Warning - controversial opinion ahead!

"We have reached a stage where, unless medically contra-indicated, newly diagnosed AF sufferers should be offered NOACs as first-choice anticoagulation in preference to Warfarin". Discuss.

Note that I am not talking about people who have been on Warfarin and are happy to stay on it nor those who have medical contra-indications.

Very sad to hear that some doctors are still taking into account cost factors hidden as medical reasons, using scare tactics or not mentioning NOACs. Time to do a survey of who is prescribing what, I think, as well as an up to date survey of patient opinions. Newly-diagnosed patients are vulnerable and often lack information.

31 Replies

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  • I totally agree with your last line Mrspat. It often takes a while for them to find us here and become enlightened. Best practice already allows for discussion about anticoagulation and in my opinion should include ALL options. Believe it or not some people do find INR testing to be comforting and are not keen on blind trust that NOACs work. CAREAF already makes this clear but implementing this strategy is not that easy despite NICE guidelines.

    Bob

  • Yes Bob. As you will remember from previous posts, as someone who struggled with a stable INR, I have always found it difficult to believe that people find comfort in the testing regime. It just increased my anxiety levels!

  • Hi Mrspat - My INR is always all over the place and I usually end up going for tests every 1-2 weeks. I get a lot of aches in my body which became worse after I increased my warfarin dose, so I decided to have a look at the side effects of warfarin. I discovered that the 1mg tablets contain a substance E123 that is banned in the US and a few other countries.

    I'd read a lot about the new NOAC's and had decided that it looked like Apixaban was the new pill for me. I thought I'd have a quick look at the side effects and was astonished to see a fast heart rate listed.

    I know some people never read side effects, but I'm not one of them. I usually read the whole leaflet so that I'm well informed. I will find the links to the sites that give the information I've written about and put them in another post.

    Jean

  • If I read it all Jean I get it all! lol

  • Yes, I know what you mean, but it's important to read the whole leaflet really before starting any medication.

  • Re 1mg warfarin tablets which contain E123:

    1e-number.com/e-number-guid...

  • Thank you Jean. Just proves that the "one size fits all" approach is wrong when it comes to medications.

  • On the day of my diagnosis in hospital, the cardiologist told me he was prescribing Apixaban as it had a lower bleed factor than Warfarin. No other information was given nor discussion entered into regarding why, what or how. To be honest, I was so shocked by what had happened to me that I doubt if I could have made any rational decision about anything. I assumed anti-coagulation was short term until 'I got better'. :(

    A follow up discussion with someone to talk things through and answer questions would have helped so much - but our NHS here is stretched to the limit and healthy looking patients with 'palpitations' don't give 'too much to be concerned about'. (Quoted verbatim)

    A human version of the AFA website/this forum is what I have in mind perhaps.😀

    Interestingly, cost has never been mentioned as I think it is centrally funded from Stormont but I saw a political comment recently which made me suspect that there may be a move to charge patients in NI for more expensive medicines. Administrative nightmare.

    I wonder how many patients are prescribed AC's based on their individual needs, rather than other factors such as cost, physician's preference etc.

  • When I was diagnosed last November the cardiologist said I'd need an anticoagulant such as Warfarin. He went on to say there were 'newer' one's available and that Apixaban seemed to be a successful alternative. However, it was up to me to decide which to go for! Good grief - how was I supposed to make a decision about it when I knew absolutely zero about any of it? I asked him to spell Apixaban for me and I would Google it which I did! Anyway, the upshot is that I'm on it and it seems fine. I absolutely hated taking it to begin with but, thanks to this site, I realise there's not really a choice to be made! It just astounded me that the cardiologist expected me to decide without any info on the pros and cons. Frightened of being sued, no doubt!

    Re cost of drugs: my GP prescibes 2.5mg Bisoprolol twice daily although she mentioned that she'd get a 3rd degree from the chemist due to the cost. Apparently, it's cheaper if you take the whole 5mg in one tablet....

  • Interesting one about the cost of drugs. I've been taking Digoxin for about a year. Until the last two prescriptions,the medication has come prepackaged in 28 day doses. The last two have come in small bottles. I'd guess that our village pharmacist now has enough patients on the same medication (which is probably not covered by patent) to make it worth while buying in bulk.

  • I've asked my EP twice if I should consider the NOACs instead of Warfarin. First time he said no because I was coming up for an ablation and he preferred me on Warfarin. Second time I asked (6 months ago) he said he preferred me on Warfarin because (a) the NOACs were new, and (b) there was no antidote (and he would possibly have been thinking of my dangerous occupation when he said that).

    I have seen a medical paper, and I know nothing about it, just found it on the web, that seemed to say they could test how well the new NOACs worked, or at least one of them, but the cost of setting up the lab to do it was very high, which put me off.

    Koll

  • Ive just joined this debate as to which anti coag I should be taking for my newly diagnosed AF, my local cardiologist wants me on Rivaroxaban or Apixaban but my GP favours warfarin. Im currently in Papworth hospital having heart transplant assessment, hoping someone will decide today!

  • ' We only prescribe Warfain here due to cost' -exact words from my GP. I hated the thought of Warfarin so having done a lot of Googling about NOAC's I decided Apixaban was the right drug for me. My EP supported me and 18 months and two liver function checking blood tests later I seem to be ok! I always try to research as much information as I can about AF and its associated problems and this site provides so much information and support.

  • I don't think a blanket recommendation for the NOACs is appropriate, despite what manufacturers or the paid researchers might say!

    This document from Barts sets out a balanced view:

    blizard.qmul.ac.uk/ceg-reso...

    It includes advice on AF treatment as well as anti-coagulation. It says Warfarin or new oral anticoagulants may be suitable after an informed discussion with the patient.

    The NICE guidance in this boolet says: "NOACs are appropriate for patients who are unable:

    • to take warfarin due to contraindications.

    • to adhere to the monitoring requirements

    associated with warfarin therapy.

    • to achieve an INR in the target therapeutic range

    despite adherence to treatment. TTR<65%.

    (It is doubtful whether NOAC have advantages in

    people who are not adherent to treatment)."

    So it comes down to Time in Therapeutic Range (TTR). >65% you're better off staying with warfarin.

    I think most people should be able to achieve at least 65%. Indeed with the help of a Coaguchek monitor, a lot more than 65%.

  • I slightly disagree with NICE point three - for anyone who is mentally compromised in any way (or their carer) it is much easier to pop a pill out of a dated pack than set up the daily dosage even with the use of a pill box, as the daily dose of Warfarin is not always the same.

    It seems there are many factors to take into account and in an ideal world there would be a discussion with one's own GP as soon as one is prescribed an anticoagulant - and pigs might fly......

  • MarkS

    The quote that Barts include appears to be suggesting (my reading of the qoute) that NOAC s should be used where Warfarin cannot be used. I have had a look at the NICE guidlines fo AF in CG 180 which doesn't appear to be saying that. I haven't read through the who;e document but copied and pasted the guidlines I found in CG 180 below.

    Do you have information as to where the guidelines quoted from Barts came from as I would be interested in reading them?

    FROM CG 180

    "........Anticoagulation

    Anticoagulation may be with apixaban, dabigatran etexilate, rivaroxaban or a vitamin K antagonist.

    Offer anticoagulation to people with a CHA2DS2-VASc score of 2 or above, taking bleeding risk into account. [new 2014]......."

    ".......................1.5 Interventions to prevent stroke

    1.5.1 Do not offer stroke prevention therapy to people aged under 65 years with atrial fibrillation and no risk factors other than their sex (that is, very low risk of stroke equating to a CHA2DS2-VASc score of 0 for men or 1 for women). [new 2014]

    Anticoagulation

    Anticoagulation may be with apixaban, dabigatran etexilate, rivaroxaban or a vitamin K antagonist.

    1.5.2 Consider anticoagulation for men with a CHA2DS2-VASc score of 1. Take the bleeding risk into account. [new 2014]

    1.5.3 Offer anticoagulation to people with a CHA2DS2-VASc score of 2 or above, taking bleeding risk into account. [new 2014]

    1.5.4 Discuss the options for anticoagulation with the person and base the choice on their clinical features and preferences. [new 2014].........."

  • Dave,

    There is this document from NICE which is an interesting read:

    nice.org.uk/guidance/cg180/...

    It mentions that new patients with more than one of the following are likely not get on as well with warfarin and should try NOACs:

    Female

    Age < 60

    Diabetes

    Heart disease

    High blood pressure

    Interacting drugs

    Smokers

    Non-caucasian

    (Not a full list)

    This is called the SAMETT2R2 test.

    The document also recommends that patients on NOACs should have a 3 monthly check up!

    Basically it means that in today's age you have to take responsibility for your own health and not expect someone else to do that for you.

    Mark

  • Very helpful info! It took me awhile to figure out what NOAC meant!!:) I'm on one of them, eliquis, for recently dx'd AFib. Also currently taking triple antibiotics long term for Pulmonary MAC, bacteria infection in lungs, which is one of the reasons my Boston Pulmonologist thinks this is a good choice for me. Fortunately my body seems to be tolerating all of this. I agree we have to be our own advocate, pro active rather than passive in terms of our health.

  • Mark

    Thanks for the link. Interesting reading which appears to be very supportive of the use of NOAC's

  • At the medicines review (requested by and given by my pharmacist) she said that test at 3, then 6 then 12 months for Apixaban and Simavastatin (though by that point I had switched to Warfarin).

  • Interesting then that my EP (Barts) recommended I take Dabigatran over any other?

    Of course I was seeing him privately so maybe that meant he was free to say what he really thought rather than tow the company line, not an uncommon experience I have found.

    I am getting more and more cynical about research as think that it can be so subjective, dependant upon who is funding the research and this applies to the NHS as well as large pharmaceutical companies!

  • My EP is at Barts but he recommended Apixaban. Initially when my GP said I had to go onto anticoagulation she said that she would not start me on Warfarin because she believed that I would be on one of the NOACs and that she wanted the EP to decide which one was he most suitable in my case as consultants not only have personal preferences but there are suitability aspects depending on both exact condition and the patient.

    For the first couple of months I saw him privately because I was still covered by my ex company's private medical scheme but because I was made redundant I have been under him at Barts.

  • I was diagnosed and treated in Tenerife! Care and treatment excellent! The Cardiologist did say when we were going through my drugs on discharge,in UK you might not stay on Apixaban because of the cost!

    I took documents to GP-no problems!

    I'm awaiting my second Cardioversion due in a couple of weeks,first one in Tenerife only worked for 48hrs,here's hoping!!

  • In my part of UK most GPS don't like all the blood tests associated with Warfarin,and a lot of people end up going to specific Warfarin clinics at our hospitals/or Cottage hospitals,and it all has to be paid for one way or another!

    To me,newly diagnosed it doesn't make sense,why do Drug companies develop newer,easier to take drugs when we have all this fuss!

  • When I was on Warfarin, the only part of the process that was remotely acceptable was that the blood tests were a) finger prick and not venous and b) taken 5 minutes away at the GP surgery with the result and dosage advice given immediately.

  • Yes I know,but I know how our local GPs feel( first hand knowledge,) I also know how the hospitals feel they take it on board because certain surgeries won't!

  • I think that one of the disadvantages of an NHS (and there are many, many advantages) is that it engenders a strange relationship between the doctor and the patient. Many of us put up with what's on offer, not what we would prefer. I don't think it would happen in any other professional relationship.

    Just because I am an NHS patient, I don't think I should have to accept the unacceptable when there are alternatives available.

  • Completely agree with you Mrs Pat.

    Unfortunately because GPs are completely Independant of the NHS, as in they are run as a private business, and NHS is centrally funded but funds distributed through local quangos who all seem to use varying criteria for what is funded and what isn't, we get a complete mish mash and contradictory advice.

  • I just wish we would get some straightforward honesty. I've been very lucky (so far) and not had any problems getting what I want.

  • Hi - I was taken off warfarin October 2010 when my heart was found to be in normal rhythm just before planned cardio version ..... December 2010 had a full stroke - wasn't allowed back to my teaching post and as a result ill health retirement.

    What can you tell me about rivaroxaban ?

    I was considered low risk because of age at that time (51)

    Low is still a risk.

    Ablation for AF ..... Same thing - I think I will have the ablation for the flutter I have - probably not for AF - heck - I amso not sure

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