Anticoagulants?: I am 64 years old and... - Atrial Fibrillati...

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Anticoagulants?

highbury44 profile image
89 Replies

I am 64 years old and have had paroxysmal AF for 17 years ,pretty well controlled with medication.I do have episodes of AF but at the most last up to 3hrs.We are retired and when we go on a cruise holiday it can be 3/4 weeks at a time so I requested to my GP that I carry around a Pill in the Pocket arrangement for anticoagulants just in case I had an episode of AF on the ship which didn't revert back to NSR,which she agreed was a good idea.I have never had to use them,but I felt it was a bit of a safety blanket.My AF is currently become a little unstable again over the past 10 days with more frequent episodes of AF up to 5 hrs in duration.This previously happened 6 years ago and eventually settled down.We have a new online system at the GP practice called Anima for contacting the practice.As I was uncertain as to how long I needed to be in AF before I should take an anticoagulant I messaged them for advice.I received,what I thought was a surprising reply to say that no one under the age of 65 should take anticoagulants ,even if they were in permanent AF as they would not form clots,so long as they had a CHADS 2 VASC score of 0.Is this correct?

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89 Replies
BobD profile image
BobDVolunteer

That is the most dangerous and miss-leading advice I have ever heard. Ask the people with a Chadsvasc score of zero who have had strokes. Few here would even entertain the idea of PIP anticoagulation I suspect but its your choice.

Terriersgalore profile image
Terriersgalore in reply to BobD

I, and I think the majority of people on here, have been on anticoagulants since the onset of my AF diagnosis. I don’t understand this decision. I would get a second opinion.

2023AFibber profile image
2023AFibber in reply to BobD

Totally agree. Anticoagulant is usually 1- 2 times per day NOT PIP

mjames1 profile image
mjames1

I received,what I thought was a surprising reply to say that no one under the age of 65 should take anticoagulants ,even if they were in permanent AF as they would not form clots,so long as they had a CHADS 2 VASC score of 0.Is this correct?

The snippet "would not form clots", assuming this is the doctor's exact words, would be more accurate as "would likely not form clots", or more guidelineish that the bleed risk outweights the stroke risk for CHADS 0 therefore in this group, anticoagulants are not recommended. Other than that, the statement is consistent with the current UK guidelines, however always best to check yourself. The anti-coagulation issue can be very controversial here with a lot of confirmation bias on both sides of the discussion, so best to stick with the actual guidelines and the guidance of a trusted physician who knows your complete medical history than simply lay opinions and anecdotals.

Jim

Suebo2 profile image
Suebo2 in reply to mjames1

Guidance is just a guide, not the law.

wilsond profile image
wilsond in reply to mjames1

Getting to find a) a trusted GP and b) actually conversing with them let alone seeing them is the thing!

AF2023 profile image
AF2023 in reply to mjames1

Hi, I have had AF for over a year now . My consultant initially said that as I was 63, nearly 64 at the time that he wouldn't put me on a blood thinner then, albeit that at 65 it would be 'automatic'. However he contacted me not long afterwards to say that some of his colleagues had attended a conference where new 'evidence/research' was presented and changed the thinking on this 'over 65 policy' He put me on 1 x Edoxaban daily.

Paul

CDreamer profile image
CDreamer

CHADSVASC score of 0-1 was to my understanding, low risk for stroke so patient choice. Score 1-2 - advised. 2 or more strongly advised unless contraindications.

There is some evidence to show that stopping and starting anticoagulants as you do using as a PIP raises risk of stroke so like Bob, although I looked into doing this 10 years ago when I was also 64, my consultant was very against PIP but eventually agreed to stop a/c as I had no AF for over 12 months (that I was aware of) about 9 months later I had a TIA. Couldn’t get back on them fast enough.

Our surgery has recently gone to Anima which they use as a triaging system but messages are always answered by a person. I would find out who that person was and question that advice as no one could possibly say that no one under the age of 65 should take anticoagulants ,even if they were in permanent AF as they would not form clots,so long as they had a CHADS 2 VASC score of 0.Is this correct?

NO IT IS NOT CORRECT! Plenty of people on this forum only found out they have AF because they had a stroke!

pusillanimous profile image
pusillanimous in reply to CDreamer

I was under the impression that the mere fact of being female gave you a score of 1? I'm obsessive about taking my anticoagulant because I too have read that stopping and starting is very dangerous.

Buzby62 profile image
Buzby62 in reply to pusillanimous

Best wishes

Click on screenshot to open up
wilsond profile image
wilsond in reply to Buzby62

0 is a low risk, but still a risk, I agree

Ersilia2 profile image
Ersilia2 in reply to pusillanimous

Yes female 1 and over 65 score of 2......thats what my score is and I am on anticoagulants

highbury44 profile image
highbury44

I am aware of the GP in question and I am aware I should take the anticoagulants but my question that I was asking this GP still remains, at what point should I take anticoagulants if I remain in AF ?

mjames1 profile image
mjames1 in reply to highbury44

You seem to be asking two questions. The first question was if the advice not to take anticoagulants if you have CHADS 0 is correct. I answered that it is correct according to UK guidelines, but always best to double check yourself and of course with your doctor.

The second question is "at what point should I take AC's if I remain in afib". Well, according to what you were told and per guidelines, you never should take AC's even if you remain in afib for a long time if your CHADS score is zero. Again, best to clarify with your doctor.

Again, there are guidelines and advice from a trusted doctor. These will be your best guides.

Jim

highbury44 profile image
highbury44 in reply to mjames1

Well if that’s the guidelines it’s ridiculous.

Tapanac profile image
Tapanac in reply to highbury44

Your chad score can’t be zero if you are a woman. Just bring female is 1

in reply to Tapanac

Ummm, nowhere does the OP say that they're a woman. I made the same mistake and wrote a fairly extensive response based on that, then had to go back and read their post again carefully.....and change my response. Funny isn't it? I have no idea what made me assume they're female.

Tapanac profile image
Tapanac in reply to

Yes I did wonder after I had written snd the profile photo didn’t give a clue

Best wishes

Pat

Ducky2003 profile image
Ducky2003 in reply to

Seeing an email with part of a reply you had typed to me, you seem to make a habit of assuming things.🤔. Upon clicking the link to see the rest of your response, I see you have deleted it but for the record, I do not assume there isn't a risk taking anticoagulants.

I am fully aware of the risks of all the medications I take so, with respect, your assumption about me was incorrect.The poster was asking for opinions and I gave mine which is why I finished my comment with "I personally".

Just wanted to clarify things.

in reply to Ducky2003

This topic gets me pretty hot under the collar and I deleted my reply pretty much immediately because I know that that can lead me to get into unnecessary clashes with people who are, as you say, just expressing an opinion.

I think it's inappropriate for you to publically respond to a post that was taken down immediately and that you couldn't even access all that I said. Please take it down.

Ducky2003 profile image
Ducky2003 in reply to

I think it inappropriate for folk to make assumptions in quite a forthright manner and I have no idea how long your reply was visible and who saw it so, my clarification comment still stands.

Auriculaire profile image
Auriculaire in reply to mjames1

The advice on taking anticoagulants might be consistent with NICE guidelines but the statement that a person cannot have a clot form if they are under 65 and have a score of 0 is absolute nonsense. At low risk and cannot happen are not the same and the person who made this stupid statement needs to be pulled up. If it was an actual doctor this is appalling.

mjames1 profile image
mjames1 in reply to Auriculaire

Yes, my response was to the "advice" ie whether or not a Chads score of zero necessitated taking anticoagulation per UK guidelines. Isn't that what the OP was asking about? Of course anyone can get a blood clot, with any Chads score, whether or not they even have atrial fibrillation. The whole idea of chad's is to weigh risks versus rewards. Something that seems to have gotten lost in some of the comments.

Jim

Mugsy15 profile image
Mugsy15 in reply to Auriculaire

I don't understand why so many people are appalled by the advice from the surgery; all they have done is made a statement which is consistent with the guidelines!

At a Chad score of 0 you are considered to be at a greater risk of a brain bleed stroke and other catastrophic internal bleeding caused or made worse by the ACs. The medical profession must draw the risk v benefit line somewhere and that's where it is.

Whether or not one personally agrees with the Chad and Hasbled guidelines, the surgery have applied them correctly. Where they appear to have veered into the ridiculous is to state that 'clots do not form' in those with a zero score. That's obviously nonsense and I find it difficult to believe that was the actual wording. I also agree with those who point out that using ACs as a PIP is ill-advised for several reasons.

Peacockmumma profile image
Peacockmumma in reply to highbury44

ACs are everyday not just a one off ..that’s what I’m taking anyway..2 a day

Tapanac profile image
Tapanac in reply to highbury44

Permanently. Definitely not as a pip starting and stopping

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to highbury44

Hi

Anti-agulant has always been a debating action.

But about 2 years ago some research suggested a pill in the pocket for those why

had af episodes now and then.

there are side effects taking it and there are consequences like tia, stroke, heart attack

if a clot forms.

i had a stroke in sept 2019 with AF but thyroid cancer was discovered in a carotid arteries scan. I was not on any meds at the time except B12 for deficiency.

I chose PRADAXA as at 70 was given 110mg x twice day.

New research says no anti-agulant with cancer because of the risk of internal bleeding.

A friend who had MS no stroke but with valve replacement did not take her PRADAXA for a week and ended up with a mild stroke.

I have had 3 operations since 2019 stopping PRADAXA 3x24-hr day. stop with another day for operating day and another 1-2 days after and not had issues. My stroke was an Embolic Stroke to the left frontal lobe. I could not talk, had dropsy in right hand and dropped mouth.

I agree 1 for female. I would have thought 1-2 for AF. A personal decision.

cheri JOY. 75. (NZ)

Buzby62 profile image
Buzby62

Hi, here is a link to the info sheet

api.heartrhythmalliance.org...

Read it all but especially the section on Personal Stroke Risk, this contradicts the statement you was given.

Best wishes

in reply to Buzby62

I'm sorry but I think that leaflet is nonsense. It's stating that the 'tipping point' to take anticoagulants is CHADSVASC2 score of 1. This would mean that all females with AFib should be taking anticoagulants regardless of age. The guidelines are that a score of 2+ would indicate anticoagulants, as far as I'm aware. And (I believe) that the +1 for females is somewhat contraversial.

Buzby62 profile image
Buzby62 in reply to

Not all females, just the ones with AF.

If you don’t have AF you don’t apply to it.

That’s my understanding.

Best wishes

in reply to Buzby62

I specified 'all females with AFib'. As I said, it's ridiculous to say that all women with AFib should be taking anticoagulants regardless of age. This 'score' thing is a blunt instrument and needs to be applied with discretion.

Buzby62 profile image
Buzby62 in reply to

I agree, sorry I was just making it clear to others reading who may have picked up on the all females.

I think the guidance is it’s suggested if you meet a score and to be discussed and agreed with your medics. Some will be prescribed at 0 and some not at 2 depending on personal preference and conditions.

Best wishes

Sixtyslidogirl profile image
Sixtyslidogirl in reply to

It’s interesting to read the Nice guidance in relation to this, and the underlying research, which indicates that stroke prevalence in those with a score of 1 is very low indeed. Doesn’t mean zero though. No one has a zero chance of a stroke.

Auriculaire profile image
Auriculaire in reply to

That is probably why the European guidelines have been changed so as to ignore the point for being female as long as there are no comorbidities.

in reply to Auriculaire

Interesting! Thank you for that info.

Redactrice profile image
Redactrice in reply to Auriculaire

Very interesting -- I didn't know that. Thank you for pointing it out. (Female, 60, 12yrs of paroxysmal AF, now persistent AF after having Covid; no comorbidities)

Mugsy15 profile image
Mugsy15 in reply to Buzby62

I can't see where it contradicts the statement?

Buzby62 profile image
Buzby62 in reply to Mugsy15

It’s just my opinion but I think these two statements contradict. The main purpose of my reply was to make the information available to anyone reading and not take that statement at face value without a conversation with their medics.

From OP’s post: no one under the age of 65 should take anticoagulants ,even if they were in permanent AF as they would not form clots,so long as they had a CHADS 2 VASC score of 0

From info sheet: However, there are situations where your doctor may recommend that using anticoagulants may be of value despite what appears to be a low score (eg score of zero) using the above system. They will discuss this if it is the case.

Best Wishes

Mugsy15 profile image
Mugsy15 in reply to Buzby62

Yes, I see your point; it's the use of the word(s) 'NO-ONE' that is at odds with the guidance. There will be those who have a zero score but, for example, a family history of strokes who would be benefit from AC therapy despite their score.

southkorea profile image
southkorea

I was told I did not need to go on them until I was 65. Up until then I was on aspirin.

Peacockmumma profile image
Peacockmumma in reply to southkorea

65..the magic age.. I started at 64..what’s in a year? Safe than sorry was my thoughts

BenHall1 profile image
BenHall1

Maybe the NICE website has some formal guidelines that you could investigate as a start of a way forward, I believe these guidelines may form some sort of background to a GP's thinking.

CDreamer profile image
CDreamer in reply to BenHall1

TBH I’d take the AFA advice over NICE any day John.

BenHall1 profile image
BenHall1 in reply to CDreamer

....and therein lies my problem ( and probably many others too) ....my GP wouldn't know what AFA was much less follow its advice. Thats why I went private, paid me own way and hired my own cardiac consultant recently bypassing my surgery completely !

CDreamer profile image
CDreamer in reply to BenHall1

A neighbours’ son worked for NICE - recently resigned in disgust but you are correct, not enough GPs are aware enough about arrhythmias.

opal11uk profile image
opal11uk

As someone who has had a stroke as a result of not being anti coagulated I am very surprised and disappointed at this mis information. If you are taking Warfarin for example you need regular blood tests but if you are taking one of the new, as I am such taking Pradaxa, you are tested once every 6 months. You are at risk without taking them believe me. I was 54 when I had a stroke!!!

BenHall1 profile image
BenHall1 in reply to opal11uk

I've tried ( at the constant urging/pestering of my damn GP ) Edoxaban and it gave me the horrors. Sleeping at night was a constant battle with monsters from the deep, gremlins and assorted crap .... to the point that I was always having broken sleep. ( The rotten stuff made my nights something beyond a Vincent Price Horror movie ). I told my GP, fairly bluntly, what she could do with these NOAC's. These young GP's seem to think their medical quals give them a supreme/divine right to prescribe whatever they think fit.

Apart from this stupid flirtation with Edoxaban I've been on Warfarin for 14 years. I've self tested ( with my own Coaguchek XS INR testing device ) my own INR virtually all that time and with the support of a brilliant INR Clinic and staff have not had a problem. I might add I'm now back on Warfarin and my GP is now back in her place in the world !! GP's don't know best ! I might add ........ I've had three surgical procedures, one a knee replacement - where I've had top stop Warfarin and restart it ......... no sweat.

If anyone buys their own INR testing device (Coaguchek XS ) and use it at home there is nothing wrong with Warfarin. Its down to your own brain if you forget to take a tablet or forget to INR test. I am on anything from 2 week to 10 week testing dates !

In my view 'Big Pharma' and the BMA ( in the Uk ) have mounted a very aggressive anti Warfarin campaign over recent years - not always to the benefit of the patient. But then again why would either organisations think of the patient.

Suebo2 profile image
Suebo2

I had a discussion with the stroke nurses about this for a friend, and they suggested having anticoagulants. So I strongly suggest that you do consider taking them, and if in doubt speak to a strike physician at your hospital. GPs are great, but it’s always good to speak to an expert The advice is 65, and you are 64🤷‍♀️

I would ask an expert. Good luck.

secondtry profile image
secondtry

ACs are controversial!

My experience:

Like you AF well controlled by medication for 11 years (59-70yo), so declined the AC suggestion. I should add I was very active and only had two 30 min AF episodes.

Researched widely incl European guidelines, conscious that frequently quoted published research was limited and likely financed by those with a commercial interest in drugs. A tad cynical I know but I also imagine other contradictory research never saw the light of day.

Took into account PIP is not ideal and once started safest to stay on them for life - just my hunch that the body will switch off its own protective action, which may not restart promptly as soon as ACs are stopped. Also I took into account bleeds (no easy reversal agent with DOACs) and other possible side effects. Lastly, I understand ACs do not provide 100% stroke protection but rather 60-90% depending on personal circumstances.

Many people have AF and don't know it (I think I read a figure around 10%!) - they are not all dropping like flies. It is often said that some only find out when they have a stroke; just my hunch but as stress is a key AF trigger for some it may be the stroke started the AF ie 'chicken & egg' situation.

After 11 years, the Flecainide drug or age may have developed my AF into Flutter, so at that point (2 months ago) I agreed to go on ACs (Edoxaban) and that has reduced my anxiety with no noticeable side effects so far. My GP surgery did do a blood test re my kidneys one month in.

So long story short, the AC decision is very individual and not clear cut. Hope something above helps in making your decision easier 🤔.

in reply to secondtry

Thank you so much for this very balanced response.

Kaz747 profile image
Kaz747

I'm now 60 but went in for an ablation six years ago. I had been put on anticoagulants a few months previously because of AF and AFlutter. I was advised to stop them for two days before the ablation however when they conducted a TOE (transoesophegeal echocardiagram) to check before commencing the ablation, they found a small clot so the procedure was abandoned and I had to go in a few months later for another try.

My EP was very surprised that a clot formed so quickly and he said that with my history, he wanted me to stay on anticoagulants for life. Having seen my grandmother disabled by strokes in her 50s and 60s, I'm happy to comply. I'm in Australia.

Peacockmumma profile image
Peacockmumma

surprised! I know 65 is their ‘age’ they quote for Chads.

At 64 I asked why wait til 65..was someone from the surgery going to contact me and say hi,.happy birthday have anticoagulants…good point they said..want them now? Not really but essential I think so been on them since 64 .fee l absolutely fine no side affects . Take them !

oscarfox49 profile image
oscarfox49

Shows there all still idiots giving medical advice. If AF is going to cause a clot and possibly a stroke, it will do so and won't read your Chads score first!

30912 profile image
30912

A no brainier for me. Cardiologist recommended I start taking them 6 years ago even though I have a low Chads score. I was happy with that seeing that all the male lineage of my family have either died of a stroke or complications thereafter. It doesn't matter that my bouts of AF could be months apart. I was 63 when prescribed them.

MarkS profile image
MarkS

To answer your question, no. What the surgery says is rubbish. I was 58, played hockey and was very fit and had a CHADS2VASC score of 0 and on aspirin. So in the lowest possible risk category. I still had a TIA. I'm now on warfarin which I self-manage.

You do not need to actually be in AF to have a stroke. AF and stroke are believed to have the same underlying cause - inflammation. The lower pumping efficiency in AF may slightly increase the risk. But the fact is that if you have AF, you are at risk of a stroke at any time. I think you're lucky to have got away with it so far but I wouldn't risk it any longer.

One other point - if you have AF, even without a stroke, you are at 40% higher risk of dementia. That risk is eliminated if you are on anticoagulants.

Redactrice profile image
Redactrice in reply to MarkS

I hadn't known about the 40% risk for dementia and the protective effect of anticoagulants. Thank you for that.

Tapanac profile image
Tapanac

goodness me anyone with afib should be on permanent anticoagulants. In my opinion your GP surgery was very wrong. I was in my late 50s early 60s when I was started on them. As explained afib whether permanent or not can develop blood clots behind the heart resulting in a stroke

If you are worried about bleeds, please don’t I fell very badly a couple of years ago crashing my head (awful) I felt fine but knew should go to hospital glad I did as I had developed a bleed no problem a reversal drug via a cannula and sent home

I am on apixaban I was told by my EP it is the kindest ac to the brain and stomach I’ve been on it now for nearly 20 years

Enjoy your holiday but please see about your medication

ozziebob profile image
ozziebob in reply to Tapanac

I am worried about bleeds.

Your bleed was an acute event, sudden and with a known cause. But your reply didn't address spontaneous (ie.unexplained) chronic bleeds, which is my ongoing concern after a previous such event.

CDreamer profile image
CDreamer in reply to ozziebob

There are always some for whom a/c s are contraindicated because bleed risk is considered higher.

ozziebob profile image
ozziebob in reply to CDreamer

Yes, that's why I was surprised when Haematology (via a young newly trained pharmacist) recommended I take apixaban. All without any opportunity for me to question any of the multidisciplinary team(?) that I was told would have been involved in deciding on this recommendation.🤔 No cardiologist (only an arrhythmia nurse), no neurosurgeon, and no haematologist.

Thanks for your interest.

bob

Tapanac profile image
Tapanac in reply to ozziebob

Aaah no I’m sorry. I hope you are ok now.

ozziebob profile image
ozziebob in reply to Tapanac

Yes, ok thanks, but I have never started anticoagulation, even with a cha2ds2-vasc score of 2 for age only (77).

I have to say, that seems like a remarkably poorly worded response. The fact is that anticoagulants (like all medical interventions to a greater or lesser extent) are a matter of benefit vs risk. This is why the CHADSVASC score was invented, using statistical probabilities. Of course, anyone of any age can have a stroke for any number of reasons.

My understanding of the guidelines are that for anyone with a Chadsvasc2 score of 2+ the risk (of taking anticoagulants) is outweighed by the stroke risk. You will be +1 when you turn 65. As others have said, these are guidelines, not written in stone. You can certainly request a daily prescription if you would feel safer, or you can wait. Personally I'd be writing to the practice manager of my surgery to complain about this really rubbish and inaccurate response to your query!

And as your AFib has progressed somewhat it might be time for you to be asking to see an EP (electrophysiologist) rather than having your GPs automated service manage your condition.

Rainfern profile image
Rainfern in reply to

Well said.

OldGrit profile image
OldGrit

For me, having AF and not taking ACs is tantamount to buying a ticket for a very ugly lottery.

I thought a very symptomatic episode of PAF was my first but when they checked my pacemaker (installed years ago for Bradycardia) they revealed a couple of events prior to my “first” event. Proof enough that I don’t always know when I have an episode.

I was anti ACs initially but it didn’t take long before I changed my mind and then I joined a trial.

OzJames profile image
OzJames

My cardiologist said clots can start forming if you’ve been in AF more than 24 hours, not always in any case when I’m away if I go into AF for more than a day my protocol is to start Apixiban and stay on it for 30 days even if I revert back after a few days into sinus. That advice was given to me before I turned 65. The other aspect is he may do a TOE to check when I return

Ducky2003 profile image
Ducky2003

I was put on anticoagulants when I was 50. I would never consider a pip approach with anticoagulants. By the time you get a pill down your neck, the damage could be done. What if your AF kicks off during the night and you don't realise you're having an attack? What if you have an attack you don't actually notice? Too many "what ifs" for me and having seen the devastating effects of a stroke, I would personally not like to risk it.

wilsond profile image
wilsond in reply to Ducky2003

Hear hear Ducky

Rainfern profile image
Rainfern

This goes against all the latest research regardless of Nice guidelines. Someone posted a link only a few days ago to research suggesting anticoagulants are indicated for AF in prevention of stroke and vascular dementia at all ages.

wilsond profile image
wilsond

What a load of absolute CODSWALLOP. I would report this dangerous and untrue statement!Beggars belief.

Many people with score of 0 have had AF strokes,fatal or otherwise under the age of 65

LaceyLady profile image
LaceyLady

women score 1 just for being women, then get another for being over 65, then another for another ailment.

I really didn’t have a choice, paternal history of strokes. I really didn’t want to as I’m a ‘bleeder’ already. I am today REALLY glad that I am, just had a horrible fall, negligence by the hotel I’m staying at, a depression for an outdoor shower ‘tray’ same colour as surrounding slabs which I didn’t notice and I’ve a massive haematoma on derrière/hip. Luckily not flying home yet and in anticoagulant, which has added to the drama 🤯

Rainfern profile image
Rainfern in reply to LaceyLady

Oh you poor thing! What a horrible thing to happen on holiday! Hope you are soon feeling better 🤗

Maglyn profile image
Maglyn in reply to LaceyLady

Loved your description of "women"!! During one of my rather heated discussions with my GP I ended up telling her that I felt that I was being treated like a neurotic, elderly woman as she had caused me so much stress. Won't go into details, but agree with you 100%. Many people think we've "moved on" but it still continues. My husband, who is with the same practice, and 85 is not treated anywhere near the same way. I'm 75 and we're both very active and don't look or feel our age. That speaks volumes to me. Wishing you all the best and a speedy recovery.

LaceyLady profile image
LaceyLady in reply to Maglyn

Thank you, I’ve just attained my 67th yr. Definitely a feminist!! I could rant for England. DO NOT accept or respond to anyone calling you an ‘old aged pensioner’! SENIOR CITIZENS no less!, I’ve had a GP talk over me consistently, a bloke of course! Got rid of him! My lady GP came back from maternity leave and we do get on fine. I’ve been a qualified multi disciplined Complementary Therapist for 25yrs and take no prisoners. The dr I saw yesterday here in Italy was good, direct and b the way my bill is 🙄 but there you are 🤷🏼‍♀️ He was nothing less than I expected.

Maglyn profile image
Maglyn in reply to LaceyLady

Agree, yet again. So glad you stick to your guns. I find too many women "give up" so easily. I do fight as much as I can for my rights, but then we are labelled "aggressive"! I changed my GP in my practice as he was such a misogynist and incredibly rude and now have a female, but she isn't much better. I am definitely not a racist, but unfortunately the first doctor was from Bangladesh and now this female is from Pakistan. I was treated for "anxiety" by the surgery and a couple of weeks later, admitted to hospital with a heart attack! I'm not sure what the answer is in the UK. We are going downhill rapidly. I find my friends who live abroad receive far better treatment and many of them are in France where there is a partial welfare system and it seems to be more efficient. They use pharmacists more therefore freeing up GP appointments. Keep up the good work!

MWIC profile image
MWIC

I have AF - I had an ablation Dec and at the moment no longer have any episodes (and fingers crossed it stays that way) - I’m still on Apixaban and have absolutely no intention of coming off them regardless of instances of AF. I had a long conversation on anticoagulants with a private EP before getting onto a waiting list for ablation and his words stay with me and are the source of my view on this - appreciate that there are some who are at greater risk being in an anticoagulant but I think it’s clear that the risk of stroke through AF is a factor that needs to be considered and my view on the risk modelling (CHAD score) is very likely out of date and not the whole story

RoyMacDonald profile image
RoyMacDonald

Apixaban only delays clotting for about 20 mins, according to the information I've read. I didn't take the Apixaban the GP and Consultant recommended when I self diagnosed the AF, because of my fear of a bleed because my Father died of a bleed. I don't think he was on Apixaban. He did have Angina for many years.

18 months after my diagnosis I had a major stroke. I always take my Apixaban religiously now.

Apixaban is not suitable to be used as a PIP. Not sure where you got the idea that it could be? Also very surprised that your Doctor did not tell you that. It takes a full two days to give full protection so trying to use it as a PIP is just ridiculous.

All the best.

Roy

Jetcat profile image
Jetcat

Hi Highbury. I was started on warfarin leading up to my ablations for AFIB, first ablation was at age 45 then after a while I was taken off it because of a zero chads and very little Afib episodes.

I did question this decision with the cardiologist because even with low afib episodes we are still at a higher risk of strokes unfortunately!

My new cardiologist has put me straight back on anticoagulants mainly because of one high blood pressure reading after a stressful drive to my appointment so I am now chads1. But When I told him that I’d been repeatedly asking the other cardiologist for anticoagulants and was refused he was shocked.!!

He told me anticoagulants save a lot of people from having strokes and that is fact👍

Iv also read that AFIB strokes are generally more severe and dangerous possibly fatal than a general stoke too unfortunately. I personally have never heard anticoagulants used as a PIP but I may be wrong.? Given your age and a AFIB diagnosis I would definitely be pressing for anticoagulants even if you’re AFIB episodes are short and infrequent.? the last thing you need is a stroke that could stop you from doing all sorts in life including cruising and holidays.?? Take care mate and best wishes.

Ron👍

Visigoth profile image
Visigoth

As mentioned by someone above, I posted a link a couple of days ago to an article on research showing that anticoagulants significantly reduce the risk of vascular dementia, so there’s much more to consider than your stroke risk. If you check my profile you’ll see the link to the article.

Maglyn profile image
Maglyn

I agree with many on here, bad advice. I was prescribed anti-coagulants on a daily basis immediately, as is anyone of any age who is diagnosed with AF. I have since seen a cardiologist/EP privately (too long a waiting list for NHS and no help from GP) and even though there is a question mark hanging over my head as to whether the "event" I experienced was AF, he continued to prescribe anti-coagulants as he thought I may have had a small blood clot causing my symptoms. I have never ever heard of an anti-coagulant being a PIP. Other medication, yes, but never those. I have had great difficulties with my GP, getting an appointment and advice, and when I have eventually been able to speak to her, she has even questioned the diagnoses of the cardiologist/EP which shocked me. Are you not under a cardiologist/EP and if not, why not? I wish you good luck with your situation and hope you continue to enjoy your cruises.

ozziebob profile image
ozziebob in reply to Maglyn

Maglyn,

Here's a link to the current REACT-AF trial being undertaken in USA on a PIP approach to anticoagulation ...

clinicaltrials.gov/study/NC...

And here's an article “Pill‐in‐Pocket” anticoagulation for stroke prevention in atrial fibrillation by Graham Peigh MD, MSc1 and Rod S. Passman MD" that explains the rationale for such a trial...

onlinelibrary.wiley.com/doi...

So now you have at least heard of PIP anticoagulation. It is of interest to me and a small minority of others on the Forum, some even already practice it with EP/Cardiologist approval, but sadly, results of this trial will be years away, unless negative interim results require an early termination.

bob

Maglyn profile image
Maglyn in reply to ozziebob

Bob. Many thanks for that, very interesting. One of my concerns is that many people with AF are not aware they are experiencing an episode and not everyone owns a gadget to detect this and are therefore in blissful ignorance, which is more dangerous. Once diagnosed, the NHS GPs automatically prescribe daily anticoagulants. The PIP sounds great, as the anti-coagulant I'm prescribed has side effects for me. I also think there may well be the other factor of cost for the NHS. Possibly with the PIP anticoagulant, patients may have to be monitored more closely and as the majority of AFib sufferers are NHS patients, may not be able to afford private monitoring, as in the US with many having private insurance. I have gone down the private route here in the UK as I had a complicated diagnosis and had to wait months to see a cardiologist and I opted for an EP as well and he's been great. Hopefully more information will come to light in the UK and it may become the norm for a PIP. Fingers crossed. Once again, many thanks for the information. Lynne

ozziebob profile image
ozziebob in reply to Maglyn

Lynne,

Thanks for your considered and sympathetic reply.

My thinking is that the cost of a monitoring device (perhaps a cheaper specially adapted AF detecting Apple ecg watch) would be more than offset by the potential reduction in the use of DOACs, which are very expensive over a lifetime even if supplied by the NHS as here in UK. So suitable patients could be given these devices if the PIP approach is eventually NICE approved.

One other issue was raised recently here when a Forum member posted older unpublicised research that concluded that stopping and starting DOACs is more dangerous than continuing without interruption. However, this research would be known both to the US Govt Medical Authority who commissioned this research, as well as to the medical team directing the REACT-AF trial, so the truth of this older research should reveal itself during the REACT-AF trial.

bob

Iamfuzzyduck profile image
Iamfuzzyduck

Information given to me by my EP was to start eliquis if I have an afib event that lasts 5 hours or longer, and then to stay on it for at least two weeks I think. I take it now because I had an ablation recently and I really don’t have any side effects from the medication…I will have it discontinued in a month or two if my holter monitor is clear.

Rocky-athlete profile image
Rocky-athlete

I have three things that might add to this discussion.

First and most importantly, if you go to MDCalc and look at for CHA₂DS₂-VASc, then go to the bottom and look at "Evidence," you can see the actual risks of ischemic stroke or TIA with each CHA₂DS₂-VASc score. (Pasted below, poorly formatted). Similarly, you can look at evidence for HAS-BLED. Comparing these give insight into the risk-benefit of direct oral anti-coagulants (DOACs).

Second, this paper describes new(ish) DOAC reversal agents and other modifiable bleeding risk factors (e.g. NSAIDS): Katie White, Uzma Faruqi, and Alexander (Ander) T Cohen. Br J Cardiol. 2022; 29(1): 1. New agents for DOAC reversal: a practical management review.

Third, my cardiologist thought it advisable to carry a DOAC in the wilderness when it could take days to evacuate. I am 60 with paroxysmal A-Fib and CHA₂DS₂-VASc = 0 . The idea was that this would reduce the time before cardioversion from 21 days to 20, 19, or 18. I've never needed a cardioversion, so it is unlikely to be of benefit, but having it along would provide the option.

Finally, this is conjecture: Perhaps this third point is what the initial "yes, carry them on the cruise" was based upon. Then, perhaps, a nurse or other health care provider was not privy to this communication and followed the guidelines appropriately.

R

PS Incidentally, my mother is 95 and has a high CHA₂DS₂-VASc, high HAS-BLED, and nearly died/nearly had a leg amputated for a massive lower leg hematoma (20 cm long x 7 cm wide x 4 cm protruding) from bumping it on furniture. She is no longer on a DOAC. It is all about carefully considered risk-benefit in consultation with specialists.

FACTS & FIGURES

Interpretation:

CHA₂DS₂-VASc Score

Risk of ischemic stroke

Risk of stroke/TIA/systemic embolism

0

0.2%

0.3%

1

0.6%

0.9%

2

2.2%

2.9%

3

3.2%

4.6%

4

4.8%

6.7%

5

7.2%

10.0%

6

9.7%

13.6%

7

11.2%

15.7%

8

10.8%

15.2%

9

12.2%

17.4%

From Friberg 2012. Note the paradoxical decrease in risk between 7 and 8 points; this reflects the findings published in the study, but in general, assume increasing risk with higher scores.

LITERATURE

ORIGINAL/PRIMARY REFERENCE

Research Paper

Lip GY, Nieuwlaat R, Pisters R, Lane DA, Crijns HJ. Refining clinical risk stratification for predicting stroke and thromboembolism in atrial fibrillation using a novel risk factor-based approach: the euro heart survey on atrial fibrillation. Chest. 2010 Feb;137(2):263-72. doi: 10.1378/chest.09-1584. Epub 2009 Sep 17. PubMed PMID: 19762550.

VALIDATION

Research Paper

Ntaios G, et al. CHADS2, CHA2DS2-VASc, and long-term stroke outcome in patients without atrial fibrillation. March 12, 2013 80:1009-1017; published ahead of print February 13, 2013

Research Paper

Friberg L, Rosenqvist M, Lip GY. Evaluation of risk stratification schemes for ischaemic stroke and bleeding in 182 678 patients with atrial fibrillation: the Swedish Atrial Fibrillation cohort study. Eur Heart J. 2012 Jun;33(12):1500-10. doi: 10.1093/eurheartj/ehr488. Epub 2012 Jan 13. PubMed PMID: 22246443.=

Research Paper

Okumura K, Inoue H, Atarashi H, Yamashita T, Tomita H, Origasa H; J-RHYTHM Registry Investigators.Validation of CHA₂DS₂-VASc and HAS-BLED scores in Japanese patients with nonvalvular atrial fibrillation: an analysis of the J-RHYTHM Registry. Circ J. 2014;78(7):1593-9. Epub 2014 Apr 22.

OUTCOMES

Research Paper

Camm AJ, Lip GY, De Caterina R, Savelieva I, Atar D, Hohnloser SH, Hindricks G, Kirchhof P; ESC Committee for Practice Guidelines (CPG). 2012 focused update of the ESC Guidelines for the management of atrial fibrillation: an update of the 2010 ESC Guidelines for the management of atrial fibrillation. Developed with the special contribution of the European Heart Rhythm Association. Eur Heart J. 2012 Nov;33(21):2719-47. doi: 10.1093/eurheartj/ehs253. Epub 2012 Aug 24. Erratum in: Eur Heart J. 2013 Mar;34(10):790. Eur Heart J. 2013 Sep;34(36):2850-1. PubMed PMID: 22922413.

CLINICAL PRACTICE GUIDELINES

Research Paper

Hindricks G, Potpara T, Dagres N, et al. 2020 esc guidelines for the diagnosis and management of atrial fibrillation developed in collaboration with the european association for cardio-thoracic surgery (Eacts): the task force for the diagnosis and management of atrial fibrillation of the european society of cardiology (Esc) developed with the special contribution of the european heart rhythm association (Ehra) of the esc. Eur Heart J. 2021;42(5):373-498.

Research Paper

January CT, Wann LS, Calkins H, et al. 2019 aha/acc/hrs focused update of the 2014 aha/acc/hrs guideline for the management of patients with atrial fibrillation: a report of the american college of cardiology/american heart association task force on clinical practice guidelines and the heart rhythm society in collaboration with the society of thoracic surgeons. Circulation. 2019;140(2):e125-e151.

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Rambler398 profile image
Rambler398 in reply to Rocky-athlete

“Incidentally, my mother is 95 and has a high CHA₂DS₂-VASc, high HAS-BLED, and nearly died/nearly had a leg amputated for a massive lower leg hematoma (20 cm long x 7 cm wide x 4 cm protruding) from bumping it on furniture. She is no longer on a DOAC. It is all about carefully considered risk-benefit in consultation with specialists.”

I’m not clear whether you are suggesting she should not have been on a DOAC in the first place?

Is there a case for saying that your mother was protected from having a (potentially fatal) stroke for (possibly?) many years whilst on a DOAC? And that stopping them now removes that protection?

I’m not for a moment suggesting the decision is wrong, obviously that is a matter for your mother and her doctor.

But the situation does highlight the difficulty of making risk/benefit decisions around anticoagulants in AF in the very elderly.

Rocky-athlete profile image
Rocky-athlete

Hi Rambler,

I AM, as you say, "highlight[ing] the difficulty of making risk/benefit decisions around anticoagulants in AF" even in the moderately elderly.

I'm also advocating for working to understand the risks and benefits as well as you can before deciding, then re-evaluating as your health changes and as new evidence comes in. These decisions are not black/white. There are other variables in her case, including but not limited to, borderline kidney failure that slowed clearance of meds, so her serum levels were probably higher. For a while, her cardiologist, EP, and GP agreed to have her on a half dose. (I think, but am not sure, that's what she was on during this incident.) I do not think there are any studies or guidelines that recommend that, but it seemed reasonable at the time.

I am not suggesting these were poor decisions, nor that they did not prevent a stroke.

Thanks for asking polite, clarifying questions.🙂

smwdorset profile image
smwdorset

this sounds extraordinary - I was on anticoagulants for 20 years for PAF before having an ablation starting at age 40

sarniacherie profile image
sarniacherie

I had to read your post twice. I have heard of PIP's for beta-blockers but never an anti-coagulant. Those of us with PAF are at more danger than those in permanent AF. That is because we go in and out of AF more often and the danger point is the conversion pause where the irregular heartbeat reverts back to normal sinus rhythm. Taking an anti-coagulant as an infrequent PIP gives you no protection at all. I would be having a conversation with your medics in the very near future.

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