I'm wondering if I really do need to continue with Rivaroxaban 20mg. Diagnosed about 15 years ago with paroxysmal AF and an ablation 13 years ago, I haven't actually had a bout of AF for over two years. I only experience ectopics and even they have reduced since taking magnesium and CoenzymeQ10. I'm continuously concerned about the risk of bleeds versus stroke. Has anyone else chewed over this dilemma?
Anticoagulant: I'm wondering if I... - Atrial Fibrillati...
Anticoagulant
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DIB69
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BobDVolunteer
There is no dilema in my view. Ablation, even successful, does not remove stroke risk. I haven't had AF since 2009 (that I know of ) but will never stop taking my warfarin. Unless you do stupid things and injure yourself like falling off horses or full contact cage fighting you are at very little extra risk of bleeds whilst still being at uch higher risk of stroke. Anticoagulants, contrary to the erroneous monica "blood thinnners", do not thin blood so do not make bleeding more likely though because they slow down the clotting process it may take longer to stop..
Bob if the churning mechanism of AF produces clots that can lead to stroke . If you are no longer having AF how does the stroke risk continue ? I genuinely want to know how you are at risk over and above the general population ? I can only see it acting as prophylaxis against another AF episode I cannot understand how the stroke risk continues in a lone AF oatient who is not having AF. How does that work ?
I don’t know the answer and my understanding is that the medics don’t know either. I am listening to the Haywire Heart and one theory is that the atria are not beating that great even when not in afib, hence the clotting risk continues. But it may vary, hence research on PIP approach to paroxysmal afib. Some serious studies have started.
This has some interesting stuff in it.
onlinelibrary.wiley.com/doi....
Many thanks will take a look. Makes sense if significant enlargement of the atria has taken place, but not if size and ejection are normal which can be established by echocardiogram. Many thanks for including article I will have a read
This is a fascinating read and via the same link that another member of this group has mentioned. I'm sure that given time and further study we will begin to see a much more tailored approach to medicine in all its forms and for a variety of conditions.
It was explained to me by a leading EP that the process of ablation changes the internal surface of the heart making it less smooth than nature intended. In the same way that sediment in a water pipe can result in more sedement being deposited, the rough surface in the heart can creat eddies which could allow clots to form. Makes sense to me as an engineer so hope that helps.
My EOP told me that it's because you can be in afib and not know it! This happened to my brother and he had a stroke before being diagnosed. Not worth that risk in my opinion. One regret I have is that I can't ride horses anymore, then again it's unlikely my brother will drive again as the stroke affected his vision, wouldn't swap with him
sorry about your brother
Very sorry to hear about your brother. Both of my sisters had strokes in their early/mid-sixties, before their AFib diagnoses. Luckily mild in one case, and the other was major but she got clot-busting drugs in time.
I’m ten years younger, so you can imagine how worried I was. I got a retinal vein occlusion before I was 65, and did go to the GP several times as I was concerned, but the AFib didn’t get diagnosed until last year when I was 67. Was told earlier that would need to be 65 before I got anticoagulants anyway, as I didn’t have other risk factors. I was very relieved to get them on diagnosis, had been feeling like a ticking time bomb!
Sadly lost both my sisters fairly recently. One did well with the AFib but got a totally unconnected brain tumour. The other became less and less active, started taking falls, and was switched from warfarin to a NOAC when her INR went totally out of control. After one fall there was a microbleed on her brain, so the NOAC was stopped. Within about two weeks she had a major stroke from which she never recovered.
It’s all resulted in me being a firm believer in taking my apixaban, and also in keeping as active as I can. In persistent AFib now after an ablation that lasted 2 days. Fairly sure there is a genetic component! Did a steep walk up to Aira Force today, and pushing on as much as I can.
I don't mean to intrude in a private conversation but I have had afib for over 30+ years now and my EP asked me yesterday if I wanted to wear a holter monitor for a couple of weeks to see how many times I go into afib., as we can be in afib not knowing it whether sleeping or awake (asymptomatic) and thus when we do are more susceptible to blood clots. Sorry if I intruded I was just trying to answer your question. Have a GREAT DAY!
No intrusion not a private conversation . My AF has been at a rate of 175bpm and feels like an enraged rabbit trying to scrabble it’s way out of my chest pretty hard to miss . I can hear every heartbeat in my head unfortunately and wake up instantly with the slightest change of rate or rhythm . I accept what you say, my Dad was in permanent AF and wasn’t aware . I guess you make your own decision about how confident you are that you know what is going on
It sounds as though you would benefit from an anticoagulant. I fought my EP for years, being an ex boxer, great shape at one time but the risk of stroke was not worth it to me and my EP never really tried to push it on me saying it's my decision but I finally gave in and am very thankful because I made a big deal of how taking it would change my life but then I realized it would be nothing compared to a stroke and give me peace of mind as stress can cause afib episodes. I am now taking apixaban 5mg twice a day and have not had any issues except banging your arms can leave a red mark. It is a personal decision. We are all different but I was on a heart rate control drug called Tikosyn (dofetelide) for about twenty years and it did wonders for my 230 BPM rate, brought it down to normal, you may want to check it out with your EP. Unfortunately due to weight gain and stress (marriage) the efficacy waned and I was put on amiodarone which is so, so. Hope you find the combination of medications that works for you and please don't give up it can take a lot of trial and error. Best Wishes!
I don’t know either to be honest. But studies have shown that a person who has been diagnosed with AFIB has a greater risk of stroke even if they only have rare occurrences.!!
There is no way of arriving at certainty . Just summing up risk/ benefit . Swapping one stroke risk for potentially another . Individual decision
• in reply toJetcat
Do you happen to know which study, Jetcat? I'd be very interested because I haven't heard that from any kind of definitive source.
Jetcat• in reply to
hi biscuit when I first got diagnosed with AFIB over 10 years ago my EP told me learn as much about AFIB as I could because I would get a better understanding of the condition/disease and it would also help them when asking me questions about my symptoms etc. I researched every bit of info I could get my hands on at the time( as I was a little obsessed at the time)!! and I did read studies and info saying that even if your AFIB burden is low and controlled we are still at a higher risk of stroke, that’s why Id rather be on anticoagulants even though my chads is nil etc.! I looked at that many results and sites over the years I couldn’t possibly tell you which ones to specifically look at.
Not sure why you think it is a dilemma.
I have taken Warfarin for many years and see no problem continuing to take it.
The risk of stroke is far higher than the potential risks of being on anticoagulants in my opinion.
Pete
As I have said before in this forum, I have been on warfarin since 2007 with brief experiments with Eliquis and Xarelto. Didn't like either one and went back to warfarin. I am aware of what I eat and have only had one problem. I spent a month in India in 2016 and couldn't get adequate green vegetables. When I came home my INR was 6.7. I was sent to the ER and after tests was told that I didn't have afib. I guess the wholesome vegetarian diet and lack of coffee and alcohol took me out of afib.
BobDVolunteer
Aspirin has no place as a prophylactic against stroke for people with AF whilst still having great potential to cause harm. OK if there are other cardiac issues, especially where stents or valves are concerned but not with lone AF.
He might have some other issues that Anne hasn't mentioned like plaque build-up in the arteries or maybe, like me, a scan showed he'd had a silent heart attack sometime in the past. Aspirin is to prevent heart attacks, apixaban strokes.
No one enjoys taking medication but the one message that comes over loud and clear here in the UK from those who know about things, is that if you are diagnosed with AF, score 2 or more on CHADsVASC you should be prescribed and take an anticoagulant REGARDLESS of any treatments you may have had to control symptoms. The reason is that at the moment, there is no known cure for AF so it could return at anytime and because treatments may suppress symptoms, regardless of what they might think, people may not be aware that AF has returned. Apart from that, as has been said, ablations do not remove the stroke risk anyway, so whilst it’s up to any individual to decide what they take, they would be unwise to ignore the recommendations.
We hear a number of people on this forum say that they have decided to stop and that it works for them. The problem is that there are no warnings, there is no second chance, if it happens, their lives will likely be changed forever. Unless you have close relatives with a history of internal bleeding, we are told that the risk of stroke outweighs the risk of a bleed but at the end of the day, it’s up to the individual to decide……
waveylines• in reply to
I'm sorry but I have to dispute this blanket statement of no matter what treatment you have had, in the UK you will still need to take an anticoagulant. It's just not true! I've had two highly qualified knowledgeable specialists working in the NHS who have both told me that once I have under gone their recommended treatment I will not need to continue with an anticoagulant. I'm delighted tbh as anticoagulants have caused me a number of bleeding/nedical problems.If you are lucky and have no problem taking them, then great for you. Not all of us are blessed with such great fortune.
It would be great if discussion not blanket judgnent was given space on here!! So come on people......
• in reply towaveylines
If that’s what you have been told by your medical professionals then obviously you should follow their advice, particularly if you have a higher bleed risk than normal. As you know, we are not medically qualified, and those of us who take the trouble to offer advice cannot possibly take into account every variation that can apply to the population at large. This is why I and others always stress that patients must follow the advice given by their medics especially if it differs from what I have suggested. Similarly, the lectures and presentations that I and others have attended over the years are based on generalised situations and they too, go to great lengths to make sure patients follow the advice given by their medics who will be aware of their medical history.
waveylines• in reply to
I'm not disputing that Flapjack.... But closing a discussion as an absolute is a great shame..... Because as you will be very aware the recommendation for anti coag dosing is done on a population average not on individual need. And as you know there is current research looking into individual needs as opposed to population averages. I do think it's important discussion is allowed on this topic.It's an area of development not fixed. And what was raised was by a member who had had specialist input advice telling them that risks of taking an anti coagulant out weighed the benifits. I found that interesting. .
I certainly wouldn't advise anyone to just stop anticoagulation without proper medical advice for their individual case. I don't believe that was what was being discussed....
And for some people anti coagulation doesn't save their lives but costs them their lives. It's not black and white. It's important that is also recognised.
• in reply towaveylines
I really do not understand what you are on about. As far as I can see, nobody is trying to close down any discussion. Some one asked if they should consider stopping their anticoagulant, the vast majority seem to share the view that it’s not a good idea. Someone introduced the use of aspirin and I think we all knew where that was going.
Some here seem to forget that the forum is here to help an awful lot of ordinary people who are scared, know little about their condition and probably are not getting the medical help and support they need to understand what’s best for them. This is why some of us put in a lot of effort to help insure they get the help they deserve
waveylines• in reply to
Indeed we do Flapjack. I wasn't aware that that was under dispute! 😊😊😊
I think it is important to qualify this situation of stopping anticoagulation post ablation. IF a person is put on antcoagulants ONLY for the purpose of the ablation and recovery period then it may be possible to stop once recovery is complete.
For example a male patient aged 34 with lone AF and no co morbidities has a CHADSCASC of zero so would not normally need to be anticoagulated even with persistent AF . He would, of course, need anticoagulation for a period (usually at least a month) prior to any ablation or even a cardioversion. The system being what it is this may mean him taking such drug(s) for quite some time. Hopefully after full and complete recovery he would be able to stop taking it so there are a few occasions when this is OK. There was no need before so no need now in other words.
As we appear to have adequately established, aspirin is not reccomended as a prophylactic for stroke in most parts of the known world and in fact has more chance of causing harm in such circumstances.
And f course the other option is to have the offending atria appendige removed so it can't pool blood with the risk of forming clots....This Is what is recommended for those who cannot tolerate or unable to take an anti coagulant.
Agreed BUT the jury is still out as to if that is wise. Some consider the LAA a valuable part of the heart and it's true function not yet understood!
I need more information than that comment Bob! Please spill with references.... Especially as am about to have mine stapled closed and others have had that done already. Thanks
You have to make your own mind up after discussion with your treating doctors but do consider how new all these treatments are. Catheter ablation has only been around for about thirty years for example. People routinely had their tonsils removed when I was young and appendix too but now those tend to be left unless actually ruptured. The medical world is a mix of adventurers and traditionalists.
So Bob on that basis are you ruling out an awful lot of effective medical and in many cases life saving advances because it's not been around long enough? 30years is not long enough ....? Hang on though didn't you have ablation twice? I'm only asking you to back up what you stated with research evidence Bob. You made quite a statement. You said "the jury is still out as to whether it is wise!" who is this "jury"? Yet its been approved by the NHS & many other renowned medical institutes as safe and effective. I get it now that you weren't referring to a medical jury but Bob's jury!! That is your opinion and you are entitled to your opinion but maybe you should've said so?
Medicine does move on at an ever increasing rate. ' recent' medical developments have saved the life's of people I know. I'm grateful.
I'm not giving an opion but suggesting the everybody does their own due diligence. There are doctors who believe that the LAA has an important job to do which is not yet fully if at all understood but may involve blood pressure control. I mentioned this a few days ago also.
I agree that for the very few people who really are unable to take anticoagulation then a watchman type device is a possible alternative but total removal needs careful consideration. It must be accepted too, that whilst the LAA may well be the source of many clots they do not exclusively form there.
There are two forms Bob Closure and removal. Closure is done with a clip. And is the one recommended by NICE. Proven safe for those who don't tolerate anticoagulants well. Its agreed that the vast majority of clots are form in the LAA and that closure means anti coagulation is not necessarily. Have a nosey at the guidelines. Thanks
• in reply toBobD
and cardioversions too! That jolt could do an awful lot of damage otherwise😩
Peony4575• in reply to
can you explain , why if the AF is stopped the stroke risk continues ? I can’t see the logic . If AF can cause clots through its churning action , and AF is stopped. Why does the stroke risk ( over and above what anyone else has) persist ? Saying AF might return is not the same thing
• in reply toPeony4575
I’ve just seen this Peony but I see Bob has already replied to a similar question. I think Dr Sanjay Gupta also has a video which may help…
Peony4575• in reply to
Thanks
Bob replied that the inside of the heart is no longer smooth like nature intended the the ridges caused by the ablation may make it more likely for a clot to form. As he said a little bit of sediment in a pipe promotes more sediment, totally logical imo
With you on that Peony.
Ya, I often wondered that myself. My case; I had 1 AFIB episode 3 years ago, prescribed Diltizem and Xeralto. No ablation or other drugs. I never asked why I was no anti-coags for life, but now, reading and re-reading so many posts, am I drawing the wrong conclusion that maybe only those who have permanent afib and have had ablations are on them for life..BUT, I will always consult my medical professionals. Always. I have no other medical conditions, and have bashed myself and bled lots, cut myself and bled, and didn’t bleed out. So I have no issue taking them.
As far as aspirin is concerned, and especially the “low dose” version for afib, my Dr. Said “that is not recommende for you.”
Hope this excerpt helps clarify why;
okheart.com/about-us/ohh-ne...
I think even if you have only one AF episodes the doctors want to put you on anti coagulants for life. I think people have different opinions on this , medics want you to take the drugs to cover all bases but like all drugs they are not risk free . Thank you for the link, that is something I have wondered about I will have a read
I concur. I understand the concern over warfarin, as it is 1st gen anti-coagulant, and does have (according to my BIL) some size effects and cautions, whereas the new gen ones are pretty safe. Like I said, I do a LOT of outdoor stuff with and around sharp stuff, and I have tested the clotting ability while on Xeralto..no issues, I clot up fine. And I have no issue with taking it for life, as I just consider it “extra insurance” against strokes.
Peony. Just 1 episode a year ,no comorbities and 1 walk 35 mile a week, heart in A1 shape but because I'm 78 and female I'm classed as high risk, somehow I don't think so and as for AF begets AF I don't know where that comes in ither because there's nothing I could change in my life. I take 1 medication only and that Med is Apixaban does it make me feel safe, no it doesn't I know this is going to spark a lot of comments ,but for me it's one size fits all and somehow that's wearing a bit thin. RANT OVER .
That didn’t sound remotely like a rant , just you reasonably expressing your opinion which you are entitled to do . I agree with you . My Dad had haemorrhages in his retina and a stroke on warfarin but I don’t know if it was haemorrhagic or not because he didn’t go to see anybody about it for ages . He died of bowel cancer and of course the warfarin made his bleeding from that much worse and his condition was only discovered when he was so severely anaemic he started passing out and was taken to a&e and he had been back and back to the GP. So we have things in our family that make us cautious . I have had the two episodes two and a half years apart and the second one could have been avoided . I have a friend who is s consultant and he has had a couple of episodes of af after drinking too much . Hasn’t had an episode for a few years as still drinks but not more than 3. He told no one about his episodes and isn’t taking anything . That’s interesting
It's all very interesting Peony . I guess because my Dad died in his sleep from a bleed on the brain aged 68 makes me all the more cautious as he was on warferin. Mam died at 98 of old age, she had AF and wouldn't take anything. We have a right to question it. But my Beef mainly is 1 size fits all and to me that doesn't equate . I think that we are brain washed by Medics . At the end of the day we all have to make our own decisions and I guess I will keep taking the Pill because I'm too bloody scared not to.
Yes for now so will I but I wish I hadn’t agreed to take it but didn’t want to fall out with my EP. Plus I know I am covered for anticoagulation at least if I am travelling , long drive to visit my son . You are right about one size fits all. EP wanted me to take beta blockers and I said why would I take a nasty medicine every day with a resting HR of 58 to counteract something that may not happen for years . She said fair enough . One size fits all, follow the protocol, don’t engage brain
he may still have sadly passed away from a bleed on the brain without taking anticoagulants. Bleeds are quite a common occurrence within the population who are not even on coagulants sadly.
I don't think you are alone in your thinking!! It's simplified doctoring.... Black white thinking...... Medicine needs shades of grey and medication if required to match. So glad they are researching this finally!!
Wavelines. I really do think that PIP Antioagulation will happen one day for Patients like me but in the meantime we have to accept the advice we are given . Thanks for the reply .
I am all for personalised medicine but until that day arrives unfortunately we have to live with what is. I came off anticoagulants after one year without AF - with consultation with my EP back in June 2015. September I had a TIA even though I had no AF. I couldn’t get back on Apixaban fast enough. I think that logic rarely dictates the choices we make - emotion does and the strongest emotion is fear. I take Apixaban purely because I am terrified of having a stroke. Others may choose not to take anticoagulant for fear of bleeds - statistics can be misleading and a very blunt tools - but they are the best we have for the moment to predict who is most likely to stroke if they have or have ever had AF. Opinion amongst doctors varies a LOT but most I have come across are willing to have a discussion and are not dictatorial - but there is always one!
On AF begets AF - unfortunately that has been my experience and I also thought I had good lifestyle however I did change a lot and it has given me an improved quality of life. My AF became almost daily and very symptomatic.
One thing for sure - there is no one size fit all for anyone with AF.
C Dreamer I understand everything that you say and if I'd been in your shoes I would react and make the same decisions as you but I'm not. I admire you for having that piece of mind. I only wish I had the same.
It's complex not simple especially if anticoagulants causes you complications like bleeding. I look at it like this: nothing is perfect but it's a question of taking the action that gives you the best balance in an imperfect choice. For me it was halving the dose.... May or may not give me the same protection.... No one knows but at least I've not had any major bleed since doing so which is also dangerous. For me as catheter ablation isn't an option EP says only a mini maze plus closing the LAA flap at the same time is probably the best I can do to protect myself & give me self the best potential outcome. There are no certainties only probables. It's that balance of probables we as patients have to weigh up with guidance from knowledgeable medics. I think that's the case for a lot of medicine if the truth be known. Absolute certainy is more rare than we think.
Waveylines. You are spot on about the half dose as that's exactly what I take. Because of my History and because I'm only 52 kl I asked the Consultant if he would be Happy with that. He agreed and said something is better than nothing. So for me it was the best balance in an imperfect choice. I wish you Good luck with the Mini Maze .
Thanks Nerja. And all I can say is that my EP said there were strong indications that for some people lowering the dose could offer as good protection.... It's just they have to figure out who and verify if this is really true through research. I look at it this way... on the full dose I could have a major bleed (already had 2 scares) and not get to hospital in time for the antidote... Or be unaware of the bleed if internal & not seek treatment till its too late. Equally I could find the half dose doesn't give me full protection after all & end up with a stroke. It's not much of a choice really... Both have serious risks. Lol.
Swings and Roundabouts Waveylines 😊
obviously I’m not familiar with treatments in Australia but here in the UK, all treatments offered are required to follow NICE guidelines and they make it clear aspirin is not recommended for AF primarily because it can cause internal bleeding which, if anticoagulants are used, could have very serious consequences so the advice offered was not based on a personal opinion…….
BobDVolunteer
Not my opinion. NHS Guidelines here in UK.
I agree. Over 65 = anti coagulant. I find this forum helpful, especially your own advice/opinion. I admire how you handle the somewhat difficult tone of some members’ additions to the conversation.
Thanks Bob. Very much needed information here. Very IMPORTANT. 👏👏👏
Not just Bob's ' opinion' but a medical fact. Aspirin works only on platelets, and anticoagulants work on different part of the blood to slow down clot production. Aspirin is given to post heart attack patients usually,especially those with stents.
UK practice is not to prescribe Aspirin for AF patients.
US and other countries may do. UK is in the forefront of heart research .
Thanks to Brexit.
US do not recommend aspirin any more for af. It's in their guidelines too. Ireland is the same, no aspirin, anticoagulation.
NHS used to give Aspirin - my sister was admitted to hospital for a gall bladder op. She had AF and they could not get her HR down so they sent her home with a packet of Aspirins - she had a a mild stroke a couple of months later. She was never called back for her operation, a gall stone migrated to a biliary duct, became cancerous and she died because the diagnosis was too late.
Omg I'm so sorry that happened to your sister. Xx
Thank you Mary
That is a tragic loss. So sorry x
I support Bob here. My cardiologist has spoken to the harm that aspirin can cause with little or no outcome.
I am very concerned about the risks of bleeds versus strokes and everyone should be 😀
I could repeat my chain saw story, but it's too early in the morning (in the US) for that 
I see you are getting all kinds of advice based on "guidelines" and "fact" -- more about that later -- but I don't know your medical history and nor does anyone else here.
What I can say in a general sense is that you may or may not need anticoagulants aka "thinners". It's based not just on your risk score, but on a whole host of variables that an MD who thinks critically (not just guideline based) can help you with.
In short, for someone like yourself, with a low frequency of afib events, the risks of daily thinners may indeed outweigh the rewards.
Now back to guidelines. A medical guideline is a committee base consensus, not always with full committee agreement, not always up to date with the latest research, not always made by the best doctors in the field, and these guidelines can differ from country to country. Does that make a US guideline in the US better than one in the UK? Or vice versa?
Perhaps even more important, guidelines are a "guide", something written to "guide" decisions, not something that should take a doctor's brain out of the loop to make a decision So a good doctor should therefore take them as a starting point and see if it's a good match up or not for an individual patient's issues. And then there is the patient themself, he or she should also have a say. This is called shared medical decision making.
I'm old enough to remember what I considered the "good doctors". The thinkers. Unfortunately, most of them are now retired or very soon to be retired boomers. Yes, they had guidelines, but above all they listened. They thought. And they wanted to hear what you thought. Of course they took the guidelines into consideration, but they took you into consideration first.
------------------------------------
Here's a great article on this, written by a doctor.
(In case you don't get through the article, here is the last sentence....\
"A 2001 JAMA study reviewed 17 “current” clinical guidelines advocated by the Agency for Healthcare Research and Quality, finding only three were up to date, and seven needed a “major update”.
HEAD: CLINICAL GUIDELINES MAKE DOCTORS STUPID
It’s a rather blunt thesis. But one experienced Australian emergency physician says there is mounting evidence a cultural shift risks turning doctors into “process workers”.
Dr Steve Walker has spent two decades rescuing people in helicopters with NSW Careflight, and also works in Penrith’s Nepean Hospital.
Now, he has warned that doctors’ critical faculties are withering as they blindly follow guidelines written by others to more quickly push patients through the system.
Dr Walker concedes much of his evidence is anecdotal, but he says it’s something that needs to be talked about. His view is based on his own experience and conversations with colleagues who fear that now, under more pressure than ever, they are being deskilled.
“It’s become a very automatic, and at times almost a subconscious, process,” Dr Walker told The Medical Republic. “Hand in hand with that, you lose some of the critical thinking that’s always underlined the medical process.”
Dr Walker addressed a conference of the Australian College of Emergency Medicine this month warning that Australia’s healthcare system was on the same track as the global aviation industry.
Three years ago, the world’s peak aviation body released a damning report that named “automation dependency” as a growing threat to air safety.
“They really said pilots no longer fly planes enough and it’s becoming dangerous, because there’s too much use of and reliance and dependence on automated, computerised flight,” Dr Walker said.
Pilots were being urged to return to the “old fashioned flying of planes” so they remained proficient, he said.
“When you try to squash risk too much in one direction it’s got a nasty habit of blowing out in another direction.”
While clinical guidelines and automation were generally good things, the same problems were emerging in healthcare.
Dr Walker, who graduated from medical school in 1988, worried that the next generation of doctors were not being encouraged to rely on their own clinical judgment.
“[Clinical guidelines] do offer protection from major departures in the standard of care. But every doctor in emergency can tell you the stories of patients who don’t fit a guideline or who have been put on the wrong pathway and have done poorly as a result.”
In the chaotic ED environment where doctors face increased time pressures imposed by bureaucrats, patients can be easily “pigeonholed”, he said.
Afterwards people scratch their heads and think ‘how the hell did that happen?’ Often it’s just because somebody hasn’t stopped and asked what’s really going on.”
Dr Walker argued there were additional problems with some guidelines, saying underlying evidence was sometimes of low quality, and that they regularly clashed between groups of physicians, institutions, and jurisdictions.
He said they were of more benefit to non-clinicians and administrators than doctors and patients, and had in a number of high profile cases been influenced by commercial vested interests.
A 2001 JAMA study reviewed 17 “current” clinical guidelines advocated by the Agency for Healthcare Research and Quality, finding only three were up to date, and seven needed a “major update”.
medicalrepublic.com.au/are-...
Jim
Thank you for taking the time to include this article in your response to my post. It makes for very interesting reading which I tend to concur with.
Thanks Jim. Well said!! It has worried me for years that the very guideline imposed on doctors (& therefore patients) has the potential to dumb down clinical expertise and/or to prevent doctors to act for fear of reprisal. An example of this was several years ago my B12 was very low but withing the so called guidelines. I had really scary neurological symptoms & physical deterioation, though the guidelines did suggest some action it wasn't the action my GP knew she needed to take and in addition the local CCG would not allow my GP to react and treat. So she referred me to a neurologist (the recommended route) but even back then there was a 7 month waiting time. Meanwhile I'm deteriorating rapidly, she wasn't allowed to start treatment with b12 injections... Her CCG said no. She didn't dare go against them because she could be professionally in trouble if she did. Scared I decided to teach myself, purchase the necessary and start injections, with no help or training from my GP. So I started doing b12 jabs all on my own b12, had to work out the frequency all on my own and 3 months later I went back and saw her face to face. On walking in she said oh my goodness, you don't need to say anything but what a difference.... It's massive. I still had another 4 month wait to see the neurologist. She still couldn't prescribe despite the evident evidence prooving my case. So I saw the neurologist, he agreed after examination that I did indeed need b12 injections but another 6 months went by before that treatment was started on the NHS. A total period of nearly a year. And to add insult to injury I had to wait to be trained in how to do an injection after nearly a year of doing it on my own!! If I hadn't acted I doubt I would've been walking by then and would have had irreparable harm done to my body. All because of NHS & local CCG guidelines, pathways & the insistence they are blindly followed.
I am not an isolated case there are many others prevented from proper& much needed treatment because of pathways and guideline imposed on us which prevents patients accessing the treatment they really need. Hypothyroidism is another such area. Arbitory guideline imposed by the powers that be mean that patients cannot get treatment until their condition is extreme... Leaving people out of work exceedingly ill for years. Many are having to self treat and therefore self fund and therefore do not necessarily have medical guidance. Those who can may seek private treatment but guess what the private practiobers are also being hit by rigid guidelines. It's not medicine but treatment by numbers... Like painting by numbers but in medicine. Doctors are discouraged to think independently and therefore do not.
So please don't go on about guidelines as if they are the bees knees There are serious concerns for patients and clinicians of the effects of these so called guidelines on patients health. The truth is we are all different and there is no one route/treatment that fits All. As a brilliant specialist doctor once said to me Medicines is as much an art as a science. How incredibly true!
I noticed the other day in my local supermarket (S Africa) they had ampoules of B12 injectable on sale. I know lots of people inject themselves, syringes and needles are very cheap in pharmacies.
In the UK they are not allowed to sell B ampoules to the public. Only obtainable by prescription. But in other countries you can buy them over the counter!! Even though there is no known level of b12 toxicity.... Your body will simply excrete out any excess.
Yes I think, like Vit C it's a water soluble vitamin?
Indeed it is. 😊
A very articulate response.
Great input, James--thank you for it. I'll throw in my story: Long history of bleeding from ulcerative colitis. Paroxysmal AF mostly triggered by digestive wobbles, and flecainide PIP stops every episode in a few hrs. Both of my cardiologists (one a Harvard EP, for what that's worth :-)) at first "pushed" anticoagulants, but now agree that it's not a great idea in my particular case. I also have very low blood pressure and slow HR from metoprolol, and all of these details figure into risk. The Harvard guy admitted, also, that the studies/research are tending to support PIP anticoag's, and also are casting doubt upon being female as adding "1" to the risk, as even the updated CHA2DS2/Vasc scores state. The studies are divided and many studies are underpowered etc., (I'm a former Mayo research dr. & read a lot of studies) but the public never gets to hear those details. So it is all a very personal decision, as many here say. NSR and good health to all, Diane S.
Thanks Like yourself, I also see a shift in ep thinking regarding PIP anticoag's. I think this trial will be closely watched.
Jim
Thank you for the kind words 😀 I believe the author of the article is from your neck of the woods.
Jim
You are absolutely right to follow the advice of your doctor but it is exceedingly dangerous and against forum rules to offer medical advice to members eg “Perhaps this is an option for you?” even it was only offered as a suggestion…….
I’ve no idea how many EP’s and Cardiologists with experience in arrhythmias function in the UK but I’d bet my pension that there is not one who would recommend aspirin for any one with lone AF. Whether or not you accept that is really not important but it ought to make you think why it might be. Making comparisons about how Doctors compare with those of yesteryear might also be entertaining but all we are trying to do is to help people to understand the risks they might be taking if they decide not to follow the advice of their doctor and do something which might cause a life changing disaster. At some stage I’m sure Jim will also refer to a study which has been approved in the States to investigate the possibility of using AF monitoring devices in a way that will enable a relatively small number of AF patients to take anticoagulants as a PiP. This concept is unlikely to happen in the UK. From the information I have, in the States it will take several years to even find out if rhythm-guided anticoagulation is safe and effective. Although they know these questions are no where near being answered, it is known that some people are already using NOAC’s in this way and there is huge concern that these people may be at risk.
Everyone wants to see improvements in the way people with AF are treated but coming with suggestions which are not tried and tested is obviously dangerous. I am not in any way suggesting that you husband’s EP has given him incorrect information but it would very interesting to hear from other members from Australia if aspirin is commonly used instead of an anticoagulant.
I sincerely hope your heart is feeling calmer…….
MyHF• in reply to
I was in AF in October 2022. I was also diagnosed with VT, cardiomyopathy and heart failure. I had a 24 hour drip of amioadrone which reverted me back to sinus rythem. When I met my cardiologist in January this year she stopped my Apixiban as she said the long term risk at my age outweighs the benefit. I have an Apple Watch which she is more than happy is looking out for AF for me. I’m in the uk. I still have cardiomyopathy, never had a heart attack nor surgery of any sort. In March this year I was started on baby aspirin daily as a CT angiogram revealed I have the beginnings of coronary artery disease. The whole idea of this forum is for people to share their experience. Well that is my experience right here in the uk this year.
• in reply toMyHF
Totally agree, isn’t it great when medical needs are properly assessed and treated accordingly to meet the individual needs of a patient but from what you are saying, your needs are more complex than those normally associated with lone AF….
So the aspirin is for the coronary heart disease prevention not AF x
Auriculaire• in reply to
If this concept is unlikely to happen in the UK then that is a minus for the UK and shows close mindedness. The studies being done in the US should be allowed to run their course and if they show that using anticoagulation in this way is not dangerous for some types of AF patients , then this would be a great bonus for those who are unable to tolerate anticoagulants due to side effects and who do not have options like having the LLA closed. They should in my opinion also run trials on whether lower than the standard doses might provide adequate protection as this "one size fits all " with DOACs is again unsatisfactory for those of us who get side effects.
• in reply toAuriculaire
absolutely right but I think in American, they want to manage expectations in an uncertain world and perhaps discourage folk from taking any chances they might regret. As for the UK from what we hear, things are very critical and I’m guessing that it’s a question of priorities
My EP told me there is research going on into looking at the individual dose level of anticoagulation rather than the current dose which is based on the average of a population study. Unfortunately the research won't finish for several years but at least they are looking at it.
GranmaWendy• in reply to
careful! only the doctor who made the recomendations has all the facts and knows all the reasons why he recomended this course of treatment. nobody on this forum has any real idea why an individual doctor has made a specific decision, and it is unfair to criticise
• in reply toGranmaWendy
You’ve lost me on that one Wendy, I spend most of my time suggesting folk follow the advice of their medic for exactly the reasons you’ve mentioned,
I started on a high dose of soluble Aspirin when I first developed P/A/F, some time later, in 2000, I had a stroke, thankfully a mild one I imagine saved by the Aspirin and have now been on anti coagulants ever since.
I don't know your medical history. I'm very happy to take an anticoagulant, thereby reducing the chances of having blood clots. You can't undo a stroke, but anticoagulants can reduce your chances of having one.
Sorry Anne. I would've welcomed an open discussion on here..... thank you for raising it
If my husband hadn't been on anticoagulants, his stroke covid related, would have been much worse .
The risk from bleeds is considerably less than that from stroke and the effects are likely to be less serious in most cases. The new generations of anticoagulants are far safer than those used previously.
In making your decision, I can only say what happened to me, as someone who believed I was suffering only from paroxysmal AF and for whom symptoms were largely absent (as far as I knew) apart from episodes of breathlessness and tiredness. I worked very hard physically, ate healthily and took a great deal of exercise dog walking twice a day for at least an hour. But I didn't take an effective anticoagulant, as nobody had ever suggested that, just aspirin once a day which my doctor just kept prescribing.
At the age of 74 I just went into the garden to continue weeding after lunch, and bang, I was overtaken by a stroke and could not speak and very quickly my arm was paralysed. Luckily I was whisked off to hospital in France and got prompt treatment, but even so my life has been changed and I spent a year unable to do anything physically due to exhaustion made worse by acute depression and anxiety. Even now three years on I still struggle with tasks I found easy before.
If you really are prepared to face that kind of risk, and there is no certainty that a stroke will not be fatal even the first time, then it is very much up to you and your medical advisers, but I always regret that my doctors did not put me on apixaban or similar at the time when my AF was supposedly just paroxysmal.
Hi, your post is very interesting to me, being AF par myself. i am on apixoban and they have me on beta blockers bringing my heart rate too low these are at the moment, but from all i hear the anti coagulants are the important part of control and not so much the beta blockers as these will not prevent strokes but keep heart rate lowered.
Bit of a minefield AF in general. Never knew anything was wrong, bit breathless on occasion on dog walks etc, but no idea of AF. I dread the idea of a stroke as i am my husbands carer, and if i go down we are up the creek with no paddle at all.
On beta blockers, there is always a tendency in my experience for them to treat everyone the same and give too high a dose for people with light weight or small frame, as if we are all 20 stone! I would just try reducing the dose of your beta blocker to a level where it does not cause too slow a rate, unless of course you are on one of those tiny tablets which cannot be subdivided and are only available on a particular dose. I like sotalol as I can divide it up to suit me and how I am feeling.
Thank you for sharing your experience oscarfox49. It's a timely reminder of our own mortality and the need to err on the cautionary side.
So sorry to hear this Oscar. What has happened to you is awful. It shows that actually patients who have serious bleeds on anticoagulant are faced with an incredibly difficult decision as both carry significant risks. It's one of the reasons why I've agreed to the LAA to be clip closed. Then although I've been told I won't need anti coags if I do then I hope the half dose will top up the protection of the closed LAA. Sadly as you know only too painfully well there are no certainties out there....I am so glad you have improved but it must be very frustrating.
I was diagnosed years ago with syndrome x and my cardiologist at the time put me on aspirin and a beta blocker
Eventually I was diagnosed with afib/tachycardia and transferred to St George’s to both a cardiologist and an EP. They were both adamant that I immediately stop aspirin and put me on rivaroxaban.
Apparently aspirin causes tiny tiny holes in the stomach eventually leading to bleeding and ulcers I was told. Medication like rivaroxaban (and any anti coagulants) help towards stopping blood clotting especially behind the heart therefore lessening the risk of strokes. (This was explained to me in layman’s terms)
As it happens rivaroxaban didn’t agree with me and kept giving me UTIs so was changed to apixaban.
Even after my ablation it was considered best for me to stay on all my medication
Hope this helps
Ps….by the way a lot is said about the “risk” of bleeding unless you are particularly unlucky any bleed is simply reversed As I said above I am on apixaban and I had a really nasty fall and had a brain haemorrhage. I was taken into hospital, given the reversal drug and restarted on my anti coagulant 2 weeks later
I understand what you say re reversal agents when a brain bleed is caused by an accident or incident of which you are aware, but my brain bleeds were unexplained chronic bilateral subdural haematomas, and, living on my own, if I was anticoagulated the outcome could well have been catastrophic. Especially if I had become incapacitated before being able to call for help. 🤔
ooops Anne. Bit harsh on Bob. His answers are usually based on NICE guidelines not personal opinions
oh dear calm down please. Everyone tries to help and we all know that we are not medics and go by the guidelines.
pubmed.ncbi.nlm.nih.gov/294...
If you follow the above link you might get some better understanding on the reasons for differing opinions on anticoagulants post successful ablation.
I am on the trial I got randomised to 15mg Zarelto daily.
I get annual checks and they are also testing my cognitive decline (or maybe otherwise!!!).
Hope this adds some context on the mixed messages.
Geoff
Interesting Geoff.
You gave a response and then others responded to you....... that's how a forum works as far as I'm aware. No one has been rude or agressive towards you so not quite sure why you have taken such umbrage. They have just stated what the UK guidelines are on the matter which obviously differ from some other countries. No need to get upset about anything.
My mam had an AFib stroke, devastating, never walked, talked or looked after herself again. Nine years in a nursing home. I think I'll take my chance with a bleed in comparison to a stroke
I have read all the replies to your initial post, if you dont like people telling you their opinions, then why initially ask for advice. This clearly has turned into an argument. I dont log onto these questions for this, i too have AF intermittent, and only on thinners and beta blockers.
What i DO know of aspirin as well is that like a friend of mine, he is on aspirin aswell ONLY because he has stents fitted aswell. but no one I know just with AF is on aspirin.
I wouldn't even consider stopping anticoagulants, I want to reduce the risk of stroke so I will always continue.
i have recently been diagnosed with paroxysmal AF, I had no idea i had a problem, but was put onto Apixoban and Bisoprolol. I have to admit that i am not tolerating the Bisoprolol easily, but i would remain on the anti coagulants as wreckless to stop them i believe.
My dilema is that the Bisoprolol is causing my existing naturally low Heart Rate around 55 - 60 to go down to 44, and slight lightheadedness at time,s together with awful ringing in my ears, and a pressure feeling in my neck each side when i bend over but this may be my ears that are feeling full, getting headaches too which I never have, either way, my GP told me yesterday to stop the Beta Blockers, but i am not happy to just stop them, i am at present still waiting for cardio referral because up to now apart from the initial ambulance taking me into hospital with very high h.rate which took 5 hours to bring down, i have seen no one only my GP.
My question is has anyone else had unpleasant side effects with Bisoprolol . I should add that i have a close family history of sudden heart attacks, own Mother died in her sleep at 42 with massive MI, her Brother, and my own Brother too, he was 59 recently.
Many people get unpleasant side effects with Bisoprolol. If your afib is paroxysmal and your heart rate when not in afib naturally low I cannot see the logic of taking it all the time. It is a very weak anti arrythmic and for some people will make none or marginal difference to the frequency of their afib. You might ask the GP about using it as PIP only to reduce the heart rate you have during an episode - if that is too high. As for coming off a slow wean is best so as to minimise withdrawal symptoms. Some people do not get these , others are badly affected. You don't know which category you will fall into beforehand so better safe than sorry.
I was diagnosed with lone AF 14 years ago and at first just left in it and prescribed a beta blocker on the basis of the dogma that it didn't matter whether rhythm or rate were controlled (particularly if AF was relatively well-tolerated). Well, maybe it doesn't matter in terms of death rate, but it certainly matters to me in terms of QoL!
However, what really made AF intolerable for me was the beta-blocker (metoprolol in my case). Like you, I had a naturally low sinus heartrate (38 bpm!). And, when in AF, the BB made me feel about 90 (I was 50). I suffered severe postural hypotension and a sort of mild nausea, sea-sick feeling the whole time, and was tired and a bit giddy. I just felt like the whole sky was bearing down on me if I took a BB during an AF episode (let alone outside one!). Medics fret about heart failure in AF, but I was actually far happier in AF at any rate without the BB.
The question is why?
Fast forward a few years and my thinking is that it wasn't just my heart that was going slow in sinus rhythm, it was my entire metabolism. And careful scrutiny of my rather unremarkable prior medical history reveals elevated cholesterol, elevated creatinine, wide RDW, low platelets, hyperbilirubinaemia (Gilbert's), low B12 (without suspicion of PA). So, kidney, liver, heart, gut, blood cell production, all my functions needed geeing up.
Which I take now, in combination with testing I have had performed since, as evidence of poor conversion of T4 to T3, that is a latent 'thyroid' condition.
And, possibly, also a pervasive mitochondrial condition, since a couple of years before I was diagnosed with AF I had a persistent bout of UTI and prostatitis, which was treated with prolonged cipro and ibuprofen (a toxic combination, and not just for microbes). That is, I was 'floxed'. My Achilles tendons tightened up like piano-wire. And it is not impossible that this is the root of my problem, or certainly exacerbates it, to this day, because an adverse cipro response is often indicative of lasting toxicity, which is particularly detrimental to the essential mitochondrial energy packs of our body.
However, it is also possible (and these things are not mutually exclusive) that as we age we all suffer progressive deficiencies in thyroid and digestive function (which are linked).
And these naturally complicate and worsen any symptoms of AF, which are just much more prone to catch a medics eye. I do wonder whether my AF is not just triggered sometimes by a sort of 'breakout' rhythm, just because my sinus rate has slumped so low (my AF tends toward vagal, not adrenergic).
Whereas, anybody with a thyroid condition will tell you that far from treating it as a medical emergency like AF, most medics will raise a telescope to their blind eye, to the extent that they get further than a TSH 'in range' conclusion at all, or indeed that far.
And, to my point, many BBs will worsen latent or overt hypothyroid symptoms, see e.g.: healthunlocked.com/thyroidu... or healthunlocked.com/thyroidu....
It seems another BB, propranolol, is actually used by hyperthyroid patients with Graves disease to suppress their excess thyroid hormones.
And if there is any suspicion of hypothyroidism, either immune or due to low T4/T3 conversion, then it will be as well to check out the normal vitamin suspects too: iron, B12, vitamin D, folate, stomach acid etc.. It's all joined up. An adverse response to drugs like cipro or bisoprolol, like a diagnosis of AF itself to my mind, is instructive, and may be a canary in the coal mine.
Hi, Thankyou a lot to think about isnt there, but my thyroid is fine and all my bloods came back as good, its early days with me, but will make sure i speak to the organ grinder as soon as i can, but by todays speedy appointments, this may be months away.
I know what you mean. I have been called in 'to see nurse' myself. Like being back at school. As the scion of more than a few SRNs, I am almost inclined to think that this may even be more fruitful that seeing a GP. But I know that this is really just an admin back-saving exercise. 'Nothing to see here. All good. Check'.
the one thing you just pointed out is how different we all are. I have been taking metropolol from day one and I am still on it right now three months after the fitting of my pacemaker. I have had no problems with it and a difference also is, I had tachycardia not bradycardia so as others can see if it comes in all forms, which is why we can only really share our story to others not advise them only a doctor can do that. He knows your medical history.
thats interesting Nightmare2! I have occasional AF, and when it happens I find it a really unpleasant and scary experience. I had a chat recently with my gp about it. he assured me that, unpleasant though it is, as long as I am taking the anticoagulants all will be well. but he also told me that the Bisoprolol does not stop the AF all it does is control the rate, and that if I had a rate of over 140 for over an hour, I could take an extra one or two to slow it down BUT he warned me to be careful because Bisoprolol can slow the heart down too much. perhaps you need to discuss your slow rate with your doc. I find Bisop a very unpleasant med, but I take it at bedtime, which I find lessens the effects slightly
Thank you, yes initially, my GP told me along with the anti coagulants, that he suggested what they term pill in the pocket approach, i.e. if my heart rate went right up again and remained there, i could take one Bisoprolol to bring it down, but later the cardiologists at hospital (who havent even seen me yet), told Dr. to put me on one Bisop per day even though my natural heart rate is low always has been, anything from 55 - 60, i would have been happier with the pill to be taken as he first suggested to bring it down if needed.
To be honest, until i actually finally get my appt. with cardio at the hospital, its all a bit hit and miss, as, nice as he is, my GP is just that, a General Practitioner not a heart specialist.
He has told me to come off the Bisop, but i am loathe to do that so what i have done is halve the one tablet per day, i am due to see my GP next week, and i think i will try and push my appt. with Cardio.
Not pleasant is it this AF, quite frightening in fact. Good luck though with yours and hopefully stays under control.😃
you are very right about a GP. They are not heart specialists. I see that with mine. In fact, he has suggested things that I am glad I ignored and called my cardiologist instead. When I lived in Florida, it was very different my GP there had been a specialist in New York but they are hard to come by. Cardiologists, and EPS did not take all that extra training for the fun of it. That is what makes them the ones to go to. I was very lucky and my GP also had a great net work that he worked with, and I got a wonderful cardiologist who then turned me over to an incredible EP. Since I moved to Texas, it was not that easy. Now I have the best I could possibly have when it comes to a cardiologist and EP and they work hand-in-hand. That’s always a plus otherwise it can get quite confusing. Push for the cardiology if he’s good and you need an EP he will already have someone for you. Not everyone needs an EP unless you are going to need some type of heart procedure that your cardiologist does not perform.
Prior to my ablation in 2013 I too was tried with a number of beta blockers but , at that time, no anticoagulant based on my chad score at the time I guess. Bisoprolol was one of them but I can't remember which one I tolerated better than the others but I do remember feeling really unwell, breathless and having zero energy. The beta blockers were stopped after the ablation and I began to feel so much better. A few years later I was started on an anticoagulant and that's currently all I take.
Further grist for the mill.How often am I asked, by the medical profession at large, am I on a blood thinner.
No.
Zarelto, an anticoagulant.
Oh that's the same thing.
Most standard forms only allow a blood thinner answer.
I was given an ablation for atrial flutter in 2019 and told no more rivaroxaban, or anything, in fact. A week later I had my first bout of AF and was put straight back on rivaroxaban and told it must be for life, with even a single bout, so I suspect your husband might well be similar.
The issue seems to be that it might not be the AF per se that causes the micro-thrombi to form in the atrial appendage, and put us at risk, but some other and currently still not fully known precipitating factor.
Steve
Steve I definitely agree about things they don’t know yet. In the 2 1/2 years since I have had my first event I have discovered that it seems almost every doctor has a different view, and a way of doing things. I have had changes because of moving. I was very happy with my Florida doctors then came to Texas and oh boy what a nightmare going to one eye was suggested to go to supposedly cream of the crop. Because of him I was on a nightmare ride until October and had a high heart rate in the 150s the entire time which caused heart failure. It turned out even the medicine that the big shot put me on was for the wrong thing. My two doctors now are incredible. I can’t believe how lucky I am how blessed in fact, I believe they saved my life. My doctors now believe in quality of life, not repeating failed procedures, such as a cardioversions and ablations. There is no cure, and the odds with these things are not very good if no one told you. If you’re off, even a millimeter with the ablation, it could fail. And for something that has over 6 million sufferers I can’t believe how it seems. They are just starting to pay attention to a fib, etc.. It is a horrid medical problem as we know.
People out there just really know that there is no cure. I see so many questions and comments on here like people are shocked that they have it more than once. That is the rule of a fib in our life. Some people are lucky but so many of us are on a lifelong journey of this thing, and it is completely unpredictable and can’t even be seen unless you’re in an event when they’re doing an EKG. If there’s one thing to tell newbies, it would be about the fact that there is no cure so when they have good Times enjoy. I had one cardioversion that lasted 3 1/2 weeks. It was heaven.
Perhaps you should not be so comfortable following your doctor's advice. After all docs get it wrong- frequently. You could look up the guidelines that the Australian equivalent of NICE (TGA?) puts out on this matter and if it differs from that of your consultant ask him why . Maybe you have already done this and had a satisfactory answer. But saying that this is the advice of anonymous people on the net - that is ridiculous. It is the guidelines of the body that is responsible for prescribing advice for the NHS and also the European Society of Cardiologists.
'Has anyone else chewed over this dilemma?' Oh no hardly anybody 🤣🤣🤣
That's sooo funny... Love it!! 😂🤣
I had Af some 10 years ago.. ablated and never took anticoagulatants.. however decided last year to take them as I’m now Much older and a GP told me someone at the surgery in a similar position to me died of a stroke…hopefully I’ve lessened that risk..
Having had a major stroke I can assure you that you don't want one and that the risk of a bleed is far less. No competition in my book. Follow the NHS guidelines. Take anticoagulants even if you are just old.
All the best.
Roy
Roy I love what you said. Especially as we age, we have a better chance of bumping ourselves at Cetera, and having a bleed, but I would much rather have that than a clot that gives me a stroke. I was told with my pacemaker, I will still remain on anticoagulant and I have no problem with it
After my 3rd pvi ablation my afib burden reduced dramatically and after 6 months my EP told me I didn’t need to be on warfarin anymore, plus I had a chad score of nil.!! But I’m the opposite because I would have rather stayed on them to be honest.!!
No one wants a stroke from AFIB.! and if taking meds reduces the risk then I’d stay on them personally. Best wishes.👍 Ron.
I so agree with you. Did you ask him if u could? I don’t understand them removing patients from it. I almost think when we reach a certain age, although that doesn’t even matter when it comes to stroke, but when we reach a certain age, they should put us on it for a maintenance drug. My uncle had one and it affected his speech although his head knew what it wanted to say, he would cry trying to talk. That man had battled rheumatic fever had the first quadruple bypass in Boston, and so much more. He went in to have his knee drained they gave him some kind of wrong medication And destroyed his life. We had been raised to believe that our doctors were gods I no longer believe that I adore the ones I have, but they are all human and they can screw up. Best of luck maybe he’ll let you go back on it I haven’t had any problems with my Xarelto from day one and I am grateful for being on it until forever.
yes I asked the EP a few times but I got the same answer. He said there will be no benefit at all by staying on them.!!! And I got the same response from a cardiologist too.
I’m sorry to hear that. They are so close minded. I am a true believer in prevention rather than fixing it later I know diet etc. can help but many of the things they tell us cause problems we have already done. Please take care of yourself.
From Oz????...yep!!!
good answer from BobD
My vote's for Bob being better qualified than your EP (the one that switched hubby from DOAC to aspirin).
enjoy reading the responses to a question most with Afib think about on a regular basis and consider my self to be one of those. Does anyone know of a study/data that shows the % reduction in stroke risk for patients taking a DOAC vs not taking? For those with active Afib and for those with no apparent symptoms after ablation? Is it 1%, 2% or 20%, 30% or greater? For many of us knowing this type of detail vs a blanket statement of you must take - would help us feel more comfortable and informed in our decision! Clearly it’s not that simple otherwise studies Like OCEAN would not be funded. Let’s face it the easy answer for docs is to CYA and recommend to everyone and move along to their next patient.
I believe the risk reduction when taking an anti coag is 60+%. I read it somewhere but can't remember where 🙄 so don't quote me on it!!
My sister is 98 yo and has had afib for years. About 2 years ago she had a bad fall and developed a very large hematoma on her thigh. Her cardiologist took her off warfarin and put her on a baby aspirin thinking the danger of her falling with warfarin was the greater hazard and she has done well since then eating a normal diet. I see some people here are trying nattokinase. I recently read a study that said it was only about 50% as effective as aspirin.
Sorry about that. Many are switched from thinners to aspirin because of fall risk, which often comes with advancing age.
Jim
Without really getting "into" it; I had a very serious health event in early April and it is attributed to being on Xarelto ....for SIX years when the physician said without a real need, the normal time to be on it is six MONTHS. Now, I am having to go through very expensive testing to "rule out" other issues which may have been in part caused by the long term use of this medication.
DawnTX• in reply to
Best of luck with your health. I disagree for six months I don’t understand at all. There are various types of a fib, etc.. Perhaps he meant yours. I will be on it for life or some form of an anticoagulant even having a pacemaker. That’s fine with me. It seems like every doctor has a different answer for things again best of luck.
TracyAdminPartner
Please speak to your doctor, they who have access to personal records and will be able to make recommendations on a 1:1 basis.
We would strongly advise that prescribed medications should not be stopped or paused without prior consultation from your doctor in advance.
I am going to be on it for life and I’m glad. Most people don’t get it until they’ve already had a stroke. I have a pacemaker now but I don’t ever want to take a chance I’m having a stroke I don’t know what to tell you. No one can make you do anything, it is your choice. Once you have a stroke, you no longer have a choice.
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