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A fib and blood thinners

Evaluna profile image
93 Replies

Hi, does everyone who has A Fib get prescribed blood thinners? I was diagnosed with Paroxysmal AFib recently after a 14 day monitor. I could feel the change from my normal ectopics but the longest episode was for 47 seconds. I took edoxiban for a couple of weeks but felt really nervous because of potential side effects so have stopped it as haven't felt any A Fib episodes. Now I have seen posts that say you can have A FIB and pulse rate can feel normal so am not sure what to do. I do get very paranoid about taking drugs so am just on Bisoprolol at mo.Thanks

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Evaluna profile image
Evaluna
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mjames1 profile image
mjames1

Hi, does everyone who has A Fib get prescribed blood thinners?

No. It depends on your risk factor score which is a universally accepted criteria.

However, many ep's, especially in the United States, are also taking into consideration other factors like your afib burden which can be a combination of episode frequency, and episode duration.

Are you saying your longest atrial fibrillation episode was 48 seconds? If so, that's practically subclinical and there is some data that suggests anticoagulants may not be necessary in that case.

If you're not sure on the frequency and duration of your episodes, you should probably have your doctor put you on a 1-2 week Holter monitor and/or get a home ECG device where you can share ECG's with your doctor.

Then you and your doctor can sit down and make a shared medical decision, because each case is different plus your own feelings towards anticoagulant should also enter into the decision.

Jim

Evaluna profile image
Evaluna in reply tomjames1

Thanks mjames1, I am 75 (in couple of days) and female so, despite no other problems, I have a score of 3. Although on the 14 day monitor I had a couple of months ago the longest AF episode was 47 seconds, I have had 3 episodes over the last 6 months that lasted between 5 and 15 minutes that I have been very aware of as I could feel my heart beating very fast and unevenly but now I am wondering (having read other posts) if I could be getting episodes where my pulse feels normal (or just ectopics) when in fact it's AF. I am in the UK and my cardiologist said "it was uncertain whether I had passed the threshold for anti coagulation in terms of the AF" but then decided, in view of my age it might be the best thing so I probably should be taking them!

CDreamer profile image
CDreamer in reply toEvaluna

I would trust your cardiologist - with a score 3 you are well into a higher risk and you may be experiencing AF but be unaware. It is very difficult to give individual assessments and I believe that fear drives our decision making so if you are more scared of clots you will take a/c’s but if you are more scared of bleeds you won’t, I don’t think logic comes into it. All I can say is most severe bleeds can be stopped, most strokes cannot be undone and often leave permanent disability.

My own experience, I had what I thought was a successful ablation in 2014 so after 12 months free of AF, or so I thought and at that time no other risk factors so scored 1 for being female, I came off A/c’s. I had a TIA a few months later which I took as a warning as once you have a TIA you are more likely to have a stroke.

It is of course your choice but please research thoroughly and look at the AFA information on prescribing anticoagulants and why they are important.

Evaluna profile image
Evaluna in reply toCDreamer

That's pretty much what my cardiologist said with regard to bleeds and stroke. Thank you for sharing your experience. I am thinking I will have to go back on them.

ozziebob profile image
ozziebob in reply toCDreamer

"most severe bleeds can be stopped" ... are you including intracranial bleeds in your assertion?

This is certainly my worry re anticoagulants after previous spontaneous (ie. unexplained) chronic bilateral subdural haematomas.

CDreamer profile image
CDreamer in reply toozziebob

If you have a very severe bleed outside of hospital, there is little anyone could do regardless of whether or not you take anticoagulants. Anticoagulants don’t CAUSE severe bleeds, they slow down the clotting process, there are antidotes and procedures which can reverse that process in a crisis situation.

The initial assessment based on the algorithmic HASBLED scoring system or a diagnosed blood disorder will decide whether you personally may have a high risk of bleeds, in which case anticoagulants will not be advised. That would be a clinical decision.

My brother had 2 intercranial bleeds, (caused by alcoholism and falling) both treated with surgery. He recovered and thankfully no longer drinks. Best antidote is to stay strong enough to not fall which is why keeping fit is so important.

Nothing in life is without risk, I worry a lot more about AF induced stroke, I never worry about bleeds. Just my opinion but I believe that a lot of the anxiety around bleeds stems from the initial introduction of DOACs back in the 90’s when the dosage was too high which resulted in some people having bleeds which resulted in huge number of class actions in US. The ads the solicitors put out at that time recruiting people so that they could sue scared everyone, including doctors!

ozziebob profile image
ozziebob in reply toCDreamer

CD,

Thanks for your reply, and the experience you describe certainly allows me to understand better why you have reached your strongly stated opinion.

However, I have no fears based on 90's dosages I knew nothing about. Nor are my fears based on the acute events centred around catastrophic accidents, or falls, or being the victim of a crime of aggression.

No, my fears surround the possibility of a repeat of my chronic unexplained intracranial bleeds. Something that grows/accumulates slowly in the dark, unknown to me, until the growing intracranial pressure produces symptoms such as headaches or partial paralysis or worse.

Living alone, my hopes are that if such a bleed recurs, I am still able to call for assistance before I become totally incapacitated. But I also feel if I was anticoagulated, and as a consequence bled for a longer period of time (whether it naturally ceased or not), the probability of this extra bleeding time and consequent higher intracranial pressure producing more catastrophic brain damage is higher than without anticoagulation.

But I may be completing fooling myself with my amateur thinking.🤔 I have just never had the chance to discuss my situation with anyone medical who might bring more knowledge and experience to the table to help my choice going forward as my AF increases in frequency.

Any suggestions from others on the Forum gratefully received.

Bob

En85 SkyBluePInk47

CDreamer profile image
CDreamer in reply toozziebob

You are in a unique and I am sure is very scary situation in that you have a history of previous bleeds which is should be taken into account before taking anticoagulants. Should I have been in your situation I would also wonder about taking them and asking the question as to whether the risks exceeded the benefits for me because it is all about balance.

I hope I would never say that anticoagulants are for everyone, it should always be a joint decision between doctor and patient.

Take Care.

mjames1 profile image
mjames1 in reply toEvaluna

There's a very big elephant in this room, err thread.

And that is because everyone giving advice has documented atrial fibrillation, and you do not!

I get it you want err on the safe side for now with a score of 3, but the score is only relevant for those with atrial fibrillation.

So if you're not seeing an electrophysiologist (ep) already, now might be the time.

A good EP would put you on a 2 to 3 week ekg monitor to see if they could capture these events and confirm if they're afib or not.

You also should look into getting a ECG event monitor like the Kardia where you can capture events and share the EKG with your doctor for proper analysis.

Personally, I don't think taking anticoagulation now would be my decision in your position, but it's certainly reasonable.

However, to continue anticoagulation indefinitely without confirming, your atrial fibrillation would be unreasonable as I see it --putting yourself at an potentially unnecessary bleed risk.

Jim

Buffafly profile image
Buffafly in reply tomjames1

Evaluna has had a 14 day monitor already and atrial fibrillation has been recorded, also felt for longer periods which presumably was the reason for the monitor. My worry would be that at 75 frequent short bursts of AF are going to join up into persistent AF in which case it would be desirable to be on an anticoagulant already.

Evaluna profile image
Evaluna in reply toBuffafly

You're right, the monitor did pick up a short episode of AF. And my cardiologist thinks it will, in all likelihood, increase in frequency although my heart and BP are fine.

mjames1 profile image
mjames1 in reply toBuffafly

Yes, stand corrected. See my response to Bean Counter.

Jim

bean_counter27 profile image
bean_counter27 in reply tomjames1

Original post states "I was diagnosed with Paroxysmal AFib recently after a 14 day monitor"

mjames1 profile image
mjames1 in reply tobean_counter27

Bean Counter: Original post states "I was diagnosed with Paroxysmal AFib recently after a 14 day monitor"

Thank you. Yes, I stand corrected.

There was afib recorded with the longest episode being 47 seconds, so that makes taking an anticoagulant more reasonable.

But personally. given papers suggesting that subclinical. (very short) afib episodes may not be clot forming....That combined with the fact that all her risk points are either from age or being female, with no other risk factors such as high blood pressure, etc.

All that would make me again lean toward not taking anticoagulation, but I certainly understand why someone might want to.

I still like the idea of further EKG testing, with a Holter and/or home monitoring, under the guidance of an ep as opposed to a regular cardiologist.

Jim

bean_counter27 profile image
bean_counter27 in reply tomjames1

I'd second doing more testing. There's no way of knowing how representative a single 14 day test is of the frequency and duration of infrequent episodes of paroxysmal AF. To not start AC in the belief events are rare and short-lived could be a major mistake.I've had events measured in minutes and others lasting 14 hours. Either could be captured in a 14 day period but neither reflects my "normal" burden.

Besides, AF is almost always a progressive condition. So when and how do you know when AC is warranted?

Alemo27 profile image
Alemo27 in reply tobean_counter27

Absolutely agree!!

I am in Afib for 18 years.was sceptical about Apixaban at the beginning!!

. The onsets became more often that I can mannage only with Antiarrhytmic drug. Being seen about 6 cardiologist and EP , everybody emphasized the importance of anticoagulant, even more with paroxysmal than with persistent AFIB

Evaluna profile image
Evaluna in reply tomjames1

I like the idea of another monitor but won't get it on the NHS so am on the edoxaban as of this morning... will see how it goes.

CDreamer profile image
CDreamer in reply toEvaluna

Hope it goes well for you, take care.

Mollydex profile image
Mollydex in reply tomjames1

I take apixiban amongst other cardiac drugs. I have had an ablation in June this year and no longer feel AF but will know if it persists when I have my pace maker read in Nov. My arrhythmia doc has told me I will need anticoagulants for life. This hasent stopped me being sporty , I go to the gym . Swim and cycle . For some reason running starts my angina so I can’t do that. I’ve retired this year and hope to enjoy quite a few active years. Therefore I always listen too and discuss the consultants risk assessments for all of my drugs. She always tells me the risks of having and the risks of not having the drugs she advises. So yes I take anticoagulants. Have that discussion with your consultant so that you can make an informed choice

Evaluna profile image
Evaluna in reply toMollydex

Thanks. I have started on the edoxaban today.

Mollydex profile image
Mollydex in reply toEvaluna

I’m glad you have made your decision. Our condition makes our life and choices complex. Everything a risk , yet everything a positive. We just have to listen to advice and enjoy life xxx

Tencommandments profile image
Tencommandments in reply tomjames1

I’m on sotalol

Paulbounce profile image
Paulbounce

Hi Eva.

It's possible that you may be experiencing more frequent and longer episodes of Afib than you realise. Age and sex are risk factors for Afib - women over 75 are particularly at risk. Also, a score of 3 shows a chance of a stroke. Afib can come and go and some people are asymptomatic so you may be in Afib at times without knowing it. Continuous monitoring might be a good idea - talk to your cardio about this. Also, note that regular exercise and a healthy diet can help with Afib.

Personally, I would take an anticoagulant if I were in your shoes*** I have a CHAD score of 0 but still take an anticoagulant. A stroke brought on by Afib is no fun, to say the least.

Paul

***Please note I am not a doctor and this is just my personal view. Ultimately it is a decision that can only be made by yourself and your cardio.

Evaluna profile image
Evaluna in reply toPaulbounce

Thanks for your thoughts Paul. I have a very healthy diet, largely vegetarian and no processed food. I have a BMI of 22 and live in a hilly part of the UK - my daily walks of around 4 miles are good cardio workouts. My 14 day monitor did only pick up one event of AF which I was aware of but, you're right, I may have episodes that I don't feel. Getting a continuous monitor on the NHS is not an option. Just wish I wasnt so anxious about taking meds.

Paulbounce profile image
Paulbounce in reply toEvaluna

Hi Eva.

It sounds like you are doing the right things regarding lifestyle. IMO, there is nothing to taking an anticoagulant—you won't even know you are taking them. It's not like some meds that make you feel tired etc.

They are not cheap so it depends on your budget but have a look at the Apple Watch for continuous monitoring.

Paul

Auriculaire profile image
Auriculaire in reply toPaulbounce

Not everybody gets no side effects from DOACs. I hate taking Apixaban and regard it as the pink poison.

Paulbounce profile image
Paulbounce in reply toAuriculaire

Hi Auriculaire.

Sure - some do have side effects but more often than folks don't show any. As a matter of interest what side effects have you had taking Apixaban (if you don't mind sharing). From a personal point of view I haven't had any at all taking DOACs.

Paul

Auriculaire profile image
Auriculaire in reply toPaulbounce

I get digestive problems- feeling bloated, nausea sometimes reflux. Worse it acts as an ampifier of skeletal pain. I know this because I have been taken off once for 10days and my pain improved a lot. Other times when I have been taken off for shorter periods digestive issues have improved immediately. I have also tinkered with the dose . On the half dose I am much better.

Evaluna profile image
Evaluna in reply toAuriculaire

I get those stomach issues occasionally anyway... hope it forest make it worse!

Buffafly profile image
Buffafly in reply toEvaluna

You could have episodes at night too. When I had a monitor I had no episodes of AF (I thought) but the report came back as ‘frequent episodes ‘. When you are so fit it is hard to get your head around taking meds but you could congratulate yourself on only needing two at 75 (btw what’s the bisoprolol for?) Many people your age are rattling with pills!

Evaluna profile image
Evaluna in reply toBuffafly

The bisoprolol is supposed to help prevent AF and my SVTs. It does nothing for my ectopics.Thanks for sharing your experience - I have started taking edoxaban today.

Ennasti profile image
Ennasti in reply toEvaluna

I’m pleased to read you’re back on it. I experience brief episodes of AF too, but none have been detected on my watch or any holter monitors in the past 18 months. These episodes have a low rate, with the fastest being around 82 bpm and slowest about 62, and they last only 30-60 seconds. When I asked my cardiologist if I could stop taking apixaban, he advised against it, noting that since I haven’t had any side effects, and given my progressive conduction issue and the fact that I’m not monitored constantly, it would be safer to stay on it. I’m only 58.

Evaluna profile image
Evaluna in reply toEnnasti

Thanks for your response. Can I ask how you know it's AF? I'm interested because I can tell when mine is very fast and very irregular but not so sure when it's slow.

Ennasti profile image
Ennasti in reply toEvaluna

I’ve used my Kardia and or Watch to record it. Usually I’ve felt ‘odd’ and can feel my heart dancing about but I’m not sure what that dancing is - just something that is not normal. I have so many other things happening that I really can’t pick the difference between most of it and it often changes just as I think I can recognise what it is. The other things are PVCs and PACs (often in runs), tachycardia, bradycardia, NSVT, and a LBBB.

Evaluna profile image
Evaluna in reply toEnnasti

That's even more variety than I have. Good luck to us all.

SkyBluePInk47 profile image
SkyBluePInk47 in reply toEvaluna

Is it extremely expensive to get one by paying privately?

Peacockmumma profile image
Peacockmumma

tricky one…again the Chads score deemed my time had come to take anti coagulation tabs at 65…at 64 I asked why not now..does my body know I’m 65? lol so I would rather be safe than sorry.

I’m paroxysmal..episodes have reduced since being in bP meds…episode can still last about 7 hrs but I don’t notice it much now…and don’t worry about it as much as I used to. I can just fell my heart fluttering and the old watch says I’m at 112 which the highest I go to from resting of average 50s.

EP doesn’t exist in Uk unless private and I’ve been discharged from the hospital after initial diagnosis..so back to dr for me if things change,

Good luck what we you do.

Evaluna profile image
Evaluna in reply toPeacockmumma

Thanks for sharing your experience.

wilsond profile image
wilsond in reply toPeacockmumma

That's not correct to say EPs do not exist in the UK unless private!There are 4 EPs at our local hospital for example all work for the nhs,and also do private practice . There can be longish waiting lists for initial consultation but after that no issue.

Peacockmumma profile image
Peacockmumma in reply towilsond

Interesting. Never heard of any. Never get referred to one ..guess I’m not serious enough to need one so won’t complain

Buffafly profile image
Buffafly in reply toPeacockmumma

You get referred to an EP if your meds are not successfully controlling your AF rate, if you need the meds but can’t tolerate them, or if you ask because you can’t tolerate the AF. I think that’s about it. The idea that early intervention is the way to go is being promoted but not popular yet. The reason people go private is because they want to have an in-depth discussion about their AF and think an EP will be better than a cardiologist, and they want to be sure they are having the best treatment, both asap.

RenegadeRocky profile image
RenegadeRocky

Hello, I hope you’re doing well despite your symptoms. I would definitely recommend taking the medication, it could prevent a stroke occurring and as your condition is Paroxsymal you should arm yourself against the worst case scenario. I don’t mean to sound harsh but if the doctor has prescribed it then I would follow their advice first. Best of luck to you.

Evaluna profile image
Evaluna in reply toRenegadeRocky

Thanks, I'm thinking I'm going to have to take them.

RenegadeRocky profile image
RenegadeRocky in reply toEvaluna

I think that is a good idea. Good luck to you and hopefully you won’t experience any side effects. TBH when I was told in my 40’s that I’d likely be on the meds for the rest of my life I didn’t take it well and I was shocked. 5 years on and I’m still on the meds, fighting the symptoms and learning to live with this. The meds are now the least of my worries.

Evaluna profile image
Evaluna in reply toRenegadeRocky

You are still so young to have to put up with this-I'm of that age where most people are taking something but I wasn't expecting AF! Hope all goes well for you.

RenegadeRocky profile image
RenegadeRocky in reply toEvaluna

Thank you very much and the same to you too! It doesn’t really matter the age, we all feel the same things. Good luck.

BenHall1 profile image
BenHall1

Hi,

Short answer - no! Whether you are or are not depends on a number of factors, none-the-least of which maybe age.

TBH, you seem to refer to a person who is asymptomatic – that is they do not experience / feel any symptoms - ( such as me ) but can well be in AF and not be aware. A very dangerous place to be ‘cos it tends to promote the view ( in many people ) that their AF ‘has gone away ‘ when it hasn’t ! It’s very much alive and well and ready to create all sorts of mischief.

I don’t think any of us like taking meds, I don’t, but I don’t like the consequences of not taking them. Good luck with that ! Your call !

When I was first diagnosed, aged 65 in January 2010 I was put on Bisoprolol and an anticoagulant, Warfarin. I might add that the Consultant at the time did give me an overview of my future options including ablation. I rejected that stating I’d prefer the medication path. I stayed on this ( and other heart meds too – Felodopine and Ramipril ) for some 12 years. I then was switched to Bisoprolol and Edoxaban ( a new anticoagulant ) which gave me horrendous side effects. I did not mince my words with my GP on my feelings about this medication ( and the other NOAC’s that are now in the marketplace ) and she had no choice but to return me to Warfarin. Then she switched me from Bisoprolol to Nebivolol – staying with Warfarin, because the Bisoprolol was now starting to give me unwelcome side effects. I stayed on this combo for 6 months, had another AF event ( the first in 4/5 years ), went and saw another Cardiac Consultant and got moved from Nebivolol to Sotalol and Warfarin. He also tried to get me to leave Warfarin in favour of a NOAC and I refused … explaining my previous problems. No more arguments from him on that. Nice try though !

So back to your final question ….. what do you do. In your position I would go the medication route …. BUT … you admit to being so paranoid then you’ve only got one choice – ablation. But you do need to research this and find out even if you have one, even if it works ( and often peeps need many of them ) are you really gonna be medication free. Some ablations don’t work.

The reason for my rejecting any notion of ablation was that I didn’t want anyone going into my chest and having a BBQ with my heart. For me it was the right choice I’m 80 now and I’ve now accepted the weariness/tiredness as part of my lot – but at least my heart is in tact and not mutilated and I keep scoffin’ my pills. What’s not to like.

Again, good luck.

John

Evaluna profile image
Evaluna in reply toBenHall1

Your comments made me smile, especially about having your heart "barbecued". My cardiologist is thinking that ablation isn't worth the risk for me at moment. He says not to worry about my ectopics, SVTs or even AF as, if I am taking edoxaban that removes the major risk! If I couldn't feel them I wouldn't worry so much! Thanks for your thoughts.

BenHall1 profile image
BenHall1 in reply toEvaluna

Hi again Eva,

Glad you got a 'giggle' about BBQ heart. 😀 I really think I'd be going for the least line of resistence ( as I've already said ) ... meds. The thing is if you take them you will leave a paper trail ... in other words whichever one you take will work or not work for you. This data will be useful - if you ultimately go for ablation - for the consultant you end up with. Not foolproof but useful.

To the best of my knowledge there are 5 anticoagulants in current use here in UK - Warfarin ( the very old reliable one ) and Edoxaban, Apixaban, Dabigatran and Rivaroxaban ( the 4 new ones ). When I was diagnosed back in 2010 these did not exist other than in a laboratory and I don't think they've been around much before 2014, at least here in UK. As I said, for me Edoxaban was a mess - violent, colorful and vile nightmares ........ I wasn't even gonna think about getting on the merry go round and trying the other three when I knew I'd have no problems with Warfarin.

Yes, the Edoxaban does remove a massive risk. But I wonder what sort of beat your heart is up to ............. although my heart rate ( was a worry ) it was not such a big issue as was my heart rhythm and blood pressure and so thats why I'd been put on a range of Betablockers.

Incidently, very wise words from CDreamer in her post. AF and its little family of menaces is, apart from the political class that governs us, is the most untrustworthy thing I can think of .............. if untreated or mistreated, it will always have its wicked way, when it wants and at a time it wants. If you don't have the rate/rhythm issues that I had then I reckon I'd definately try the meds route first.

Whatever you chose I do wish you success.

John

Bridges4 profile image
Bridges4 in reply toBenHall1

Can I have clarification on one point please. I always thought Warfarin was a blood thinner and the rest of the newer meds such as Apixaban were designated as anticoagulants NOT blood thinners. I could be wrong so stand to be corrected

Leslie

BenHall1 profile image
BenHall1 in reply toBridges4

I was always told 'Blood thinner ' was a form of Slang . The correct term for Warfarin and the newer 4 is anticoagulant ! Anticoagulants do not thin blood !! They change the viscosity of the liquid we call blood.

Think engine oils for cars. Viscosity.

Sorry, thats my best attempt at an explanation.

John

Ppiman profile image
Ppiman

Anticoagulants are given according to risk, and that is determined by your so-called Chads2 score.

Out of interest, so far as I can read online, no one is certain why the clots form in AF. Some studies I read showed that they seem to form in a tiny remnant pouch in the atrium called the LAA (left atrial appendage). Some other interesting work showed that there are different shapes and sizes of this pouch, some being prone to clot formation, others not. It was concluded that genetics and inheritance played its part.

I also read some studies which suggested that the clots might form regardless of whether the AF was occurring concurrently, suggesting that anticoagulants should be started and continued permanently after the first AF episode, if the Chads2 score determined the need.

The relevance of this to us is likely nil since doctors do not routinely check the LAA, of course.

Steve

Evaluna profile image
Evaluna in reply toPpiman

Interesting though. Thanks

Cat04 profile image
Cat04 in reply toPpiman

I had a catheter GP ablation which lasted nearly 4 years and more recently a surgical PVI ablation and LAA clip fitted during OHS but as not all clots form in the LAA I have continued to take anticoagulants.

Ppiman profile image
Ppiman in reply toCat04

I would do the same. I have just had a look at the studies I read a while back and see that it seems now accepted that more than 90% of thrombi form in the LAA and that the rarer "cauliflower shaped" ones are what cause the clots to form.

It's marvellous that these aspects are being investigated but the reality for most of us is that a daily DOAC is the safest way.

Did your surgical PVI do the trick?

Steve

Cat04 profile image
Cat04 in reply toPpiman

It was January 2023 and so far so good on the arrhythmias, fingers crossed it stays that way.

Ppiman profile image
Ppiman in reply toCat04

Yes - it’s sounding good! I think that op is the best by far.

Steve

AKatieD profile image
AKatieD

If you are worried you are having AFib episodes without realising it, there are various watches that can check that (maybe other devices too).

I don't think (maybe wrong) that any work continuously day and night, but press a button and they do an ECG, telling you if in AFib or sinus rhythm. They work well enough for cardiologists to recommend.

Evaluna profile image
Evaluna in reply toAKatieD

Thanks, I will look into.

SkyBluePInk47 profile image
SkyBluePInk47 in reply toEvaluna

also Kardia Mobile 6 L

not as convenient as a watch but more accurate, according to my cardiologist.

GoodHearty profile image
GoodHearty

My PAf burden is relatively low thankfully, and was only prescribed bisopralol as PiP (which I have never needed to) but have recruited on a long term study by Nottingham University called DareToThink that is evaluating the benefits of taking DOACs (edoxaban in my case) from age 60 (as opposed to normally 65) in respect of degenerative diseases of the brain (Alzheimer’s, Parkinson’s etc). I have to take cognitive tests every 6 months as part of evidence collection. I don’t usually like taking prescribed medication but apart from some interesting dreams taking edoxaban, no other effects and potentially keeping likelihood of strokes at bay.

Evaluna profile image
Evaluna in reply toGoodHearty

That's good to hear. How long have you been taking it and what dosage?

GoodHearty profile image
GoodHearty in reply toEvaluna

I started on the trial Spring this year and it’s the minimum dose 60mg. I looked up price of edoxaban - eye opener 👀 around £60 for 28 tablets (month supply).

Evaluna profile image
Evaluna in reply toGoodHearty

Wow, that is pricey

Vonnegut profile image
Vonnegut

As I have posted here before, I was told that unless an episode of AF was fast and went on for a long time, I was not at risk of stroke. Why not get a Kardia (another piece of advice he gave me) and then you can see what your heart is up to and take appropriate action. Take it easy.

Evaluna profile image
Evaluna in reply toVonnegut

I did have a Kardia but because episodes tend to be very short by the time I had it on and the app opened the AF had stopped!My AF episodes tho short and infrequent are very fast... too fast to count!

Vonnegut profile image
Vonnegut in reply toEvaluna

But if that short you don’t need to worry about them! Using a Kardia is much easier than attempting to count- now my heart is controlled with Flecainide, I hardly ever use it but when I did need to use it, it hardly took any time to do so.

Drone01 profile image
Drone01

Hi there

I’m one of those who’ve previously decided to discontinue Bisoprolol altogether and not yet started an anticoagulant, despite a higher risk score based on age (I’m male aged 71). I do however take an ACE inhibitor alongside regular exercise to keep blood pressure down and an antiplatelet in the form of 75mg aspirin. I may switch to an anticoagulant when I’m 75 (though the risk scores are at population level so only you can make a personal assessment of stroke risk v. bleeding risk in light of your overall health and activities). The NICE guidelines prevent GPs prescribing antiplatelets rather than anticoagulants to anyone suffering from PAF.

My own very occasional episodes of AF @ 200 bpm last less than 30 mins, and in my view aren’t long enough to promote clot formation in the heart as a result of blood pooling in the atrium. So I continue to take OTC aspirin to help guard against ischaemic clot formation in the small vessels of the brain rather than to stop clot formation in the heart travelling to the brain. Cardiology still recommend anticoagulants, but have no choice but to follow the population level protocols.

Evaluna profile image
Evaluna in reply toDrone01

Hi, Lots of differing opinions - just like the 2 different cardiologist I have seen. Really interesting to read your take. I did ask the cardiologist about anti platelet meds as I had assumed that's what he meant but he said not for PAF that the NOACs are the appropriate medication. I'm not sure that bisoprolol do much for me at all. They don't even slow my heart that much. My resting heart rate without them averages 68 and the same when I'm taking them. And I still can get SVTs!

Macandcheese21 profile image
Macandcheese21

I have AF had it for nearly 14 years, I have been on Edoxaban for about 4 years. It’s unwise to stop it without doctors advice. My AF is worse and have had 12 hour episodes. I wouldn’t stop my edoxaban my cardiologist knows better than me, if she thinks I need it I take it .

Vrouse profile image
Vrouse

I had a stroke caused by AF, which I didn't know I had. ....My advice is that if the cardiologist/EP has prescribed anticoagulants then you take them. I was exceptionally lucky the clot broke up so the effects were minimal. The consultant told me had it not broke up I wouldn't have survived. I've taken Apixaban ever since (5 years) and never had a problem.

Evaluna profile image
Evaluna in reply toVrouse

That's good to know

wilsond profile image
wilsond

Not everybody who has AF is prescribed anti coagulation but those who are would be very unwise in my opinion,not to take them.With a score of 3 it would be really unwise.

What side effects are you worrying about?

Understand your desire to question medication but this is important. X

Evaluna profile image
Evaluna

I guess getting a bleed on the brain or stomach etc. I know my chances of having a stroke are higher than the risk of a bleed. I'm not saying I am rational! I am back on the edoxaban having taken on board what all you lovely people have said.

Paulbounce profile image
Paulbounce

Hi Eva.

A wise move I think. Have a great Sunday.

Paul

Kendalghost profile image
Kendalghost

If you are offered them take them, had a minor stroke and have brain damage and difficulty walking etc. I did not know that I had AF at the time. My husband was diagnosed with AF and wasn't given blood thinners, he has had a TIA and now takes them.

Evaluna profile image
Evaluna in reply toKendalghost

I'm so sorry to hear this. I have started taking them today. I have been persuaded by all you lovely people who have related your experiences. Good luck to you.

BobJohnsonUSA profile image
BobJohnsonUSA

I am no expert, but I did/do have AFib. As I understand it, the primary reason to use blood thinners when you have AFib is increased risk of stroke. The rapid heart beats churn your blood, and makes it more likely to clot and for the clot to get pumped out of the heart and often to the brain. I used/use Eliquis. My AFib got beyond the range Metoperol was able to address. I was supposed to have Oblation surgery in 2020, but due to COVID I did not have it until Fall 2021. It worked great, until I caught COVID in 2022. The documented significantly higher rate of heart issues related to COVID and the COVID Vaccine led my doctor to assert COVID was the cause of the return of irregular heart beat. We are waiting to see if the heart "fixes" itself. Run this by your own doctors before you rely or act upon anything I have written here. Good Luck

AblatedCyclist profile image
AblatedCyclist

I had Afib for maybe 6-9 months without any symptoms. (I have an ICD so I'd get a phone call). It continued to come more frequently and last longer so my EP did an ablation, which seems to have fixed it. But as a precaution he and my other cardiologist convinced me to take Eloquist as a safety precaution. Other than making me pee a bit more often I've had no problems with it at all

RVine3 profile image
RVine3

From my understanding and please forum, correct me if I'm wrong, for AFIB patients the cardiologist looks at your Chad-Vacs score (Stroke risk) and your HAS_BLED Score (Bleeding Risk) to help identify if it is appropriate for patients to be on anticoagulation - Some have a history of bleeding or falling. So which score is higher combined with your own health status etc. is used as an evaluation tool.

SkyBluePInk47 profile image
SkyBluePInk47 in reply toRVine3

seems correct because I was not prescribed an anti-coagulant

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

You need the CHAD test questions as your age, any previoue heart - stroke or mini count, being female, etc.

cheri JOY. 75. (NZ)

Evaluna profile image
Evaluna in reply toJOY2THEWORLD49

I get 3 just because of age and gender!! Thanks

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toEvaluna

Hi

So over 2 you do need a anti-c.agulant.

After stroke in September I took no meds except B12 underv tongue. Gold top. Stroke was caused by Thyroid Cancer and my Sysyolic was high 170ish. So then diagnosed with AF rapid and persistent.

So Thyroid Cancer undiagnosed gave me AF which caused the stroke - Ischaemic Clot type in my Left frontal lobe.

If I had been on PRADAXA I wouldn't have had stroke hopefully but unlnown diseases make more.

They put me on 110mg PRADAXA and I take it twice day with fruit joiuce or eat fruit after.

cheri JOY. 75. (NZ)

Evaluna profile image
Evaluna in reply toJOY2THEWORLD49

So sorry to hear about all those problems. Hope you're recovering well

Brianboru profile image
Brianboru

One of my meds. is Edoxaban for Afib. I have a pacemaker. The only problem I have is feeling colder these days ( blood thinner than it should be ?) The fact that it prevents blood clotting while asleep (due to further reduced heart beat) is worth the nuisance and I have ways of insulating myself!.

Evaluna profile image
Evaluna in reply toBrianboru

Good to hear you don't have any problems with Edoxaban... I felt the cold before I started taking it!!

seafin profile image
seafin in reply toEvaluna

Evaluna - I'm similar to you - diagnosed with AF, no other heart issues.

The only episode I have ever known is one short one in a routine GP visit.

I had a Holter monitor arranged some months later (by a cardiologist) for 2 days (was supposed to be 5 but they messed up) and they found no sign of any AF episodes.

I also have my own Wellue ECG monitor, which can monitor continuously for 24hr, and I don't see any episodes. Sometimes in the analysis there is something that says AF < 1%, which I have always thought was an anomaly, and indeed this happened at the same time as the Holter monitor ( I was wearing both) and as I said, they found nothing, suggesting it might indeed be an anomaly.

I am vegan, apart from the occasional fish, and try to keep fit. I also do not like taking drugs.

When first diagnosed by the GP, I did research on AF and anti-coagulants, and my conclusion was that if there is one drug that seemed worth taking it is this - the benefits relative to risk are large.

This still holds true, and there is no 'but', except if you do exercise like cycling or anything where you can hit your head, there is the worry that the anti-coagulant will cause a brain bleed. I am concerned about cycling and falling.

So I understand @mjames position. At the moment I continue to take the anti-coagulant, but am looking out for new research or trials that might change the situation.

Evaluna profile image
Evaluna in reply toseafin

Thanks for your response. I haven't been on my bike recently but think I will do when ive been on the edoxaban for a while.

Tapanac profile image
Tapanac

I am in persistent afib (look up jeanjeannie she is the same) and when I had occasional af I dreaded each attack, I no longer feel anything in persistent af but it is there

I have been told that apixaban is the best anticoagulant as much kinder to the brain and stomach

As for bleeding, I fell really badly crashing my head on the paving and had a bleed, which was scary as I had had brain tumour surgery only a couple of years before, but the hospital did a reversal of the drug and all was fine

Please just remember if you have a score of 3 it is much better to take an anticoagulant than have a stroke. Please take notice of your EP or cardiologist

All the best… Pat

Evaluna profile image
Evaluna in reply toTapanac

Thanks for the input. I am taking the edoxaban now but I don't think there is a reversal agent for that... have to make sure I don't have any accidents!!

Tapanac profile image
Tapanac in reply toEvaluna

Perhaps do ask for apixaban

Good luck xx

southkorea profile image
southkorea

do take it! You do not want a stroke!’

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