I am not on an anti-coagulant, and was trying to find out what the actual risk of stroke is.
There's another afib forum called afibbers.org whose leaders don't believe that otherwise healthy afibbers need anti-coagulants, and that the 5X stroke risk that is cited really only applies to older people and those with comorbidities, particularly previous stroke, but also heart failure and hypertension. They have analyzed and present a lot of science and readily acknowledge the groups of people who do benefit from anticoagulants. They just don't think all afibbers need the expense and side-effects of anti-coagulants. Those with CHADS scores of 0 or 1 don't have any or much additional stroke risk from afib, they say (though I read elsewhere that retrospectively, CHAD and CHAD2 scores are not very good predictors of stroke) A lot of people on their forum seem to be on anticoagulants though, like people on this forum.
It would be nice to believe that I don't need anticoagulants, probably why I bring this up.
I have AF a long time now in my 70 s. Never took any. In fact my cardiologist at the time said aspirin. I will take that when I am in AF all these meds lead to other issues.
I was first diagnosed with paroxysmal AF in January 2010 aged 65. In a few weeks I turn 78. I am in Cornwall, UK. In the beginning, once my Cardiologist had the diagnosis sorted he put me on Bisoprolol and Warfarin .... Coumadin to you in the States for the treatment of AF ( I was already on other high blood pressure drugs before AF mugged me). Here in UK generally speaking Asprin is not recommended as the means to deal with stroke prevention with AF only formal anticoagulents such as Warfarin or the newer DOAC's. It has questionable effectiveness in reducing the stroke risk for most AF patients.
Of course, you maybe a lucky patient who finds this drug worksd.
Hi, Iwas diagnosed with PAF in June 2013. I was 66 and am convinced it was caused by an incidence of mild carbon monoxide poisoning. I was hopitalised for observation for four days, given a shot of, I oresume warfarin in my stomach every morning, discharged & prescribed Bisoporol & Flecanaide. I was taken off Flecanaide in August same year because, no fluid retention. I'm mega fit for my now 74 years. At the time I asked a cardiologist if he could change from Bisoporol beta blockers to a cal ium channel blocker, as beta blockers stopped me exercising. That was done. Then I saw another cardiologist and asked about having an ablation as I didn't see any reason to be on tablets for the rest of my life, when there was an alternative. So I had a cryo ablation in August 2014 and jave been in regulat sinus rhythm ever since and asked my electrophysiologist at my last appointment in October 2016, if I could stop the Apixaban. He agreed becaise he knew how fir & healthy I was.Just recently I was refered to cardiology by my GP., because I'd experienced a one off issue of a dull ache just below my solarplexus, which at the time I was also having an issue with IBS.The cardiologist sent me for a Radium heart scan, which came back as normal with no blood flow issues with my heart. My cholesterol has always been below 4.6. He then asked me if I wanted to go on statins & Apixaban. I told him I don't mind going on statins, purely precautionary, but not want to go on Apixaban, but told him I will take a 75mg aspirin once a day. He told me aspirin aren't as good as Apixaban & could cause stomach bleeds. Je also told me I had a 25% chance of having either a stroke or heart attack in the next ten years. Well that means I've also got a 75% chance of having neither. Do you have any knowledge as to the efficacy of alternatives to drugs, like garlic pills etc., Any advice greatly appreciated, as I'm new on here.
We are back to the ongoing issue of how do we, as lay people judge what is a sound study. This was always my weakness when learning how to look at studies and apply the criteria which would separate the sheep from the goats with regard to methodology and choice of subjects.
It is both an advantage and disadvantage of the internet that you can always find some study to support the bias we have collected from personal experience.
Bottom line is sadly on an individual basis you'll never know!!
These studies, both for and against anticoagulation, are all about statistics of risk assessment. They are good at predicting population trends and highlighting links. They cannot be forecasters of whether you as an individual would or not benefit so it comes down to personal choice which is always about what you fear.
Having had a minor TIA whilst not on anticoagulants following ablation and 12 months AF free and because I scored 1 for female, following the event, I couldn’t get back on them fast enough so you may guess which way my feelings.
Thankfully we do have a choice and this debate will rumble on, and on…….
Having worked in a nursing home and seen the effect strokes have had on people, I wouldn't take the risk of not taking anticoagulants. Many patients were unable to speak, move or eat - they were fed replacement nutrition through a tube in their stomachs. No, I wont take that risk, to tell you the truth I'd rather die than be left like that.
3 years later and I was singing in a choir as a soprano 3 months later .. only now is speech because of my unco-operative movement of tongue and odd swallowing remain.
Dropsy of my right hand had stopped within a year.
Finger exercises improved fingers at joints. Inflammation quietened.
Didnt alter gait and walking.
Dropped face has finally gone.
Determination
Positive outlook
Exercise
Sleep when I need to - no partner to stop me. My dog reminds me when it is food time.
Apart from pills for thyroid hormones, Control of H/R and Rythmn heart
I am working on my Fatigue.
I have read that if thyroid balance caused AF it could leave me naturally.
Latest is to use PIP for anti.....
cheri JOY
I wouldnt be taking anti.. if I didnt have AF. Which is persistent.
As I was once told, you can always stop anticoagulant but you can't undo a stroke.
Of course no system is perfect and even Prof Greg Lip who invented CHADS2VASC2 admits it is not but it is the best we have at present. Of course with a low or zero score risk is low. That isn't news and anticoagulant is optional until score 2 . As said above, your choice.
Agree totally Bob , my concern personally is that my EP has suggested that if after the blanking period I've not had any AF episodes and an ECG shows no abnormalities he would consider taking me off anticoagulants. I was chadvas score 2 prior to being diagnosed because I'm over 65 and have mild hypertension .
Having seen my dear cousin live a dreadful life after a afib event, he didn't know he had afib and therefore was not medicated. I would not wish the eight years he lingered bedridden and incontinent and not able to speak on anyone.
With a familial afib link and suffering arrhythmias myself I immediately began anticoagulation when I reached a point where it was deemed advisable. It was an easy decision for me. We can only make our own based on our own circumstances and medical needs.
The vast majority of forum members are not medically trained but as you would expect, levels of knowledge and understanding vary enormously. Here in the UK, rightly or wrongly, we tend to have more confidence in the recommendations offered by our medics in the NHS because they tend not to be motivated by commercial considerations in the same way that medics from other countries might. It’s therefore not surprising that few, if any UK members would support or endorse attempts to dissuade anyone from taking prescribed anticoagulants. Equally, there will always be AF patients who are concerned about the bleeding risks associated with anticoagulants and it’s right that they should seek professional advice
As has been said, this debate will rumble on for ever and a day and to be honest, I’m not sure it achieves very much because it will never change minds or cause people to ignore the advice of their Doctors and nor should it. Perhaps any doubters should visit a stroke victims clinic…..
That worries me because my grand father died of a haemorrhage stroke. . I am female and over 65 with lone paroxyl afib and no other health issues. I take apaxiban but often wonder if I am particularly at risk of stroke. Don’t have high blood pressure eitherJane
I actually looked that up don't remember where I found this, but it seems that 87% of strokes are ischemic. Taking anti-coagulants raises your risk of a hemorrhagic stroke by maybe 2 % (not sure exactly). They increase your risk of a bad bleed, like from your gums or a bad fall more than that, and beware of slow bleeds from a head injury too. I've about decided to take apiaxiban, once I get the ok from my lupus doctor later this month. I'm most convinced by the fact that aFib is not always detected, so the statistics understate the risk,
what is the experts have advised you to come off the anticoagulants ? Because my EP has told me my bleed risks are higher than my stroke risks. But because of my research on these forums I’m terrified either way ? You say to trust an expert then say maybe go have a look at stroke ward.
you must heed the advice of your Doctor because they will be aware of your medical history. If the risk of bleeding outweighs the stroke risk then that has to be taken into account…….I agree, not an easy position for you to be in……l
I’m still mourning my old life tbh. Trying to get my head around being in persistent AF and hoping somehow I can get off these medications. I think if I was rich I’d of booked an ablation asap and failing that being somewhat desperate I’d pay for a mini maze !
I see you have an appointment to see an EP so you are on the right track to find out what the best treatment plan will be for you. Generally, for those in persistent AF are offered a cardioversion as this will determine if you can be put into normal rhythm and if so, if you feel better. No one will know how long the CV will last but waiting times in the UK can be quite long for reasons we all know about, but at least it means there is light at the end the tunnel…..good luck with your appointment.
having a CT angiogram on Dec 1st then back to EP also seeing my GP. My plan is to be very very proactive in my approach. Armed with lots of information thanks to people on this forum and my own research. I plan to be the best advocate for my own treatment. I’m young and feel if I let things just go I won’t be able to get ahead. I also need to do this for my mental health. Cheers Flapjack.
I like your post but always feel discussion even when people have strong views on which they've based their decisions, is useful or maybe we just like a good blether and this is a good opportunity.Know quite a few people who ignore the advice of their medics ( most would not admit it in a forum though)
I think you are right Bagrat but most who decide not to follow their doctors advice tend not to try and influence others to do the same because they understand that that would be dangerous. I’m sure that this was not the intention of this post either but unfortunately it’s likely to develop into the type of discussion we have seen many times before which is fine so let’s see how it evolves😉
Having had my health compromised for a long time by taking treatments ( FQ antibiotics and desensitisation jabs) prescribed by my doctors I am very reluctant to take meds of any sort. It is not just lay people who struggle to evaluate studies. Most GPs do not read studies and if they do they read only abstracts and conclusions. Given the overweening power of drug company money on what gets published in medical journals ( ex editors of both the BMJ and the NEJM have said that what is published can no longer be relied upon ) all studies need to be very carefully dissected . There are even studies that in order to get published at all have a different conclusion to what their data actually show . Unfortunately those whose business it is to do this and who the doctors rely upon - the regulatory agencies such as the FDA, EMA , MHRA - are also dependent on pharma money to function at all as they are not fully funded from the public purse. They are also dependent on the data provided by the companies as no independent studies are done by them before authorisation of treatments. Given that most drug companies are actually serial criminals ( evidenced by the enormous fines they have had to pay out for various malpractices- Pfizer is one of the very worst offenders) I struggle to understand why anybody trusts them. Having said that I take my Apixaban ( but not at the prescribed dose - it gives me too many side effects) and hope for the best. It has to be remembered that none of the clinical trials for the DOACs were done using placebo but against Warfarin.
I don’t care what statistics say. I was 55 in extremely good health other than AF BMI of 22 active but not excessively, slightly low if anything blood pressure never smoked in my life and whilst I drank more than enough alcohol when I was younger, I was at recommended limits when I had 3 TIAs. Stroke consultant said I was a stroke waiting to happen. He then prescribed anticoagulants which my GP then didn’t give me as I was under the recommended age. Had to fight for them . Then had next 10 years stroke free. I know what choice I would make again and again and again. X
That's great on your part. Good job. TIAs are a big red flag for stroke in any case.
Here in America, Eliquis (the anti-coagulant I was prescribed) at over $500 a month, is a pretty big deal for me and not much covered by my drug plan, which is also expensive. I guess a Biden policy will allow Medicare to negotiate drug prices next year. Don't know the details.
The drug companies spent about $31 million to influence policy here, so its hard not to believe that they have influenced the policy on anti-coagulants. Also, they sponsor a lot of studies of their medicines that don't differentiate between older sicker people and younger healthier people, which should usually be pretty simple to do, just aFib or PAF, and sometimes CHAD scores.
Apparently (I've learned from afibbbers.org links), 90% of clots in afib come from the left atrial appendage, so if you're had that removed or blocked with a Watchman or other device, your chance of a stroke is 90% reduced. Most of the studies the afibbers.org leaders have cited were done in the Scandinavian countries where, I assume, the fix is not as fixed as it is here.
I will say that I took a master's biochemistry class in college and had to do a scientific study myself, so I may understand them a little better than some. I'd think that learning how specific to be in internet searches would also help some.
I will also say that I'm quite scared of strokes, but the afibbers.org website was a little comforting in that not ALL people with PAF have a 5% stroke risk. I still don't know what my personal stroke risk is. I already have weird things going on in my blood and my cardiologist wants to be sure my clot risk is more than my bleeding risk.
That’s a hefty price for eliquis! I really do hope something changes to make healthcare accessible to all in the US. Hospitals and drug companies seem soooo expensive!
I was only CHAD score 1 but obviously it increases with age and as your health changes so I have had my left appendage clipped instead of continuing with blood thinners. Reduces stroke risk massively as you say but there will always be a remaining risk.
Wow . Terrible price for Eliqius, no wonder you are questioning it! I did read somewhere that they are beginning to think that the shape of the appendage varies in individuals and that this may have some bearing on who does or doesn’t develop clots. The thinking was that this could in the future inform as to who was at highest risk. I thought that sounded logical and promising but I read it a few years ago and have never seen anything since. Either way, I think I must have one of the dodgy ones. I also read in a news item yesterday that people with blood type A may be slightly more likely to have a stroke before 60. In the future , all these things may be taken into account but for now we are stuck with what we have which is very vague.
I will stick with the anticoagulants but everyone has a decision to make I guess. X
It must also be accepted that the purpose of the LAA is not fully understood and that many specialists believe it has an important part to play so should not be hacked out willy nilly.
Interesting as the surgeon said they would remove mine when I go for the valve repair. I did ask whether it did anything of importance and he said not that had been proven.
Anti-coagulants are also expensive in South Africa, but the medical Aid society will pay a fair proportion. We are more fortunate than the Americans, in that the generic for Xarelto is now available and is cheaper, I'm thinking of changing to t. A lot of people just stick with Warfarin as that is very cheap and medical Aid will cover the complete cost.
I'm in the USA. Many are not offered warfarin (due to health insurance payments ) because of the many trips to the Dr to have blood times checked. It would cost too much to do that. So they use the Doac instead. Health insurance here is so unequal in what you can and cannot get. And with the power they have, no matter what Biden says, I don't see much changing.
Strange isn't it - our Medical Aid societies which operate differently from your Medical insurance, have no problem with paying for all the blood tests for Warfarin neither do they have a problem covering all the costs for hospitalisation for any illness and any scans done in hospital, bur if you have a scan out of hospital you have to pay portion of it ! I think there is a financial tie up between the private hospitals, path labs and radiologists and Med Aid Socs. It's a very complex system with different plans !
Yes the USA insurance system is very complex. I should have said MY type of insurance would not pay for warfarin. What insurance will pay for depends on what plan you can afford and where you live. And whether you have good or bad Drs. I have a limited income so insurance I can afford is not the best so much is not covered. It's really a travesty that you are treated differently from someone else who has better insurance. Your life is basically worth the insurance you can afford. Everything here is for profit. You are fortunate to not have to worry if or how you can pay for medical care. Many people here die who shouldn't because they can't afford insurance and can't afford to pay out of pocket. Can't afford medicines they need. USA is supposed to be the greatest country in the world. Then why is this happening. Corruption and greed. Most people who will rail about how great the medical system is here are usually the ones who can afford the better insurance. Like some say-if you got it great, if you don't too bad......
Equally our Medical Aid subscriptions vary, but to get reasonably good cover is expensive. We have government hospitals but they are overflowing and only for those who cannot afford medical Aid. But there are certain chronic conditions called PMBs that Medical Aids must pay for, and arrhythmias are one, but the drugs are limited to those on their formulary
😳 I have Rhesus A Negative blood group. My paternal Grandmother had stroke/s was paralysed, father died at 50 massive strokes, he did have lot of stress and smoked, also his sister at 67, had smoked. Father A positive, mum A negative. Blow me if I didn’t marry an A positive 🙄
I too and scared of strokes and never fail to take my anti-coagulant at the same time with my evening meal. I would rather have a heart attack, either you die or you can recover very well. With a stroke, if you are not lucky enough to die, the chances that you will be permanently disabled are extremely high, and horrific.
Whilst the NHS in the UK has many problems, we can be pretty sure that the medicines that are prescribed for us by the medics are effective, safe and, importantly, cost-effective for the benefit they provide. We have a two independent bodies;-
the MHRA regulates which medicines are safe and authorises them for use in the UK, similar to the FDA in the USA originalText
In addition, we have a separate organisation called NICE that issues guidance on which drugs should be used for each condition and patient circumstance. One of its key criteria are drugs which can be shown to be cost-effective for the NHS. originalText
A Doctor can prescribe any drug authorised by the MHRA BUT any doctor who doesn't follow NICE Guidelines would have a LOT of explaining to do.
This is why I am happy to take Apixaban (Eliquis) and be as confident as possible that it is safe, effective and not being prescribed for commercial reasons.
Of course anyone can access the NICE guidelines for Apixaban
The drugs can have nasty side effects and not always noted. You look at the leaflets inside with the medications, the long lists. I was given a diabetic medication at a level of 10mg told drs gave 25mg. My dose was increased from 10mg to 25mg after a month, started having side effects, looked on web and found on Nice it ‘may’ be increased to 25mg! So asked pharmacist who had no answer as to why drs increase the dose to 25mg🤷🏼♀️
Sounds as though people on your forum may be being prescribed anticoagulants before they need them if they are arguing about a risk of 0 or 1, as previously mentioned 2 is tipping point.
I am not on an anti-coagulant and I would also like to know what the stroke risk is for someone similar to me!
I doubt I will ever find out. I am certainly not holding my breath on some convincing data being published, even just split into very broad categories of patients. I suspect the only large studies have been or will be done by Big Pharma and I can't see them releasing anything other than that which supports taking ACs.....so not that helpful.
What are we left with.....the regular two sided debates on this Forum and elsewhere I believe do help members. Whatever the issue, such debates are surely to be encouraged rather than shut down.
Personally, I don't think the decision in favour of ACs is as clear cut as the majority of members here suggest. I think the responsible action we all need to take is to consider our individual circumstances on an annual basis. I believe these present a more reliable decision basis than any available studies.
To end on a positive note, in this age of mandates, censorship and shortages, I am grateful we still have a discussion, a choice and that the pills are available if chosen !!
I was diagnosed at 54 with P/A/F, no other health problems, my cardio did not want to put me of Warfarin as I was too young, or so she said, instead I took 375mg of Soluable Asprin a day, approx. one year later I had a stroke and was then put on Warfarin. As a consequence of the stroke I was retired from my profession on the grounds of ill health and never worked again. I am now 78, have had one ablation a few years ago and as a result of that now wear a Pacemaker, I am also taking two heart drugs which I have reduced in strength over the past two years and after a series of TIA's now take a statin too. The one main problem I have these days is persistent dizziness which is being investigated, personally wondering if it is drug related as have had eyes, ears tested, all good, and awaiting a Neurology appointment in a couple of weeks but the A/F has been fairly 'quiet' since the pacemaker was fitted. I still take an anticoagulant, Pradaxa, due to having the stroke over 20 years ago, had I been given anticoagulant at time of diagnosis I don't think I would have had a stroke and life would have taken a different turn so I would advocate an anticoagulant for those suffering from A/F.
Ten years ago my extremely fit sister aged 75 at the time, was admitted to her local NHS hospital for a gall stone operation, She did not have the op as they said they could not slow down her heart rate, She was discharged with a packet of Aspirins and a diagnosis of AF, ( it is familial, my whole family has it) A short while later she had a stroke, but no gall stone op ! a few months later she became jaundiced, a stone from her gall bladder had migrated into a biliary duct - it became cancerous and she died. The opinion of a specialist in gall bladders ,is, that if she had had the op she would probably still be alive (my eldest sister is 90) and my mother and her 8 siblings and her mother died when they were 95 or more.
HiWell you are the first person that I know of taking PRADAXA.
I hope it is 110mg x twice day dose.
The latest is to take the least amount of anti..
Another medical research USA say don't take statins over the age of 75. Never proven after that age.
The least meds the better I say but I am taking Thyroxin (Ca Thyroidectomy), Heart Diltiazem 120mg am. and Bisoprolol 2.5 pm for AF, Control of rapid, persistent day H/R.
That's me and take 10mg statin when chlorestol gets too high.
I was a gym bunny with a long history of running up to 50 miles a week, cycling to work, yoga, Pilates and Spin classes. I had a high heart rate during exercise so I saw an EP who told me that my heart rate was due to being fit and I didn't need anticoagulants. Eighteen months later in 2016, I had a stroke at the back of my head in the area that processes vision. It wiped out my visual memory of places and, I couldn't find the bathroom in the bungalow where we had lived for 28 years. I also had right side hemianopia - loss of part of the peripheral vision - that meant that my clean licence of 50 years was and remains revoked. I lost my sense of smell and I can't work beyond two hours on mentally demanding tasks.
I'm writing as an individual and other people's experiences may be different. I am lucky that it wasn't worse - I'm not paralysed - and, I value being in studies for specialist medical professionals and academics. However, I wish the EP had prescribed an anticoagulant. I wish you good health and luck if you don't take an anticoagulant; if the worse happens, I can post some links on stroke related matters and groups.
Obviously you can make your own choices, but as someone who had AF since 1995 and took just aspirin as an anticoagulant, I really wish I had known about or had been advised by just one of my doctors over the years, to take something like the Apixaban I now take. That is after a stroke two years ago, out of the blue, and in someone who was enjoying a very healthy lifestyle with no other obvious problems. As a fit and active 74 year old walking, gardening and working on strenuous DIY every day, and with AF under control, I really thought I was at zero risk.
Strokes completely mess up your life and everything now is a struggle. Don't gamble that everything will be ok for you, and weigh up the relative risks of taking one of the new anticoagulants versus the risk of what a stroke may do to you. Remember there is NO such thing as a 'minor' stroke, even if you don't end up with any severe physical disability.
I find it interesting that it was 2007 before anybody mentioned the link between AF and stroke to me despite having had AF for three years by then. It was a presentation given by two arrhythmia nurses who were explaining their rapid access AF system in Bradford where it was aimed to get all newly diagnosed AF patients investigated and put on anticoagulants in double quick time. My gob was well and truly smacked when the link was explained.
When AF Association was formed later that year one of the aims was to increase awareness of both AF and stroke because it was known that if all at risk patients were anticoagulated UK could prevent 8000 strokes a year. It was also stated that UK had one of the worst records for having at risk patients anticoagaulated in Europe.
Remember also that because the clots form in the luxuriously open spaces of the heart they are larger and cause more damage than any formed in arteries and that whilst 20% of all strokes are AF related those account for 80% of the least recoverable ones .
My experience tends to confirm what you say as nobody in the UK suggested anything more than aspirin in the eight years between my diagnosis for AF (despite being in hospital for 4 or 5 days) and my arrival in France in 2003. Even more puzzling, is that in nearly 20 years in France, no doctor suggested anticoagulants neither the 'GP' nor a cardiologist whom I consulted before a hernia operation. The GP used to note that my heart was not in sinus rhythm but said nothing. To be honest, I might well have rejected something like Apixaban unless it had been clearly explained to me, as the notes on these drugs are so full of warnings of potential side effects it is a very alarming. But the possibility of a stroke should be far more alarming! When I saw my first local doctor after the stroke, having changed from my regular doctor, the new one expressed incredulity that nobody had put me on an effective anticoagulant before; aspirin is now known to be very limited in its effectiveness.
HiI had a stroke in 2019 with AF diagnosed. 4 days later diagnosed with Papillary Thyroid cancer when a Carotid Scan was done. No deposits in Carotid arteries.
Whangarei Stroke Ward prescribed 110mg twice day PRADAXA. But transferred for w.end to Kaitaia closer to home but further north from home. Never saw a doctor. But discharged on 150mg Pradaxa x twice daily. Side effects natural teeth and sore eating crunchy cracker biscuits etc. Also had tiny hard rash non itchy not sure what is causing this.
Could be thyroxin tablets daily.
I read medical report that anti-co-agulants should be kept to minimum so if episodes of AF occur to take yr anti... PIP. It was with RADCLIFFE MEDICAL RESEARCH CENTRE UK.
The anti .. is in case a blood clot forms due to irregular heart beat only.
Why are you not having anti.... NOT HAVING AF episodes.
My infarction was caused by thyroid cancer problem hyper or hypo causing AF. The embollism was seen on CT scan as left frontal lobe clot. I awoke at 2am with a massive headache.
I guess what we all should consider is both risks together - stroke and bleed.
For example I consider my circumstances suggest a lower stroke risk and a higher bleed risk, so I am not taking ACs currently. I guess there are more clearcut situations where the high bleed risk outweighs a patient's concerns about the stroke risk.
Thank you for this information. Anticoagulants give me a lot of gyp due to my bleeding disorder (ie 45 min nosebleed one evening followed by 90 mins the next morning!) and as my Chad score is 1 I think they cause me more harm than they solve. This is very helpful x
What no one mentioned here are natural blood thinners. I think you are worried about taking big pharma pills but there are natural alternatives and yes ofcourse they have not officially been peer reviewed but why would they? No money in it. Look up Serrapeptase and research the benefits of Garlic & Tumeric.
The problem with "natural blood thinners" is knowing whether they are anticoagulants or anti aggregants. The latter are like aspirin which is a very good anti aggregant (ie stops platelet clumping) but would like aspirin not be useful for afibbers. Most of the well known natural blood thinners are in fact anti aggregants and cannot be relied upon. Which is Serrapeptase?
So the question is how frequent do you have to be in Afib to justify anticoagulants? Once a year? Twice? And for how long? A few hours or over 24 hours?
I don't think you can know for sure. I had had 5/6 episodes between Oct 2014 and March 2019 when I went on Apixaban. This was after a very mild TIA which occurred 6 months after the previous episode. My episodes last between 8 and 12 hours normally. My cardiologist had not thought I needed an anticoagulant despite a CHADSVASC score of 2 for being female and for age . Once the TIA put the score up to 3 he and my GP said it was needed. My episodes are more frequent since the beginning of 2020. However I do not take the full dose of Apixaban as it gives me unacceptable side effects. I take a small dose of nattokinase as well . I have to balance the certainty of living with side effects that seriously impinge upon my QOL and the possibility of a stroke that might never happen. I have chosen to do something that is not recommended but I feel is right for me.
I was diagnosed with AF 14 years ago in my mid 30s & am not taking an anti-coagulant. A stroke is everyone’s worst nightmare but at the end of the day statistics have to matter for any rational decision on medication to be made. My husband (not an AF sufferer) had a stroke at the age of 41 whilst training for the London marathon. He is ex-army & was seemingly very fit & healthy at the time. He had a couple of difficult years following the stroke but is now ok & largely back to normal. His story is enough to send other fit, healthy 41 year olds running for the clopidogrel & aspirin lest the same thing happen to them. Statistics tell us this would be foolish. Anti-platelets or anti-coagulants are life-saving but neither are without risk or side-effects. A personal story of a stroke whilst not taking an anti-coagulant or one of a relative dying from a haemorrhaging stroke due to taking an ant-coagulant are, at the end of the day, just as my message is, anecdotal. Having said all this - I will likely board the ‘anti-coagulation for life’ train soon & despite all the hype about the newer drugs, I will likely try warfarin first. Both my parents have been on it for years.
Why would I rely on untried alternative substances? I had a family member who was a life long naturopath, put me off simple untried solutions, her own health and that of her boyfriend damaged. She was crushed at the end by the knowledge that she didn’t have the answers and than her cancer was aggravated by her self medication.
I trust my young EP and the fast track of AF in my local service in a big teaching hospital. He explained his understanding of the research and why (although up to me) on balance I should stay on Apixaban after the successful ablation despite no episodes.
We are fast losing the NHS but currently I think the advice is as good as it can be, my EP doesn’t financially gain, and my AC is free, local pharmacy pops it regularly through my letter box (free), my GP takes blood tests to monitor my reaction to it (free), GP in house pharmacist asks me to be weighed and double checks dosage (free).
I don’t like taking it, fear a bleed, reduced the painkillers I can take, but I don’t like many aspects of how my body is, I have to suck it up. Catch myself up as the Irish say!
If anybody chooses to minimise their risk of stroke on untested, un-trialled so called natural substances then that’s entirely up to them but to advocate and encourage others to use them instead of prescribed medication is, in my opinion, wrong. However, I respect the rights of anyone who chooses to disagree.
Of course the risks associated with bleeding are a concern for many and it’s absolutely right that they should weigh up the risks between bleeding and a stroke but unfortunately, many do not fully understand the real situation as we are told by medics who are experts in their field. I am not medically trained and I am not advocating anything but as I understand it, anticoagulants do not cause spontaneous bleeding. However, if someone experiences a serious trauma, especially to the head, this can cause an internal bleed which can have serious consequences for anybody who takes an anticoagulant. Apparently, since the advent of DOACs, there is some evidence that death caused by bleeding has reduced and this is largely because patients who take them are not vulnerable to the problems caused by fluctuations in INR. The view which I have heard many times is that generally, for AF patients who do not have a history of bleeding themselves or with a close family member, the risk of having a serious stroke far outweighs the risk of bleeding. Of course this does not apply to people who continue to engage in contact sports, motor racing etc, etc. Most of us who take anticoagulants, especially DOAC’s and when warfarin is in range, know that normal domestic cuts and scrapes are rarely a problem. Perhaps this is the reason why the majority are happy to stick with their anticoagulants rather than face the problems associated with a life changing stroke.
I totally sympathise with members who have to bear the extortionate costs associated with their anticoagulants but that is a political issue rather than an argument for not taking prescribed medication but at least no one has raised the question of taking their anticoagulant as a PiP……yet! 😱
An ablation seems to have sorted my AFib (1 year on, 3rd short triathlon of the summer this Sunday). I am still on anti coagulant - Drs said it’s optional. I have no side effects. I could never understand why my Chads was 1 (for age) yet I was advised Stroke Risk was x5. They should revise Chads to include arrhythmia history?
I cannot take anticoagulants. But because of my afib and drs concerns for stroke, I have the Watchman Device implanted. A very simple implant that prevents the cause of stroke from afib. It has been wonderful to not have to worry about a bleed from anticoagulants nor an increased Stroke risk from Afib.
I had a stroke 3 years ago caused by A Fib which I didn't know I had. I was 62 with no known health problems. I take Apixaban twice daily but even if I had to take it 10 times a day I would rather that than suffer a stroke....
I also sometimes question theses statistical analyses that over time become "gospel truth". BUT, I still take my anticoagulant (Xarelto) faithfully, every day. For me, it's side effect free, and I consider it to be my most important medication.
On the "flip side" of the 5X statistic you quote-As PAF an be very intermittent, many are never diagnosed accurately with afib, so I think there's a very large pool of folks out there that have PAF and don't even know it. How many strokes are there (reported as "non-afib induced"), are IN FACT the result of undiagnosed afib? With that in mind, the 5X statistic could, in fact be much higher, due to the difficulty in diagnosing PAF.
This study compares PAF and AF, whether or not on anti-coagulants, and considers age, hypertension, Cardio disease and prior stroke in a big cohort of patients in Japan.
Anti-coagulants were (statistically) somewhat beneficial for PAF, more beneficial for AF. Age was the major risk factor for stroke, followed by previous stroke or TIA. This study mentions that an unknown number of people with PAF were not diagnosed with PAF, which could increase the real-world stroke risk for PAF (and reduce the difference)
Thank you for this article! I think the statement >>This study mentions that an unknown number of people with PAF were not diagnosed with PAF, which could increase the real-world stroke risk for PAF (and reduce the difference)<< is pretty much what I said in my initial post/reply.
Whatever you want to believe you can find on the internet to be factual scientific evidence validating that belief. Hell, why believe your Doctor who probably doesn’t treat you based on what you might find on the internet. Why even go to a doctor if you intend to diagnose and treat yourself? If you look hard enough surely you can find that you don’t have AFIB to begin with?
My CHAD score was zero and went to 1 when turning 65. My afib was persistent for years. Several Cardiologist pushed anticoagulants, a couple said I didn't need it. I stayed on Metoprolo and an aspirin.
A Harvard Med (Boston) Cardiologist tried to make the case, he said I had a 4% stroke risk and a anticoagulant would lower it to just under 2%. I stayed on aspirin.
Last year at age 70 I started Eliquis, it was required before my cardioversion and subsequent successful ablation.
It has been a year since I started Eliquis, I do not notice it. I plan to stay on it. I don't bruise or bleed. The $168 a month (medicare part D) hurts a little. A 2X risk reduction is worth it.
A large study showed a 40% risk reduction from death.
A generic Eliquis was due out last year, the patent was extended a couple of years. Generics are approved and will hit the market one of these years....
How bad is your Afib? You said persistent for years. Curious as to how many? Did the Afib get worse over time? Were you told it would be harder to correct having waited for so long.I too am in persistent Afib but totally asymptomatic without any meds at all (just Eliquis), but i'm being told by every professional (specialists) i ask that it will get worse and hard to treat when it gets worse and that it will (no one can say if or how long that will take) if i don't look after it now. Just don't like someone messing with my heart if it's not an absolute! I only have one of those!
My mother had persistent AF for 28 years. She, similarly, was symptomless & just took warfarin & an occasional beta blocker. She never developed heart failure & her AF never got any worse.
So never any treatments Cardioversion, Ablation? Interesting to me as that is not what the doc's are telling me. i don't like anyone messing with my heart if not absolutely necessary. Pretty sure i don't need 28 years but a good 20 would be nice ha!
She had 2 cardioversions. First lasted 18 months, 2nd 7 & when they offered her a 3rd she said no thank you I’ll just live with it. That was back in about 1990 so ablation wasn’t an option. It really didn’t interfere with her life at all as she had no symptoms. Sadly breast cancer got her 4 years ago at the age of 80. Are you in the US?
My dr said I no longer need blood thinners. I replied I am more afraid of stroke than death and since I have no ill effects from medication? I'd prefer to continue taking it....which I do.
This is such a controversial issue. There are numerous competing studies and more recently studies that suggest anti-coagulants can be used as pill in the pocket by some people. That is the approach that I take. What is clear to my thinking is AFIB can cause blood clots in the heart. That seems pretty much indisputable. Blood clots can cause strokes. However, I always know when I am in AFIB, and I wear a smart watch and use a kardia monitor. If I go into AFIB, and fortunately for me right now it happens infrequently, I immediately take a blood thinner and continue taking it for a week or so. (My AFIB is controlled by 25mg of metoprolol a day) If I were having frequent episodes, I might take it routinely. I think it is a very individual matter. Best of luck sorting it out for yourself.
I was advised by my EP to do as exactly as you... use the anticoagulant as a PIP, and use my kardia monitor everyday. I also always know when I am in afib. But haven't been (fingers crossed) since my ablation.
Trouble is with statistics/theories, they can be worded to suit whomever is producing them. Theoretically, an elephant could hang off a cliff with its tail wrapped around a daisy but reality is a different matter.Only you can decide whether you want to risk the stroke or not.
I agree it’s an individual’s choice, but don’t understand why one wouldn’t follow the advice of a group of experts who have studied the risks and benefits and don’t have a vested interest in a specific answer?
You're absolutely right there. However, I suppose its which group of experts advice you choose to follow. I chose to follow the experts at the hospital, whose care I'm under as they have a vested interest in getting me well again and protecting me from a stroke in the meantime.That's my take but respect it may not be that of everyone.
I didn't take them after first diagnosed with Afib and thought I could take Natto-Serrapeptase, aspirin, etc. to thin my blood. Didn't work, I wound up having 2 mini strokes which lasted like 10 seconds and I dismissed them as nothing and then a couple months later had an actual stroke where I lost control of my left arm,speech and vision for about 20 seconds. Scared the hell out of me. Ask me if I'm on eliquis now? You better believe it.
I didn't honestly believe that I needed to have an ablation- I am on Eliquis and have hypertension well under control, plus no cholesterol issues. A precautionary cardiac
cath showed no appreciable blockage. I diligently exercise and (mostly) eat right. I was diagnosed with paroxymal afib about a year and a half ago but episodes are rare. After
much thought, I went ahead with the ablation because I believed that the scientists (docs) are trained and I am not. I compared myself with Covid 19 vaccine resistes and figured that I should follow my doc's advice. Had the ablation about a month ago and am doing well-so far! I figure if I have a stroke, I have done my part in trying to prevent one. That was my thought process, for what it is worth.
I'm 4 months post ablation, have my follow-up within the next 2 weeks and I too have never been prescribed anti-coagulants.
My thoughts were they would only recommend / prescribe if needed?
I've only ever been prescribed Bisoprolol, a very low dose and didn't last long on it. Felt awful on it & it was like it slowed me down too much. Sluggishness and brain fog. Affected everything I did. TBH my body doesnt react very well to any medication I've been prescribed.
I am otherwise healthy, just in the process of working my way back to fitness.
I'll ask the question when I see my consultantant, be interesting to see what he says.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Explaining stroke risk from CHADsVASC score
Update on bleeding on anti coagulants
Periprocedural stroke risk in patients undergoing catheter ablation for atrial fibrillation
5 times larger stroke risk
