I have been in NSR since having an ablation 3 years ago but still on blood thinner. Is this the normal thing to do ?
would love to stop taking it if not necessary , fewer medications the better as ever since started heart meds I experience body weakness
Most specialists agree that there is no eveidence to suggest that a successful ablation removes stroke risk. Your choice obviously but I'm fifteen years post my third successful ablation for AF and have no intention of stopping my anticoagulant.
Regardless of how long you have been in NSR,AF can return without warning and if not protected by anti coagulation (misnomer to say blood thinners) you are at risk of stroke.University of Birmingham did a large scale long term study related to anticoagulation and AF,concluding that AF patients on anticoagulants should continue indefinitely.
Best wishes
This question has often popped up on this forum ..... and in the past I've tended to ignore it. However, you've asked a simple question .... but my response is .... why do you want to stop an anticoagulant when its purpose is to assist in preventing a stroke - just saying "fewer medications the better as ever since started heart meds I experience body weakness" doesn't mean very much. Have you discussed your dilemma with your healthcare professional ? Of course you can stop it any time you like ......... so then what if you have a stroke, it may kill you, it may deprive you of QOL. Who knows ?
I'm on a shedload of drugs including Warfarin, I'll be on them for life .... so, if I have a stroke I can at least say I've done everything I can to prevent one. So back to your question .... how do you know your anticoagulant is the cause of your body weakness ... I presume you are on other drugs as well if so how do you know it isn't one of them causing this problem ? Do suggest you discuss this with your healthcare professional.
I take Flecainide and have had no AF in 9 years and would not think of stopping my anticoagulant.
Research evidence shows that simply having (or having had) AF increases our stroke risk fivefold.
Why risk it?
Please see Mrs Smith’s post about her husband who has recently suffered a stroke and previously had an ablation. Unfortunately his AF did return. To read about a 64 year old man suffering a stroke is heartbreaking. Obviously the choice is yours but make it an informed choice.
Simple answer, yes! As someone that has suffered a stroke from P/A/F at the age of 56 I am still taking them at almost 80 and I had being dependant on drugs any drugs but sadly they are keeping me going. To think I wouldn't even take an Aspirin for a headache when I was young!!!!!
Hi
I am reminded that when our daughter had worms I lined up the family.
All had it except for the husband.
He looked at me as I offered it to him on a spoon and poured it down the sink hole.
Within a couple years he was diagnosed with leukaemia, aged 40. He died at 61.
As a Brit he was little during the war. Somewhere along the way, Migrated to NZ at 11, he has been subjected to poisins/chemicals, asbestos selling and later fibreglassing he wanted to learn on our working honeymoon. No masks.
Funny how folks perceive what is bad for them.
cheri. JOY. 74. (NZ)
I have had 2 failed ablations so still have Afib. Regardless of that I would never ever give up taking my anticoagulant. And will take it for the rest of my life. You are still at risk. How do you know if you are not having short bouts of Afib in your sleep. What if you are asymptomatic and not aware of having an Afib attack. As Autumn Leaves has said, read Mrs Smiths post about husband and his recent stroke.
I had a few harsh PAF attacks and now infrequent and light at present …according to my pacemaker but I chose to take a blood thinner early as my father had a stroke and I saw him suffer for 7 years in a care home.
As part of my decision to go this way I also joined another long term trial studying the prophylactic properties of DOACs on dementia which is also another potential risk of AF possibly caused by micro emboli / mini clots.
As mJames1 says this is not a Yes No answer. To add to his thoughts, in the past I believe it was here, I read that stopping ACs after a significant period results in an increase in clotting risk; this seems common sense to me as a layman as the body's own de-clotting mechanism may have become dormant or something similar.
If I decided to stop taking ACs after 3 years I would certainly double down on natural products/ways that are I understand can reduce the risk eg garlic, krill oil, water, Nattokinnais, less sugar and exercise.
I think relying on garlic and krill oil to prevent strokes in a person with a history of AF when anticoagulants are indicated is a bit of an iffy recommendation.
Sorry didn't mean it to sound like a recommendation, just a measure to ameliorate the risk somewhat.
These ideas are probably fine for people with no history of AF who want to reduce their future risk, or as an addition to their existing strategies, but some people might see these ideas as an “instead of” option. That’s where it becomes a bit risky. Garlic has many health benefits and it makes food taste delicious, it’s rarely off the menu in my house, so everyone eat it by all means.
Secondtry: in the past I believe it was here, I read that stopping ACs after a significant period results in an increase in clotting risk; this seems common sense to me as a layman as the body's own de-clotting mechanism may have become dormant or something similar.
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I think what you may have read are standard warnings about stopping AC's, saying that clot risk may increase. Yes, it will increase in the sense that your risk will be back to where it was before you took them. But there is no evidence that it will increase any more than that, or anything to do with the disruption of your body's own de-clotting mechanism.
Jim
I’m also interested in this matter. I understand that AF is known to contribute to 1 in 5 strokes but I’m confused by the word ‘contribute’. Prior to the stroke do these people have no other comorbidities? Is the AF definitely the known cause? I have done so much reading around this, but I’m still not sure that I fully understand.
Great response.
One theory is that the afib episode itself increases stroke risk. The other is that afib is a marker for increased stroke risk, i.e. the company it keeps. Of course it could be both.
You might want to follow the REACT-AF trial which is just now enrolling. In conjunction with Apple Watch, researchers at Northwestern, Johns Hopkins and other major institutions are trying in part to answer questions like you pose.
Jim
I stopped taking them a while back as the Flecainide that has put an end to AF episodes comes with added fatigue etc and I don’t need any more “side effect” problems! But we are all different and you might not be bothered by side effects so must do what suits you. No doctor has questioned my decision so I had presumed they agreed.
Is it necessary to take anticoagulants for the rest of your life? Yes, a thousand times yes. They're your best friend. They don't thin your blood despite the daft name used by medics. They do reduce your risk of having a stroke.
Your replies to other people's posts indicate that you didn't benefit from Flecainide or Sotalol, and that you had a pacemaker fitted because you felt that drugs gave you a low heart rate. I put anticoagulants on the same level as pacemakers, there to prevent something worse, just as vital to you as your pacemaker.
I don’t often comment on here, however, on this I will. My 60 year old friend, had a heart attack a few years ago, recovered but had AF and was given anticoagulants. She always messed around with her medication especially her anticoagulant. Two weeks ago she had a massive stroke which has left her unable to speak, paralysis completely down her right side, has to be peg feed as great difficulty swallowing. Now looking to go into full time care. Everytime I go to see her it breaks my heart. Her husband and children are so lost without her. The Doctors have said if only she had been strict with her anticoagulant the stroke may not have happened. The stroke she had was from a blood clot not injury. This may have still happened, however, she didn’t give herself a chance. I carry my Apixaban where ever I go, it’s my best friend, I’m in AF.
Please discuss your concerns with your Health Care professional, me personally wouldn’t stop it, it’s your choice.
That’s absolutely frightening. I assume she is still only in her 60s. People don’t seem to understand the need for medication taken for preventative purposes. I see it on this forum all the time. There also seems to be an undercurrent of stigma or shame about taking medication and about having a diagnosed cardiac condition of any kind. We really need to kick this attitude to the kerb.
There’s a lot of moralising about “lifestyle” too, that if people choose not to take a wheelbarrow load of unproven supplements with unsupported claims and take meds instead then it’s some kind of moral failing. That’s just rubbish. People can take all the placebos they want but if they recommend people take overpriced, hyped up placebos instead of prescribed medications then it’s tantamount to spreading misinformation in my opinion. Besides, nobody should be taking “health” advice from random people on the internet.
Your friend’s experience shows just how harmful this “I don’t want to take pills” attitude is. Unfortunately it’s a very common attitude online. The decision should be made between the individual and the medical professional who is prescribing, not some bloke on the internet who comes up with a laundry list of supplements to take instead. Nor should people pay attention to the “biG pHaRmA” scaremongerers. They really seem to be everywhere online since the pandemic and are best ignored.
Risk is highly individual. “Random bloke on the internet” does not know anyone’s health history, family history, blood test results, scan results, other medical conditions or any of that. So they are in no position whatsoever to “advise” ANYONE. They aren’t the ones who are going to be around when something does happen to someone, they won’t even know, and they won’t be the ones stepping into the caring roles, or living with profound disabilities. Your friend’s story is just so sad.
Autumn: What an EXCELLENT reply!! I oft times pull my hair out reading here of some of the stuff folks swear by, AND think that everyone who has an ounce of brains should do likewise! I often limit my replies, as they sometimes can get a little snarky! Your's however, is a diplomatic masterpiece!
JimF, retired researcher for “biG pHaRmA”!
Thank you.
I couldn’t help it! This story is so sad and so tragic. Nobody WANTS to take pills and nobody WANTS a diagnosis of anything, but we can’t fantasise our way back to being 20 years old when we were at our physical peak. I am totally in favour of living a healthy lifestyle but it’s not a case of either/or. It can be both, but we have to be realistic about our risks and about our expectations and avoid indulging in magical thinking.
I think you should ask your GP about this. Generally, once AF strikes even a single time, given certain other boxes being ticked to create what is called your personal Chads2 score (such as age, blood pressure, etc.), then it is normal to need to take blood thinners (aka anticoagulants) for life.
This is, it seems, because the evidence is unclear why the risk of developing small blood clots arises in AF sufferers, and whether this is a direct consequence of the AF or not. It is known that the clots originate in a small pocket at the top of the left atrium called the left atrial appendage and that this comes in various shapes and sizes. Apparently, if this remnant of our foetal heart is the wrong shape, especially a "cauliflower" shape, then we are predisposed to the formation of "micro-thrombi" or minute blood clots, which can travel through the bloodstream to cause blockages elsewhere, including, of course, in the brain to bring on a stroke. The relationship of this to AF is not fully known., so the use of anticoagulants is recommended as a precaution.
There is an operation to close off this appendage, but it seems to be done only in the USA.
Steve
If AF doesn’t always show it self with symptoms so may have the risk & not know!
“Unfortunately, what often gets left out of these discussions is the fact that there is no blood thinner that decreases stroke risk without simultaneously increasing the risk of bleeding -- such the possibility of intracranial hemorrhage after even a minor head trauma. Omitting this from the discussion is doing a disservice to those trying to make a decision.”
Speaking as a regular contributor I think this statement is not only incorrect, it is doing a disservice to those who do their best to help members who tussle with this issue.
“So it's not if blood thinners are "necessary". The question is will the benefits of thinners outweigh the risks.”
At the time of my diagnosis, my online NHS surgery clearly refers to both HASBLED and CHADsVASC assessments and the results were discussed and jointly, the decision was made that I should be prescribed an anticoagulant. At the first review after each of my two ablations, an assessment was made regarding remaining on anticoagulants. Like the majority of UK members, I decided to remain on anticoagulants.
“This should be a shared decision/assessment between you and your doctor based on your CHADS risk score, your unique medical history, assessment of bleed risk and of course your preference.”
Absolutely correct and although some patients may have to instigate the process. Patients preference however might be based on emotion rather medical expertise, especially when emotions are roused by those who should know better. In any event, all patient can of course, refuse medication if their views have been influenced by others but they have to be prepared to accept the consequences of their decision
“In the US at least, many are allowed to stop thinners after a successful ablation, many are told to continue for life. Part of the decision is the patient's unique history, as well as ep preference.”
Not in a position to comment but having watched a few US videos on the subject, I’m not sure of the accuracy of this statement
“Ep preference often comes down to how they see the question -- Does afib actually causes strokes or is a marker for stroke? Certainly if the former, a properly monitored patient without afib after ablation arguably should be able to stop thinners. If it's the latter (a marker) then many shouldn't.”
“There will soon be a multi-center trial in the US in part addressing this very question. Until then, we unfortunately have to rely on what we know and questions like this will keep being asked.”
I have just watched a video produced by Dr Rod Passman in June this year at the same venue used by Dr Wolf where you would think there would be quite a following to hear what he had to say. There were around 15 well dispersed people in the audience and when it came to question time at the end, only two were asked from the floor and they may have been plants but I’ve added a link so that members can draw their own conclusions. It was interesting to hear that sensors may be used in lavatory seats to detect changes in heart beat.
You may think it’s unfortunate that we will have to rely on what we know, others may be eternally grateful particularly as the trial will take five years to draw its conclusions but like most here, I wish it well….
youtube.com/live/Qmouf0AkWr...
Jim (previously):“Unfortunately, what often gets left out of these discussions is the fact that there is no blood thinner that decreases stroke risk without simultaneously increasing the risk of bleeding -- such the possibility of intracranial hemorrhage after even a minor head trauma. Omitting this from the discussion is doing a disservice to those trying to make a decision.”
FlapJack (response)
Speaking as a regular contributor I think this statement is not only incorrect, it is doing a disservice to those who do their best to help members who tussle with this issue.
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I'll let others decide who is doing the disservice by incorrect statements. The links and excerpts below, are just two of many for anyone who wants to do their own research, which is highly recommended on both this and other topics affecting our health.
"... Intracranial hemorrhage is the most feared and lethal complication of oral anticoagulation. We review the frequency, predictors, and prognosis of this most common neurological complication of oral anticoagulation."
ahajournals.org/doi/full/10...
"A head injury is the most common cause of bleeding within the skull. A head injury may result from motor vehicle or bicycle accidents, falls, assaults, and sports injuries.
If you’re an older adult, even mild head trauma can cause a hematoma. This is especially true if you’re taking a blood-thinning medication or an anti-platelet drug, such as aspirin."
nchmd.org/health-library/ar...
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To be clear, I am not for or against thinners, because it would be crazy to be either without context. It's a matter of balancing risk versus reward, which should be a shared decision between you and your doctor.
As to your disparagements on Dr. Passman, regarding size of audience on Youtube video -- He was awarded a $37 million NIH grant to conduct a multi-center trial, in conjunction with Apple Watch and well respected centers like Johns Hopkins, to answer in part, questions like presented. I would hope people would welcome more research into a topic that affects all of us.
Jim
You’re right Jim, everyone will welcome improvements to the current situation, but because nothing is going to change for at least 5 years, I just think we should keep things in perspective. I don’t know you from Adam, but you always tend to respond to posts in an authoritative way, almost as though you are medically trained (which of course, you may be) and there are a huge number of “passive” members who could be influenced by what they are hearing. This is a concern shared by many medic’s because they know that for a variety of reasons, some patients are pursuing a pill in the pocket strategy without their medic’s knowledge or support. If, as I hope and am sure is the case, you have the patients best intentions at heart, surely it would be better to wait until there some results rather than assumptions to share …
I am mindful that I have may have failed to follow some of the rules of this forum but if I have prevented 1 member from making a mistake which could change their lives for worse, frankly I don’t care so I have reported my reply to admin…..
2 and a half years of NSR since my ablation to stop 2 and a half years of constant, persistent AF.
At my last chat 3 months ago with EP, he said due my CHAD of just 1 (due age 71) I could come off Edoxaban.
Happy to do that as I'm now completely drug free again (after 2 and a half years of cocktail of bisoprolol, aspirin, amiodoarone and sotalol)
Not even a statin.
BP 120/75. BMI 25, HbA1c 35.
After a life time of heavy coffee drinking I am caffeine free now, as that definitely fiddled with my heart rhythm a bit, post ablation.
hi I was interested in your post as I also am nsr for almost two years since my ablation I would like to stop apiciban and bisoperal but my consultant has said he would like me to keep taking them I was dissapointed as i thought I would come off the meds if ablation was successful
Quote "If I decided to stop taking ACs after 3 years I would certainly double down on natural products/ways that are I understand can reduce the risk eg garlic, krill oil, water, less sugar and exercise." End Quote.
I was on all those already when I was diagnosed with AF and I did not take the prescribed anticoagulants as I felt I was at risk of a bleed, 18 months later I had a major stroke and was completely paralyzed on my right side. I will stay on my anticoagulant until I die as I don't want to lose another piece of my brain. Just remember there is no way to get back the piece of brain you lose in a stroke.
All the best.
Roy
I stopped taking them since the Flecainide taken regularly has stopped episodes and I’m still here - no risk of stroke if not having any AF and the doc seems to accept that! Don’t want any more side effects!!
Blood thinners...
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