I was diagnosed with PAF over two years ago following two episodes of fast AF which lasted for less than six hours. I was given IV Metoprolol in A&E and discharged on Bisoprolol 1.25mg daily.
I have been well and active since but my cardiologist is keen for me to take anticoagulants as my CHADsVASc score is 3 - being a woman, over 70 and with a history of hypertension.
Given that I have not had an attack for nearly a year and that a recent 7 day holter monitor did not demonstrate any arrhythmias, I am extremely reluctant to add yet more medication on top of what I already take.
Any advice would be much appreciated - I really feel torn between NICE guidance and how I'm feeling!
Sheila
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anxiousgran
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Seriously? With a score of 3 I would be begging for anticoagulation . It really should be a no brainer gran even if like some you discount the +1 for being female.
It has been said before but it may not be AF that brings the stroke risk but the company it keeps and of course many people are quite unaware that they have AF events especially if whilst sleeping. Please don't find out that you do when you are struck down by that stroke.
Gosh. I would be demanding an anticoagulant.I probably had Afib for years without being aware of it. Then had a TIA and was told in no uncertain terms of the risk of a full blown stroke. Listen to your cardiologist and take anticoagulants.
I have been on anticoagulants for many years and don’t give it a second thought apart from knowing it is known to significantly reduce the risk of stroke for those of us who have experiences AF.
i have a score of 3 and if I wasnt on an anticoagulant I would be knocking my doctors door down demanding it. I have been on one for the last ten years and no bad effects.
I understand how you feel but having worked with people who have had strokes - I'm far too afraid of how awful the results of one could be. Can't walk, speak, eat (fed through a tube in the stomach), wearing incontinence pads. Looking out on a world they can't communicate with. Strokes are more common in we seniors. I'd recommend you play safe and take them, but the decision has to be yours.
Jean
I don't believe I have just read what you said. It's a no brainer ..... better instruct your family as to your wishes if a stroke leaves you mentally incapacitated and unable to communicate !
Replies are quite blunt but I agree. I HATE being on Eliquis as the antidote, Andexxa, is not easily available should I have an accident causing bleeding. Fear I would bleed out and die. But a stroke that would leave me incapacitated is even more terrifying. So I put up with Eliquis. Ultimately, the risk/reward calculation is an individual matter. Good luck.
I don't. I've always thought supportive care in the form of plasma or artificial plasma substitutes, then blood or packed cells once available, would keep me going if I was going to survive till more targetted measures available.
As BobD says it is 'the company it keeps' & 'many people are quite unaware' are in my mind the biggest issues.
If your AF has always been symptomatic, stays away and you consider you have no comorbidities (CHADS score, hypertension, inflammation??) then ACs may still be important but less so.
Also, often overlooked in this recurring debate is your propensity to bleed eg I have a weakness in the stomach (found when taking aspirin), seem to bruise easily, eyes bloodshot from time to time and active on my smallholding resulting in banging my head occasionally.
My AF is in remission and at 69 I am postponing ACs whilst helping the body (not as effective as an AC) with daily fresh garlic, Krill oil, plenty of water and x2 daily brisk walks. I also have made numerous lifestyle changes to combat inflammation and other potential issues.
All that said, going on only the very brief information provided, I think it likely that ACs win the day.
Again for the 100th time, if you have EVER had AF you need an anticoagulent for preventive measures. That is unless you like playing Russian Roulette with the bullet being a blood clot and having a stroke if you lose.
I came off anticoagulants after no episodes for about 18 months following successful ablation in my late 50’s. I suffered a TIA 8 months later. Whilst I sympathise about needing to take pharmaceuticals, there are some you may be able to ditch and some it’s really better not to and your anticoagulant is top of the list to keep, unless there is a very good medical reason to stop, usually a bleeding disorder.
Risk:Benefit - your stroke risk is high and will increase with every year that passes. But of course it is your body, your choice.
You have a unanimous consensus of opinion here, not always the case on this forum. That should tell you something.
it would be good to know if there is any data around of what the risks, percentage wise of stroke not taking AC vs taking them. Also I’ve read that both Beta Blockers and AC have a stroke risk as well. BTW im on AC and BB whilst waiting for Cardioversion
AF inceases stroke risk by five times . It is generally accepted that anticoagulation reduces that stroke risk by around 70%. By the way that risk is per annum so increases every year.
I think I’m confusing myself with all my reading, I’d read something that said if you have a Chad score of 0 or 1 you only had an additional 2-3% chance of a stroke compared to one that was on AC. It went on to mention that there is also a chance of stroke from bleeds from taking AC and also a risk from BB. I think those percentages were well below 1% for those Meds.
I guess I’ll ask the Cardiologist when I next visit
there is a lot to consider and everyone is different. I have blood vessels that break and bleed in my hands which my mother also had an issue with and she ended up with a brain bleed stroke. So taking an AC can be scary for some of us. Some of us are highly sensitive to any chemicals in our bodies. It’s not always an easy decision.
thanks Peacefulness it is difficult going through all the info and then weighing up against your own circumstances. I’ve had PAF for about 30 years roughly every 4-5 years. I’m wanting to believe my diet has helped with AC but I guess things can change especially as I’m approaching 65
AF makes us five times more likely to have a stroke PER ANNUM. So after four years you are twenty times more likely. The CHADSVASC score adds to those figures and generally with a score of 0 no anticoagulation is needed --- unless for example you are awaiting an ablation , cardioversion or similar. At 1 it is optional . At 2 it is advised and at 3 you better have a good excuse.
HASBLED which is the bleed risk tool is not a contra to CHADSVASC but a tool for things to address before giving anticoagulation. In other words it does not work against CHADSVASC but guides treatment for those matters. Hope that helps quel your worries.
Now I'm confused as well. Wasn't a link given here a short while back that revealed that the figure of 5% subsequently and repeatedly quoted was based on a trial of patients with persistent(?) AF AND comorbidities, not just AF or lone AF?
Please could the member who gave that link to the original research please post it again so I can finally take note.
I think the member who posted that has unfortunately left the forum but I did save that particular thread as I thought it very interesting. Here’s her original post showing where the study quoting the 5x the risk figure can be found and her thoughts on it:
“This study is the source of the "x5 risk for stroke in AFibbers" figure regularly quoted by all and sundry and can be found here:Wolf PA, Dawber TR, Thomas HE, Jr, Kannel WB. Epidemiologic assessment of chronic atrial fibrillation and risk of stroke: the Framingham study. Neurology. 1978;28:973–7. [PubMed] [Google Scholar]On first glance I could see that the study compared people with AFib and RHD (rheumatic heart disease) with people with AFib and no RHD, the conclusion being that there is a x17 risk of stroke in the former and a x5 risk in the latter.HOWEVER (drum roll....) this evening I took some time to read through the Wolf study more fully than my original quick scan....and imagine my surprise when I discovered the following:"We excluded subjects with stroke prior to the onset of AF. Persons found to be in AF for the first time when hospitalized for stroke were excluded, as were those with known paroxysmal fibrillation. In order to provide a clear and prospective picture of the development of stroke in AF, we included only subjects who were fibrillating on biennial examination."This means that people with paroxysmal AFib weren't even included in this particular study and that all subjects had persistent AFib!I'm staggered that this figure (of x5 risk) is applied so indiscriminately……..”
My own take is that it seems extraordinary to me that the result of one study have become fact that is never questioned, or if it is, such questioning seems to generate a very strong negative response from sections of the community. Anyway, I hope that helps.
Thanks ever so much for reposting that quote. I will find time to read the whole report when I can, but you seem to have quoted the most relevant part. And wasn't that report written a long time ago (will check later), so quoting it's results today to support anticoagulation seems to be misguided. And not so much "quoting" it as pointing vaguely in its direction.
There must be recent research that is specifically directed to calculating stroke risks for different cohorts of AF sufferers, and is welcome by me if posted here on the Forum.
I think it was Helen1956 you quoted, who left the Forum suddenly not long ago. This was a great disappointment to me, as she was interested in understanding both the real stroke risks faced by individual patients, and the risks associated with taking anticoagulants, given all the new insight gathered since that original potentially "misleading" research. I can only imagine she got fed up with the "kickback" she received for her concerns, but I may be wrong in that.
I can only hope your Reply will be noticed by others who will then be able to read the research themselves and understand better the cohort used in producing those results.
Not the original cat lady, alas, just a mad old bat living with a bunch of cats and a dodgy ticker😂
I completely agree with your comments regarding Helen 1956, it is a great shame that she left, who knows why.
The thing that always puzzles me with the oft quoted 5x stroke risk is that we’re also told there are countless millions running around with undiagnosed AF. If, as Bobd says, the 5x risk is a per annum figure, then surely there should be huge numbers dropping like flies with strokes and, as far as I’m aware, that’s not the case.
Anyway, I don’t know if this will be of help to you but I have been reading Hans Larsen’s book “Thrombosis and Stroke Prevention” 3rd edition. It is proving to be a very interesting read , I must say and definitely worth a look, in my view.
Re your Larsen recommendation, I did see him mentioned a few days ago on the Forum (was it you?) and rushed to online book sites trying to find a cheap copy, but no luck. And no luck either with his "Lone Atrial ..." title.
I have them in mind going forward. Perhaps if I get a fuller appraisal of the book when you have finished, by PM (?), then I will break the bank and buy a copy.
I’m not sure how you come to that conclusion, Bob, unless you’re referring to the cohort who also had rheumatic heart disease? In any event, I certainly don’t think anyone is questioning your decision, nor anyone else’s come to that. It’s more a question of wanting to understand where such an oft quoted figure comes from. As you have said in the past, information is power😊
I forgot to add, referring to the 1978 study mentioned above, my AF started a few years after I had unexplained chronic bilateral subdural haematomas, and if that counts as a stroke, my cohort was excluded from that original study. And I am excluded again because I suffer lone AF (or perhaps paroxysmal). So doubly excluded.
No wonder I am still trying to better understand the individual risks I carry re AF, strokes, and anticoagulation medications, plus of course unexplained brain bleeds.
Okay, Bob, you have been around this forum for years. I read one from you this morning from 6 years ago. Why is it generally accepted that AC reduces stroke risk by 70%? That is a huge number and virtually eliminates stroke risk. Please show me the studies that support that.
You will have to accept what the charity tells us there but it may have been the Framington study some years ago. (look that up )
I don't see 70% reduction as unrealistic to be honest . Things are so much better in terms of stroke prevention than they were. It was only around 2007 that I even knew that AF caused so many strokes and the availablity of alternatives to my own favourite warfarin (18 years and counting) has greatly reduced the number or people who died or were left vegetables through AF related strokes.
It is also worth remembering that whilst AF accounts for only 20% of all strokes, they represent 80% of the most severe and least recoverable ones. The simple reason is that since the clots form in the heart they are large,r able to block more of the brain and cause more damage.
I gather it's not known why the thrombi can form in the atria and that the AF might be secondary to this. There's some evidence that changes in the atrium muscle itself or in the atrial appendage - even its shape - put us at risk. hence the need for anticoagulants for life.
Steve
I heard a quote from Dr. Gupta of York Cardiology “ Don’t base your decision on how you feel today” …. It’s worthwhile watching him talk about the treatment. I did and then talked to my GP and although I’ve been a refusenik I’m now a convert …
hi I have had AF on and off for years two abalations and several cardio versions I am now in and out of AF thankfully more in than out - I had a long discussion with my consultant about blood thinners as my age 64 meant my risk score was right on the border line in the end my choice but we agreed I wouldn’t take them - 6 months ago I had a stroke - thankfully relatively mild and I have made a full recovery but am now on apixaban daily - everyone’s circumstances are different and like you I want to take less not more drugs but take the time to think carefully about what your consultant says and maybe get a second opinion if that would help - good luck 👍
Well, sorry but I’m a reluctant taker, I’ve had severe neck and head pain for months, some days constantly all day making life miserable. I believe its the anticoagulant and they can cause this, I’ve researched. I’ve recently paid out for a shoulder consultant, MRI and several osteopathic treatments all to no avail. The shoulder consultant referred me to a ‘neck’ consultant and apparently I’ll require yet another MRI! Osteopathy usually works for me in a couple of go’s not this time, it’s GOT to be the anticoagulant. Have had to wait more than 2 weeks like this to get a 1 2 1 GP appointment which is tomorrow.
Yes, we can not afford to take risks, but there needs to be proper consultations to ensure it is right for each person and regular checks. I don’t believe I need it, I’m a bleeder! However, shoved on it in hospital without consultation and I can’t risk not as father and Grand mother and a sister of his had strokes, but they don’t taylor it for the individual,
My thoughts: a) the hypertension is the biggest concern - how high is important I think b) do the anti-coags give you any major side effects?
If blood pressure high, anti-coags are probs a no brainer.
If no/minimal side effects then also a no brainer.
I had AFib - looks sorted by ablation - blood pressure is normal (124/82), am fit as a fiddle (3 triathlons this year) but still take anti-coags as no significant side effects.
Please don’t worry and as everyone seems to be in agreement anticoagulants are the best help to avoid a stroke.
I take apixaban and have done for about 4 years. Unfortunately I’m clumsy thanks to ill fitting slippers and have had 3 falls on the paving in the garden and on the second fall I had a brain bleed (any bang on the head you should call an ambulance I was told) and in hospital they gave me the reversal drug through a cannula and I had to keep off the apixaban for 2-3 weeks to allow the bleed to heal
I was on rivaroxaban before but this didn’t agree with me and I kept getting urinary infections
like most of us .. I don’t like having to take the meds. I was diagnosed with PAF 3 years ago just before my 65th birthday. Take the AC’s without a second thought, don’t want to even contemplate the alternative risk factor.
If it was me, I'd be taking them (and do). Despite my PAF being very infrequent post two ablations (last short bout 7 months ago) and in view of the fact that all the male lineage in my family have died through strokes or complications thereof, I wouldn't hesitate. Whatever the outcome at least I can say "I tried"
3 is a high score on the scale. I guess it all boils down to whether the risk is worth the reward. Having seen the effects of stroke on people, I'll take the tablet, even though my score is less than yours.
Just bear in mind, once you realise that AF has reared its head again, that potential clot may already be formed and on its way.
hi Sheila it sounds like you are doing great but I know for myself I would be scared to death to not take my blood thinner. My recent EKG showed that I had had a heart attack and I did not know it. My a fib has made me somewhat complacent as far as what it feels like. What would scare me even more is the thought of a stroke which is what a fib makes us prone to. I have been on my blood thinner for two years now come October and it seems like my body has adapted to it. I no longer bruise like a first did or bleed like I did. Even if I did I would still want to continue being on it. Anyway that is just my opinion. Best of luck I hope that you continue to feel as well as you do🙏🏻
My Afib PAF journey started in my 50's. I also have blood pressure issues. Once I had read about the risk of stroke and worked out that a clot would go straight from heart to my brain. Clots in your legs are likely to stop in your lungs but can go to your brain. I went to my GP and presented my thoughts. She was convinced and placed me on anticoagulants immediately. Along side my allergy issues I am on a few pills a day but would rather that then the after effects of a stroke. I'll add that two of my grand parents had heart issues leading to stroke and another had clotting issues.
30 year career as a military pilot; flight surgeon considered the irregularity insignificant.
CHADS 3
On Apixaban and want off that poison
I have same question as anxiousgran.
Apixaban has caused horrible bruising to where my arms are black and blue from fingers to above elbow. Slightest bump causes bruising. A small cut causes blood to flow like water. Told my EP Apixaban has caused me to lose use of my left hand...because I have to carry a box of bandages and a bag of bleedstop everywhere I go. I have muscle weakness in both legs, which has been shown to be a side effect of this drug.
I certainly enjoy following this forum but mostly feel like it is overpopulated with anticoagulant (AC) cultists. I am a numbers person. Someone please offer me some hard numbers (with references) that shows an absolute risk reduction of stroke by using ACs vs placebo.
Most of the people who bang the drum here for ACs are the lucky ones who don't get any side effects effects from them and don't have to weigh the side effects that make every day QOL worse against a stroke that may never happen. I hate being on Apixaban . It makes the pain in my back from a crushed disk much worse, gives me acid reflux and bloating and diarhoea. At least the full dose does. So I take a half dose and nattokinase plus supplements with antiaggregant properties. I still bleed for ages when I cut myself . When I have an afib attack I immediately go back to the full dose and continue that till I can't stand the side effects any longer. I know this is unorthodox and taking a risk but I have to have a decent quality of life. I do not wish to try Rivaroxaban as I reckon it has a worse side effect profile and my doc won't hear of Warfarin. So it's a rock and a hard place. But I get pissed off with the people here who think ACs are the greatest thing since sliced bread. For some of us they are not. Having said that I would not stop the Apixaban altogether and I would say to the poster to take it - she may be one of the lucky ones who get no side effects.
I was unaware I had AF until I had a stroke, 4 clots found on the MRI. Anticoags are a no brainer as far as I'm concerned, believe me its better to be safe than sorry. Strokes are so damaging, fortunately I've made a good recovery but I saw some awful effects it had on others whilst in the Stroke Unit.
Again I want to ask why does no one mention the risk of a hemorrhagic stroke from a brain bleed due to anticoagulants? It is the most debilitating and deadly type of stroke. I understand it is a rarer form of stroke and from what I have read it makes up 10-20 percent of all strokes. I am not suggesting everyone give up their Eliquis but to ignore the risks of internal bleeding does not seem balanced to me. I think we need a better approach based on individual risk and individual capabilities. I read a few months ago, and I apologize for not bookmarking the site, that a large study was being implemented that would look at the possibility of pip blood thinners. The participants are from 100 different cities. However, the results will most likely not be available for a couple of years. All I am suggesting at this point is that individuals be fully informed about all the risks.
I agree with your emphasis on individual risk assessment before simply quaffing down the ACs. I have had 2 cardiologists (1 EP) and a GP suggest that the most recent studies lean towards the highest risk of stroke occurring during an extended AF episode, and they are favorable on the PIP approach to ACs, one directly recommending that I take Eliquis for a couple of days if my episode goes over a few hours. They also emphasize paying attention to whether one has high blood pressure, diabetes, family history of stroke, or other predisposing factors. My father was on ACs and bled out and died from a comorbidity, so I am cautious on ACs. AF originates for many reasons, and not all episodes promote clot formation to the same degree; but I well understand people’s desire to feel they have some “safety net” with the ACs, even with the risks. As a research dr myself, I feel more studies are needed to parse refinements in this tangle of remedy vs risk. Until then, we have to carefully evaluate our individual risks and needs. (It took awhile to start using flecainide as PIP, so maybe this development is happening now with ACs.)
Agree with Auriculaire and Headwind in this string. Certainly anticoagulant has its place for some of us with AF but not all. I am 76 y.o. male with CHADS score 2 because of my age. I had about 4 AF episodes lasting from minutes to 6 hours, no trips to E.R., beginning in Dec last year and last episode in January. My cardiologist firmly recommended against anticoagulant. Since discovering my susceptibility to AF, I have been working to tweak my behavior by addressing my anxieties, exercising moderately to vigorously at least one hour per day and quite often more, by continuing a mostly plant based diet, and, though I was not much overweight to begin with, eliminating any “pinch able” fat around my waist to ease the burden of any fat around my heart. My goal is to attain a good level of fitness and absence of fat and then reduce to half my current 25 mg metoprolol daily and 50 mg Flecainide twice daily and then hopefully eliminate the drugs altogether.
About 10 years ago I was diagnosed with PAF. I was being treated at the Mayo Clinic, a renowned medical institution in the US. My CHADsVAC score was a 1. At this point in time there was no apixaban yet approved. To address stroke risk I was prescribed low dose aspirin (80mg) once per day. A few years later, during a checkup with my cardiologist, he spent a full 45 minutes “selling” me on apixaban, the new wonder drug. He explained that without the drug I had a stroke risk of about 4.5%. If I took it, my risk went down to slightly less than 1%. The cost for the drug was to be $500 per month. Also at the time—there was not yet any antidote. I chose to stay with the aspirin as I was very active. . About 1.5 years ago, after about 40 PAF events over the years that were getting more frequent, I had a successful ablation. I took apixaban during the 90-day blanking period, post ablation. I stopped soon after that due to nasty effects on my joints. Maybe I’m lucky not to be the 1 person in 20 that may have a stroke, or maybe it’s genetic and my odds are longer (or shorter)? I know I’m on the far side of opinion on this forum, but we all have a choice, don’t we. Either way, I keep my head up, stay active, and look forward to tomorrow. I think this simple Rx beats any meds.
I did not take an AC because I was worried about having a bleed which my father had and died from. After 8 months I had a major stroke and was paralyzed completely but made a good recovery thanks to the NHS and being very fit. However I can never get back the piece of brain I lost. I had to learn to write again, walk, throw, let go of handrails, be aware of other peoples feelings, balance a bike, work a computer, etc, etc. I will never stop my AC for any reason. I never want to be on a stroke ward again. I'd rather be dead. I'm 78 now. I had the stroke 3 years ago.
All medication is to maintain quality of life. If taking an anticoagulant would make you unutterably miserable, perhaps you prefer the higher risk ( that many people believe is real) of not taking it.
I was overjoyed when consultant said 9 years ago I should take anticoagulants. My GP told me a tale of an MP who died outside 10 Downing St from a brain bleed ( was on warfarin) but I was undeterred.
Mr Google will always find someone who agrees with your decision whatever the decision is about!
Hi anxiousgran. I also , like you was very worried about taking A/C ‘s as my mother had a brain bleed at a very young age. I don’t know what your weight is , but as my weight , is more than a stone , below 9 and a half stone , my cardiologist and I came to an agreement that I would take a half dose , instead of the full dose. Usually you also have to be 80 years old also to be put on the half dose, but I am only 65. This has worked for me and given me the confidence to take a higher dose if my cardiologist suggests it. Surely something is better than nothing.
I fully understand your anxiousness about this, and yes at your age. I just turned 70 this year and was put on 2 different ones and later found out they basically did diddly squat for me as they were not strong enough, so I was put on Warfarin. My new Nurse Practitioner told me she would like to see me on it for good as it is the tried and true, and for me the best one.
It is a little scary for me even today after about a year, and yet things are much better. I had, according to our hospital here in Canada, an overt (silent stroke) which is much different than a TIA from which having a TIA one can recover quite quickly, but the overt ones can cause a lot of damage, and yet you don't even know you had one.
Being on an A/C has given me a better outlook on things for my life at this time.
Take care, and please remember that no matter how loving and supportive everyone around you may be you are your own best advocate.
Thank you for sharing your message with the members of the Forum. AF is the most common arrhythmia and affects many individuals of any age, and yes the CHAD score system determines whether anticoagulants are necessary. Please visit the AF Association and download our patient booklet 'Preventing and AF Related Stroke' before making an appointment to see your GP at your very earliest convenience.
Thank you for all your extremely informative replies.
I was hoping, with the infrequent nature of my PAF and the normal holter monitor results, that anticoagulants would not be necessary despite the CHADs VAC score of three.
However your posts have enabled me to make a decision and I have an appointment with my GP next week. I'll let you know how it goes!
''An independent review commissioned by the trust would eventually find it was possible the atrial fibrillation caused the stroke and therefore possible blood-thinning medicines could have prevented it, the ombudsman's report said.''
I was worried about taking anticoagulants to begin with (I am CHADS 3) but now feel they are a necessity.
I am also a woman over 70 with a history of high bp and PAF (that only makes a CHADS score of 2 for me) I also wonder whether anti-coagulants are necessary. I understand that stroke risk rises exponentially with age, and that stroke risk is similar between PAF and permanent AF, maybe because clots form at unknowable times during afib, and are released at unknowable times. What I don't know, maybe nobody does, is what my individual stroke risk is. The CHADS test seems too simple to me. 5x risk of stroke only applies to those old people and most at risk, not to people under 60 or so. On the other hand, once you actually have an ischemic stroke (or are close to somebody who has had one) and survive, you wish somebody had forced you to take anti-coagulants.
I hate the added expense of Eliquis and having to deal with yet another prescription, but it is hopefully going to keep me from suffering a stroke. An ounce of prevention as they say...
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