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Atrial Fibrillation Support

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Warning - controversial opinion ahead!

Mrspat profile image
32 Replies

"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.

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32 Replies
BobD profile image
BobDVolunteer

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

Mrspat profile image
Mrspat in reply toBobD

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!

jeanjeannie50 profile image
jeanjeannie50

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

BobD profile image
BobDVolunteer in reply tojeanjeannie50

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

jeanjeannie50 profile image
jeanjeannie50 in reply toBobD

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

jeanjeannie50 profile image
jeanjeannie50

Re: Apixaban:

drugs.com/sfx/apixaban-side...

jeanjeannie50 profile image
jeanjeannie50

Re 1mg warfarin tablets which contain E123:

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

Mrspat profile image
Mrspat

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

Finvola profile image
Finvola

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.

toohardbasket profile image
toohardbasket

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....

Mrspat profile image
Mrspat in reply totoohardbasket

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

porsche profile image
porsche

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!

Jenbo6 profile image
Jenbo6

' 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.

MarkS profile image
MarkS

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%.

Buffafly profile image
Buffafly in reply toMarkS

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......

davegm profile image
davegm in reply toMarkS

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].........."

MarkS profile image
MarkS in reply todavegm

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

Mary10 profile image
Mary10 in reply toMarkS

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.

davegm profile image
davegm in reply toMarkS

Mark

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

PeterWh profile image
PeterWh in reply toMarkS

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).

CDreamer profile image
CDreamer in reply toMarkS

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!

PeterWh profile image
PeterWh in reply toCDreamer

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.

Annekw profile image
Annekw

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!!

Annekw profile image
Annekw

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!

Mrspat profile image
Mrspat in reply toAnnekw

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.

Annekw profile image
Annekw

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!

Mrspat profile image
Mrspat

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.

CDreamer profile image
CDreamer in reply toMrspat

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.

Mrspat profile image
Mrspat

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.

Susiebelle profile image
Susiebelle

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

In an ideal world people should be offered EVERY option.

Which would be much broader than this med or that med... it would include testing for the commonly known causes of afib....and those causes eliminated. If they have risk factors for stroke those risk factors should be adressed...if they smoke they should be offered smoking cessation programme if they have nutritional malnutirition obesity issues they should be offered a nutritional prpgramme...if they have some other risk factors they should be adressed. And any simple cause should be investigated and eliminated or adressed. As those things reduce risk and thats the aim right? Since medications reduce risk while also raising other risks those risks should in this ideal world be explained. The future consequences. Hardening arteries increased bp bleeds etc should be explained to patients. Their risks from smoking etc should be explained to them. The benifits should be explained to them too. Not jsut the benifits of medication but the benifits of all the things that confer a benifit. And all common causes should be investigated. It would be pointless if i had been put on blood thinners as i would still have an uninvestigated magnesium deficiency causing damage to all my organs and 20 years down the line i might get surgery which wouldnt identify the cause either. So i could be 60 and have been magnesium deficient for 20 plus years taking a medication that increases my risks for many things while decreasing a risk for one thing which if the cause were found and adressed i wouldnt have a problem nor need to take the risks at all. And before it even gets to getting a 24 hour monitor to find afib a gp in an ideal world would take a persons word for it that theyre heart was going AWOL and while waiting for the specialist the gp would investigate possible causes by doing the relevent testing and asking relevent questions. Even if you didnt have afib and just had some palpitations that were nothing serious you could have a cause underlying it. And we know that underlying conditions are a huge contributor to how people respond to diseases and infections so any underlying conditions should be a high priority. Its like theyre so busy stitching the nine they ignore the stitch in time that could save those nine. It doesnt seem urgent enough if somone walks in saying i feel my heart is going mad ...and yet all it would have taken my doctor was testing for common causes first and formost. I mean its like any troubleshoot ..you look at the common causes first. Have you turned it on and off again have you uninstalled and reinstalled... simple common known things shouldnt be overlooked. And from what ive heard of people obsessing over which med and which dose and what word to use for them....and they dont even know their magnesium levels or iron levels or any of the important relevent common simple causes. I mean my uncles blood was like tar.... he didnt drink enough water... he drank only coffee and dr pepper.... he ate mostly bread and cheese and butter.... yet he got a ton of medications all of which caused him side effects headaches constipation then he got laxitives and pain killers and ppis but he was still not drinking adequate water....day on day month after month year after year... whats the point of that? When he went into hospital the staff nurses tried to take blood and his veins were full and ripe but full of tar like blood ... he was sunken and shranken in like a dried out twig... they put him on an iv but it was far too late for that. He died. He had other issues at that point. But if he had drank even one single glass of water every day. Yet a simple thing is overlooked. My mom and aunt are elderly and one has diabetes when i aked my mom to do a diary of her food it turned out she mostly eats cheese and crackers .... thats not adequate nutrition. She has since got a juicer and green juicing eating various foods known to help diabetes and is off the majority of medications she was on. she doesnt need them. When she broke her hip she had morphine with morphine they give ppis with ppis bp goes up with bp meds cholesterol goes up they offered her statins then and she drew the line...stopped taking the morphine the ppis her bp normalised stopped taking the pb meds and her cholesterol came down. The consequences of what we do or dont put into are body are predictable known variants. We know if somone with diabetes eats crackers all day long they increase insulin resistance we know if we give ppis cholesterol or bp goes up ..we know many things cause afib and we know meds for clotting cause many issues so avoiding the most issues and risks and troubleshooting the issue by the most simple common antagonists and treating with the least risky and most beneficial actions medicines or treatments would be the most logical approach to any problem. And if people dont demand the most safe most beneficial least risky approach to their health then i think doctors will choose the msot simple thing for them the least risky thing for them and the most benificial to them. Which is probably gonna be noacs if they dont get paid for testing and warfarin if they get paid for testing certainly it wont be checking if your hydrated and just need to go home and remember to drink water. Just like your mechanic isnt going to tell you to change your petrol brand but will offer you a choice of a new engine or whatever he can get commission on. People are self serving and self interested and want to get the most benifit for the least risk and thats often at odds with the persons who youre interacting with. You want to sell for the highest price they want to buy for the lowest. How do you negotiate the best deal for yourself with anyone? Know what your buying and selling. If its a mechanic then know your engines...know the cost of parts...if its a builder know the materials and costs involved so you can assess if hes going to do the best job for you. You dont need to know the minutia but just knowing the common things is useful. If you know to turn on and off again install reinstall you dont have to leave your laptop in the hands of a technician ... or if he advises you need a replacement hard drive and gives you the option of ssd or disk drive you can trust him to decide which is better but you can at least know enough to not get norton security system installed or buy something you mayne dont need because he hasnt troubleshooted it for common issues. A good laptop doctor will do the simplest commonest tests. They will inform you of pros and cons. They will give you the information you need to do simple things first and if those fail then they will suggest options for solutions you. But they look for obvious problems first. Thats the sign of a good expert. A bad expert is somone who tanks your basement gives you the option of injecting damp proof chems or lining with plastic but never looks at your gutters or drains to find a cause and eliminate it.

So for new afibbers i dont think which sort of tanking plaster is important untill youve had your gutters and drains checked. After all that is done and eliminated then you can think about the nuances when youve got not other options left. Like any noob, often energy is put into discussing something which is at a higher level than nessisary without a basic foundational understanding of common basic things. Which is why elderly people often go into the complex advances settings on their phone before theyve understood what an app even is ... why new sewers often fiddle with the tensioner before understanding how to thread the machine. I dont think a newly diagnoses afibber should be deciding between medications at all. There are simpler questions to be answered and simpler things to be done and completed and resolved and eliminated and not knowing what those things are as noobs of any subject its very difficult to manage ..which is why good expert advice always starts with simple things. In my arrogant opinion.

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