Life long anticoagulation

[Peony4575]

This months Dr John Day’s newsletter about research into strokes and lifelong anticoagulation . There is an extract below but the gist is the suggestion that the stroke risk has been overestimated particularly in women and the elderly

[Ppiman]

It’s one of those things that most likely do because the word “stroke” strikes such fear. Taking anticoagulants certainly makes many common age related surgical procedures far more risky (in men, prostate surgery, first example).

Steve

[Peony4575 in reply to Ppiman]

Indeed Steve . But anti coagulants can also cause haemorrhagic strokes , particularly in the elderly . Obviously trials powered by drug companies are always going to be slanted in the direction of as many people as possible taking their product for as long as possible

[Ppiman in reply to Peony4575]

Having worked in the industry and with trialists, I am less cynical about this - but I’m not naive to the possibility of over-prescribing. The reality is that the utterly life-changing and often devastating impact of a stroke is such that prophylaxis has long been considered worthwhile, originally with aspirin.

Steve

[Peony4575 in reply to Ppiman]

Totally agree if a person is having frequent AF , but for someone like me currently having AF after more than two year gaps I think there needs to be some flexibility in approach or the risks may outweigh any benefits

[Ppiman in reply to Peony4575]

I’d forgotten that and, yes, fully appreciate your point. The argument is yet more complex as, it seems, the clots form mostly in atrial appendages of a certain shape, which most don’t have.

Given the enormous cost of anticoagulants I’m surprised more work hasn’t been done - and that’s where cynicism might be justified, I suppose?

Steve

[Peony4575 in reply to Ppiman]

If that’s the case maybe scanning may be possible in the future to determine who is at risk . It is certain given the expense of our NHS ( we are like a health service with a country attached) that the massive prescribing for all sorts of chronic health condition s must be looked at, and more onus for prevention put on the individual

[Ppiman in reply to Peony4575]

Well said (and put very well - it made me smile).

Steve

[Peony4575 in reply to Ppiman]

😊

[meadfoot]

As with all things medical time and research changes medical opinions and actions. One day in the dim and distant future treatments like ablation may well be deemed as unnecessary and even barbaric.

Burn or freeze areas of the heart, did they really do that! As it is we are where we are and can only act with what is known at any one point in time. An interesting article though.

[Peony4575 in reply to meadfoot]

I agree . Will be how we look back on blood letting and leeches

[CDreamer]

Interesting but as was said - a lot more questions to be answered so can’t see anything changing, anytime soon.

[Peony4575 in reply to CDreamer]

I think change is underway .

[secondtry]

Thank you for highlighting that study. Just from what I have read and concluded I have suspected that ACs have been over prescribed on scanty research evidence. The study you mentioned I believe is much more substantial than the 'x5 more likely to have a stroke' study that is ancient but still carries opinion.

My suggestion to those considering ACs is that it is a much more nuanced decision, read up on any study you can find, consider the European cardiac authority guidance, have a frank discussion with your trusted medic taking into account any comorbidities and then follow your gut feeling.

[Peony4575 in reply to secondtry]

It was a particularly good newsletter , he also did a feature on when to have an ablation, and studies showed sooner, ideally within a year of diagnosis , gives the best and most long lasting result .

I think it’s good that the research is being done into ACs , someone like me who to date as had 3 AF episodes averaging two years apart is taking a risk every day with the AC , but am sticking with it until the ablation because they want me on an AC for the ablation . If it goes well the professor wants me off a couple of months later .

Millions of people around the world with AF, as with other chronic diseases the cost of the drug budget is massive

[Lilypocket in reply to Peony4575]

Hi, may I ask why with so few episodes you are considering an ablation? Are you very symptomatic or is it a case of knocking its progress on the head so to speak?

[Peony4575 in reply to Lilypocket]

Both . My episodes last 24 hours HR 187 with RVR can’t tolerate some of the drugs but none of them seem to work. Why wait until I am older and my heart has been knackered by repeated bouts, and living with the uncertainty of when and where it might happen. I don’t want to be taking drugs everyday . Best chance of success is sooner rather than later, am absolutely terrified but am having a GA . Ablation is a risk, not having an ablation is a risk

[Lilypocket in reply to Peony4575]

Yes a rock and a hard place. Can I ask what age you are ( or you can pm me ,) and what meds you take?I certainly don't regret my ablation. It was a bit rocky after but the actual procedure under GA was a doddle . It is not surgery but more a procedure I believe.

I went from 180 episodes a year to 6 last year ( after 2 years free). I am off all meds apart from anti coags and a pill in the pocket ( Sotolol).

I agree sooner is better than later . I left it very late as I had a cardiologist who never mentioned there was an alternative to medication. I learnt about the procedure on this forum!

Take care

[Peony4575 in reply to Lilypocket]

Am 69 and only take Edoxaban and HRT. My cardiologist bless him tried to talk me out of it and pushed the medical route, but on one of my admissions during an episode a young dynamic EP was the cardiologist on duty and she put the case for the ablation route which hadn’t been mentioned before . My left atrium is a teeny bit enlarged and I thought am not hanging around waiting for more damage and more episodes

[Lilypocket in reply to Peony4575]

Sounds reasonable ! It's good to try other options. My left atrium is enlarged after 12 years of Afib but hasn't affected my EF yet. And my BP is good .Have a lovely ( sunny?) day!

[Peony4575 in reply to Lilypocket]

You too. It’s sunny but bitter here . But the golden retriever wants out regardless so nothing for it but to wrap up !

[HGates in reply to secondtry]

It does seem to be the case that time & time again the efficacy of anticoagulants demonstrated in the Pharma-sponsored drug trials are seldom reproducible when studied in secondary settings. I think this is one of the main reasons EPs find AF so perplexing. Every time they think they’ve nailed down the basic ‘laws of AF’, somebody conducts a study to test one of the hypotheses & it doesn’t give them the answer they were expecting.

[Peony4575 in reply to HGates]

And pharma sponsored drug trials typically don’t go on for a long time . My EP when saying he would like to take me off said take an AC long enough and sooner or later you will run into trouble with it. I know the howls of outrage that will greet that statement but I guess he sees all the ones where it goes wrong

[HGates in reply to Peony4575]

I think Ppiman is correct when he says that fear plays a key role. I’m certainly not anti anti-coagulants but I do think, like many drugs, they’re over-prescribed & recent studies like the LOOP study as well as NOAH & Artesia are making more thoughtful EPs question the dogma.

[Peony4575 in reply to HGates]

Indeed. And it will be interesting to see what develops . A problem is medicine is so protocol driven these days it’s very much a one size fits all approach. And if doctors deviate from the protocol and something goes wrong they are in trouble. So they need a body of evidence and to move like a herd, even a small breakaway herd . But as you say it is being questioned, studies are being done to back up a new position and the tide is on the turn

[Auriculaire in reply to HGates]

None of the DOACs were studied in relation to placebo in the clinical trials but in comparison to Warfarin for non inferiortity. So the assumption that an anticoagulant was necessary was there from the off. I have always found it very suspicious that the CHADS2VASc score (which resulted in many more people being put on anticoagulation for life than the old CHADS score ) came out just about the time when the vastly more expensive DOACs were coming to the market.

[Peony4575 in reply to Auriculaire]

I think you are right to be suspicious . But when doing trials you have to get the plan past the ethics committee and the assumption might have been that patients put on placebo were being put at risk of a stroke . So while this played right into pharma hands , I would guess this was the justification . I think there has been a lot of over medication. I know doctors socially with very occasional PAF who don’t take ACs

[Auriculaire in reply to Peony4575]

That is right - it would have been deemed unethical. But there were shenanigans in one of the DOAC trials - in the part of the trial carried out in China I think for Rivaroxaban - involving problems with the machines used to measure INR for those in the Warfarin arm. Subsequent studies have shown that for people who can keep their INR in range 90% of the time Warfarin is just as good. I am glad the CHADS2VASc is starting to be questioned. It also comforts me that my somewhat unorthodox use of Apixaban is maybe not so risky after all!

[Peony4575 in reply to Auriculaire]

I think it’s good to question and be suspicious, and indeed take the course of action you feel right for yourself. Am only taking the AC continuously myself because am on waiting list for ablation , which although going to be 18 months or so, you never know if there’s a cancellation and they want me on it for the procedure

[Auriculaire in reply to Peony4575]

I take Apixaban continually too, but I vary the dose as I cannot take the full dose - the side effects seriously affect my QOL.

[Peony4575 in reply to Auriculaire]

Sorry to hear that . I haven’t had any side effects I am aware of with Edoxaban so far but there are obviously reasons why they check your liver, kidneys, blood cell count etc . Can’t see it doesn’t mean it’s not happening

[CDreamer in reply to secondtry]

As my cardiologist recently commented - if you are the minister of health it makes sense to recommend blanket coverage on things like statins and anti-coagulants - if you are an individual with lower risk factors it may not make sense.

[BuckleyBoy]

I've been on Warfarin for 8+ years. I've had a few minor injuries which result in whole limbs turning black & blue, which shows how powerful they are. Makes wonder what would happen in my brain if I banged my head! My PAF seems to have become less over the years; my Apple watch says AF burden is @ 2%. Should I consider dropping the Warfarin now?

[Peony4575 in reply to BuckleyBoy]

I sympathise but I am absolutely not qualified to offer any opinion on that question. You need to discuss it with a cardiologist

[ozziebob]

There's also an interesting Feb article by John Mandrola in Medscape about declining stroke risks and related questions around anticoagulation as follows (sorry, not allowed to give a link, but a search on the description I give will find the article) ...

Do We Really Know the Stroke Risk From AF?

John M. Mandrola, MD

[Peony4575 in reply to ozziebob]

Many thanks for that, I will see if I can get it

[Desertflowerchild in reply to ozziebob]

The statement that shocked me in Mandrola's article was that the CHA2DS2-VASc score resulted from a study involving only 1000 patients and 25 stroke events. I would think there must have been several more robust follow-up studies (didn't look though).

[mjames1]

An exerpt in case the source link is removed:

"What Does This All Mean?

While this is just one study, it’s an important piece of the puzzle. Scientific conclusions become much stronger when multiple studies all point in the same direction.

The findings suggest that AFib-related stroke risk may be decreasing over time, even as the population ages and accumulates more risk factors. This challenges the idea that women and older people with AFib inherently have a much higher stroke when it comes to AFib.

Could it be that previous studies overestimated the stroke risk in women and older people with AFib? Or is something else at play? With smartwatches and better awareness, many people are getting diagnosed with AFib earlier than ever before. Advancements in early detection and treatment may be reducing stroke risk across the board, making AFib less dangerous than it was two decades ago."

[Fblue]

Thanks so much. I will be bringing this article to my doctor and looking up the other studies mentioned on the string. A question I have is if we decide to stop, how do you do it with that black warning, saying, the drug itself can cause clots, stroke or heart attack. I find that very frightening and very under appreciated doctors with some doctors using the DOAC’s as pill in pocket and I guess it doesn’t happen often?

[Peony4575 in reply to Fblue]

We aren’t allowed to answer that question unfortunately . If I were you I would ask your pharmacist if, for example , you are able to cut the tablet up and reduce the dose more slowly as you can with many medicines but you would need to ask the pharmacist I don’t know . Yes I agree people seem to stop and start for operations etc all the time

[Franny50]

I was 73 when I had an afib induced stroke after 13+ years fighting afib, because I resisted taking an anticoagulant. I was taking the antiarrythmic drug Tikosyn, and actually had long stretches of NSR, so I was convinced I didn't need anticoagulation. But right before the stroke I was in afib for 3 days straight, and then it stopped abruptly, as it always did. And then the same day the afib stopped I had a stroke while shopping, which landed me on the floor and helpless.

The first couple of hours I was unable to speak, and spent a few days in the hospital under observation, but apparently there are no long-term effects.

My EP had warned me, but I was stubbornly sure that all the vitamins and supplements, including fish oil, etc., would protect me. But I was wrong. My EP said I was very, very lucky because strokes caused by clots released from the left atrium can often be deadly, as the clots can be large and plug up larger arteries in the brain. For some reason I have a gigantic left atrium. I don't know if that was a factor.

I have never liked taking Pharma drugs, and thought over the years that anticoagulants were over-advertised here in the U.S., like so many other drugs. But in my own case I know now that I was badly mistaken. I am on apixaban for life now, despite having had a recent pace and ablate procedure. My atria are still fibrillating away, which means they could still release clots into circulation, but my ventricles are controlled by the pacemaker.

I am just relating this as an anecdote. I have read Dr. Day and Dr. Mandrola for years, and believe that they make an honest effort to get helpful information out. Over the years the medical orthodoxy has evolved, as it should, but now I am much more cautious about taking risks.

[Peony4575 in reply to Franny50]

I am so sorry that happened to you . I think virtually everyone is agreed that if you are in AF or having frequent AF you should be on an AC . Having an enlarged left atrium is an extra risk factor for a stroke . The main cause are AF and hypertension. . You were very lucky . We are talking here about people following their EPs advice . Glad you are ok

[CDreamer in reply to Franny50]

I had a similar experience - TIA after stopping anticoagulants after having 12 months of no AF following an ablation. I think we always need to assess the greater risk - bleeds:clots and this is what happens for surgery. I am stopping anticoagulants for 6 days for surgery - 3 days prior, three days following. Cardiologist feels I am low enough risk but just keeping fingers crossed I don’t go into AF.