ref :Wafarin... Anything that does this to your finely balanced holistic organism is NOT doing you any good ... trust me on this .....it might treat a symptom but will not cure anything , you are more likely to suffer a cerebral hemorrhage which has the same effect as a stroke , i.e it messes yúp good.

    Warfarin side effects

    Severe bleeding

    Black stool or bleeding from the rectum

    Skin conditions such as hives, a rash or itching

    Swelling of the face, throat, mouth, legs, feet or hands

    Bruising that comes about without an injury you remember

    Chest pain or pressure

    Nausea or vomiting

    Fever or flu-like symptoms

    Joint or muscle aches

    Diarrhea

    Difficulty moving

    Numbness or tingling in any part of your body

    Painful erection lasting four hours or longer

    Although rare, warfarin can also cause skin tissue death (necrosis) and gangrene requiring amputation. This complication most often happens three to eight days after you start taking warfarin. If you notice any sores, changes in skin color or temperature, or severe pain on your skin, notify your doctor immediately.

    Less serious warfarin side effects to tell your doctor about

    Gas

    Feeling cold

    Fatigue

    Pale skin

    Changes in the way foods taste

    Hair loss

    From a friend who is against Warfarin..: I get bouts of A Fib about 5 or 6 times year , usually stress related in my case or when I am too heavy , drinking too much coffee or too much booze. I take some drops of a non prescription Russian medicine called “valocordin” and it goes away after about half an hour although sometimes my heart feels tried for a few days after. I think it must be good cos the sceptics have banned it in the US.

  • AnticoagulateNow

    You are obviously aware of the numbers of patients not on anti-coagulants who should be, so it seems surprising that you criticise the AFAs tool, which is very useful for patients to use and then have the individual discussion with their clinician about what is right for their personal case. The cost has nothing to do with their argument- they acting to try and prevent strokes

  • Thanks Rosy but my point is that the 'tool' currently implies that patients who score 0 or 1 are not at risk without anticoagulation. This is just not true! They are at least five times more likely to have a stroke than a member of the general population with a similar profile but without AF. That is pretty scary but can be so easily countered with proper anticoagulation.

  • My EP has routinely put me on anticoag as standard with a chad score of zero and a structurally normal heart in the run up to my ablation slot but not warfarin one of the newer ones he said better to be safer here than sorry..:)

  • Had a recent battle with my GP who was challenging my EPs instruction to give me Apixaban...I got it in the end after a fight..

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