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Day 1. No anticoagulant

Olliel profile image
65 Replies

Hello,

I am participating in a trial which wants to find if DOAC can be stopped daily and used as needed after an ablation, which I had over 2 years ago for paroxysmal afib. You are monitored with a special Apple Watch and if afib returns, your watch notifies you and if it last for a certain amount of time, you will be instructed to restart your DOAC for 30 days. Then the cycle begins again. You do of course need to meet the criteria health wise before you are allowed to participate and selection is randomized after you qualify. Many healthy people after afib ablation already have their anticoagulant discontinued several months later-I only learned this recently from a few acquaintances that this has been true for them! The trial is called REACT afib if you want to read about it. I have been monitored by watch for the last month and have had no afib so I was notified today is Day 1 for me of no anticoagulant. Wish me luck. Years from now, afib treatment may change due to trials like this.

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Olliel
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65 Replies
mjames1 profile image
mjames1

Good luck! Very exciting and potentially could be a game changer!

I've been following that trial for sometime now. Did not end up enrolling for various reasons, but following the same protocol since my successful ablation,

Your watch is modified to be more sensitive to episodes, however between my Ultra2 Apple Watch and Kardia, I'm reasonably confident that I know when I go into atrial fibrillation.

For those not familiar, this is a US trial and not aware of anything similar in the UK or Europe. Participants are limited to CHA2DS2-VASc scores of 1-4.

Jim

FindingCaradoc profile image
FindingCaradoc in reply tomjames1

As someone with a CHADS2VASC score of 2 (soon to be 3 when I turn 65 next year) and still on Apixaban after a successful ablation (but who would much rather not be!) this trial is of great interest! Particularly as I remain very active and worry mainly about the bleeding risk of falling and banging my head. When are the results of the trial expected?

Jalia profile image
Jalia

This is an advancement . Not so long ago the general consensus seemed to be that, as there was no absolute cure for AF, once diagnosed there would always be a stroke risk whether in AF or not.

mjames1 profile image
mjames1 in reply toJalia

The foundation for the REACT-AF trial were several pilot studies that raised significant questions whether stroke risk continues without active atrial fibrillation.

They have been persuasive enough for many ep's, at least to be United States, to let their patient go off anticoagulation post successful Ablation.

The trial will test this thesis.

Jim

NewOne2023 profile image
NewOne2023 in reply tomjames1

I never understood why would a person need to stay on anticoagulant even if they don't have episodes anymore. Like why is the danger still present since there is no more fibrillation.

mjames1 profile image
mjames1 in reply toNewOne2023

There are two different theories based on opposing study data.

Theory 1 is that there is no relationship between the time of an episode and a stroke. Therefore everyone who has history of atrial fibrillation is at greater risk, regardless of frequency of episodes and timing. Some call it the "company it keeps" theory.

Theory 2 says that the study data that theory one is based on is flawed. And theory 2 have their own studies that show there is a relationship between the timing of an episode and stroke risk.

If you go by theory 1, then you would take daily anticoagulation solely based on your Chads score, even after a successful ablation. Theory 2 says there is no need to do such, and by takin daily anticoagulationcoagulation you're unnecessarily exposing yourself to a greater bleeding risk without any stroke reduction benefit.

The traditionalists are holding onto theory 1. But many doctors are now finding the data behind theory 2 more compelling. Personally, I believe in theory 2.

The multi institutional REACT-AF trial hopefully will give us a definitive answer. And that's why it's such an important trial.

Jim

NewOne2023 profile image
NewOne2023 in reply tomjames1

Thanks for some info. I only ask since I'm 41y, 14 months since first episode and 12 months since my last episode with cryo done 9 months ago and off all meds including apixaban since 6 months ago. Just wanted to understand why there is general consensus that we are still under risk of clots even if there arw any episodes anymore.

BobD profile image
BobDVolunteer in reply toNewOne2023

It was explained to me that the process of ablation changed the surface in the inside of the heart which could allow eddies to form and thus clots. I guess it depends how risk averse one is. With my record or five million to one events I'm very averse.

mjames1 profile image
mjames1 in reply toBobD

I guess it depends how risk averse one is

Not at all. It really depends on the study data. What you stated is simply speculation. And remember risk-averse works two ways. There is a stroke risk and there is bleed risk. If one wants to continue with anticoagulation once there is no reason to. That person is putting themselves at an adverse risk.

Jim

Desertflowerchild profile image
Desertflowerchild in reply tomjames1

Exactly - the risk goes both ways. and it always involves a cost-benefit analysis. Reasonable minds will differ. Last year I stayed off my bike for the whole year due to the risk of a crash and bleed. For me, the lifestyle cost is too high. If my afib burden (and therefore stroke risk) increases substantially, I will reconsider. I am hopeful, with my recent ablation, that my afib burden will remain very low for a few years. In making this decision, I also take into account that, while there has been a lot of afib in my family, the only stroke in my family has been hemmorrhagic.

ozziebob profile image
ozziebob in reply toDesertflowerchild

Yes, my risk analysis is obviously an individual equation and ongoing, but it is still totally dominated by the spontaneous chronic bilateral subdural haematomas I suffered in late 2016. If I ever start my prescribed apixaban, it will only be under a PIP regime and only if the current REACT-AF trial returns positive results for this approach. Otherwise I won't be starting anticoagulation. Also important is that I am 78 and my Chads2 is only 2.

Jalia profile image
Jalia in reply tomjames1

Thanks Jim. I have to admit that I would go along with theory 1 that you mention. However I can appreciate that a young person with maybe an isolated episode would not want to do this.

Ppiman profile image
Ppiman in reply tomjames1

I seem to recall reading a good while back that stroke risk was connected with the shape of the left atrial appendage, with the larger "cauliflower" shape being the most prone to clotting. There were ideas that this might not necessarily be directly related to AF incidence.

Do you know anything about this, Jim?

Steve

Goosebumps profile image
Goosebumps in reply toPpiman

I have heard this too from a well respected member of this forum and also directly from a patient that had their Left Atrial Appendage clipped during surgical ablation. The surgeon commented that the shape of their appendage was such that the stroke of risk whilst in AF was much higher. That patient is now off anticoagulants completely I believe.

Ppiman profile image
Ppiman in reply toGoosebumps

It's an interesting thing as I am sure few people will ever have their LAD looked at. It seems to have been a piece of research that has been forgotten about.

Steve

Buzby62 profile image
Buzby62

I came off anticoagulant after my ablation (see my bio) I think partly because of the ablation and partly because I didn’t meet the score anyway and was put on them as a safety measure during the pandemic when appointments were difficult.

I monitor myself on Apple Watch and any sign of prolonged AF and I will be asking the question. My only concern for less observant trialists is the Apple Watch won’t catch all AF and can miss some before the AF alert kicks in. I wonder if you have a specially modified watch that will alert as soon as any increase in HRV (Heart Rate Variability) is detected. The standard alert for possible AF can take up to 5 background checks over several hours with irregular beats before an alert. I keep a close eye on my HRV history and that gives me the confidence that I haven’t had any AF as a spike in HRV is always present with AF.

Best wishes

mjames1 profile image
mjames1 in reply toBuzby62

The watch is modified to pick up episodes real time. I can understand why that is necessary for the trial, but personally, I'm very confident that I know when I'm in atrial fibrillation and when I'm not. HRV and sleep function HR data give complementary information to what the normal Apple Watch does. But the modified Apple Watch using EKG data.

Jin

Buzby62 profile image
Buzby62 in reply tomjames1

Same here Jim, interesting stuff though.

Bumpitybump profile image
Bumpitybump

Thank you for taking part in the research - excellent! I hope you gain first and foremost but want to acknowledge what you are contributing to others in the future too, good on you!

mav7 profile image
mav7

Thanks for posting,  Olliel May I ask if you are in the US ? Pls keep us updated.

The following is an excerpt from the HU Link StopAfib.org on REACT. Select group.

.You are not eligible if you:

have valvular or permanent afib

have had afib of greater than 1 hour/month in the past three months

stopafib.org/afib-news-even...

Like all studies, REACT will not be completely definitive. Individual characteristics/factors will take precedent.

Encourage all to research data for stroke prevention vs major bleeding when taking anticoagulants especially for those in their 70's+.

Interesting. Before I was on the list for an ablation, my consultant was already using this protoocol.

mav7 profile image
mav7 in reply toSixtyslidogirl

Good point Sixtyslidogirl Likely many doctors also do after considering the patient.

The cynic in me wonders if Apple is funding this study.

mjames1 profile image
mjames1 in reply tomav7

The cynic in me wonders if Apple is funding this study.

The trial is fully funded by a $38 million grant from the National Institute of Health (NIH), an agency of the US government. Apple is supplying the watches and newer technology since current watched do not detect a fib real time.

Save your cynicism for the majority of anticoagulation trials, which are funded by the pharmaceutical companies themselves!

Jim

mav7 profile image
mav7 in reply tomjames1

No one should be prescribed unnecessary medications. This study will be a key data point. In the end it will be a patient/doctor decision based on the patient's characteristics/factors.

Slidogirl and other forum members have previously indicated their doctors already followed a similar protocol after a successful ablation/maze procedure or the absence of afib for a certain period.

Your previous critique of anticoagulants and beta blockers is well documented among your informative posts. From your posts, your afib journey has been very mild compared to many with minimal symptoms and less need for medication which is commendable and envied by many that depend on drugs for control/prevention.

May you have continued NSR/no flutter after just one ablation.

secondtry profile image
secondtry in reply tomjames1

Apologies for being cynical again but from what I read government and Big Pharma are far too close for me in the UK. The NIH in the US may receive grants from BP for this trial or more covertly because of this trial.

It remains to be seen whether Trump's new 'Health Generals' in the US can change this situation - I am quite optimistic that some confidence will be restored there first.

Peony4575 profile image
Peony4575 in reply tomav7

If this was widely adopted it would save state funded health services a fortune

Lenlec profile image
Lenlec

excellent information. Thank you. Really interesting

OzJames profile image
OzJames

interesting as this is what my Cardiologist has me on. Mind you I’ve not had an ablation but when I go into AF as alerted by my watch I start apixiban for 30 days even if I went back into Sinus after a few hours of AF. Been on that regime since August 2022

Peony4575 profile image
Peony4575 in reply toOzJames

That seems sensible . My episodes so far have been two years apart and yet I am anti coagulated everyday . Am glad to see this being taken up more widely

BJ24 profile image
BJ24 in reply toOzJames

how does your doc justify that regime that you described when the instructions for eliquis warn about stopping it? I do think that what you described sounds pretty reasonable for those of us with PAF.

OzJames profile image
OzJames in reply toBJ24

I think from what he says you need to be on anticoags for a long time before you have to be careful and taper off. In my case a month is not considered a long time. He suggests that a clot can start to form after a couple of days in constant When I’m in sinus he has me on daily mini aspirin after the 30 days of apixiban finishes

Sacstate profile image
Sacstate in reply toOzJames

This is exactly the regimen I follow. I am male, 78, very aerobically active, otherwise very healthy, now eat 100% plant based. No Apple Watch, no ablation, but I can feel any arrhythmia and know instantly when I experience AFib. Afib diagnosed about three years ago with a couple of episodes lasting several hours. After starting metoprolol and Flecainide, had one breakthrough episode lasting 2 hours early on and one about a year ago lasting 2 hours but nothing more other than occasional few-second spurts that may or may not be AFib. After the first episodes, I significantly improved my eating/exercise/meditation practices toward better health, and it has paid off in wonderful ways. Still, because of all the insistence that anybody diagnosed with AFib should be on anticoagulants, I went ahead and ordered them, since cardiologist advised to take them or not take them, my choice, and I have them handy in case of an episode lasting, say, 15 minutes when I would then take one as a PIP and continue for just 30 days if no more episodes occur in that time. Cardiologist prefers that I take regularly starting 3 years ago but still blesses my current regime. I have yet to take a single anticoagulant and am pleased with that.

OzJames profile image
OzJames in reply toSacstate

Ive been exercising my whole life and initially felt the AF 31 years ago and since only got an episode every few years till they became more frequent in 2022. A total of 10 episodes 4 of which have been since 2022. I still believe there’s different types of AF. It could be the few minutes you feel could be just ectopics. An Apple Watch is a good investment for the alerts it provides. I have felt each of my episodes though the last I felt I thought was ectopics till I got watch alert.

Fannyphasbees profile image
Fannyphasbees

How interesting. I had cardio version on 26/11 and saw my GP yesterday for another matter and asked him about remaining on anticoagulants since my afib occurred in March and I’ve been fine since cardio version . I would love to come off warfarin. He has advisor wait and discuss with cardiologist at the phone review in a few weeks. I take carbamazepine hence take warfarin.

ozziebob profile image
ozziebob in reply toFannyphasbees

I think I mentioned before that my brother in Australia successfully takes his carbamazepine together with a DOAC after being switched from warfarin by his medical team. So if it's just the warfarin you want to stop, and not all anticoagulation, I would think you do currently have the DOAC option. You might ask about it during your phone review. All the best.

Fannyphasbees profile image
Fannyphasbees in reply toozziebob

Thanks I will ask when they Review name.

JFJ131 profile image
JFJ131 in reply toFannyphasbees

Just for info and comparison, I also started Afib in March/April time and had cardioversion just in October. All ok since then - fingers remain crossed. I just saw my cardiologist today and he said to stay on anti-coags for 12 months and if no further episodes we can then discuss coming off Apixaban.

Fannyphasbees profile image
Fannyphasbees in reply toJFJ131

Thanks for your response. I hope it remains successful for you. I’m so pleased so far. Have a nice Christmas. 🎅

JFJ131 profile image
JFJ131 in reply toFannyphasbees

Same to you - continued sinus rhythm and a good Christmas!

Peony4575 profile image
Peony4575

well done Ollie and hopefully won’t need any luck ! Please keep us posted as to your progress

Jimbobarelli profile image
Jimbobarelli

my cardiologist does not want to put me on AC. He seems to think my PAF , my age and fitness , plus general good heart health , means ACs provide as many risks as they do solutions. Seems my stroke risk is 0.6% versus 0.3% for someone like me without AF . What was interesting was that the stroke risk seems to be the same for people in proxymal or persistent AF

southkorea profile image
southkorea

well done!! I have had 2 ablations and now only have AF around twice a year. I hate being on blood thinners and have often thought it would be good if I only had to take them when I had an attack. I do hope this trial works !!

AfibSufferer profile image
AfibSufferer

I'm currently on the same post ablation regime too (if I get AF I'm instructed to start taking AC). I'm in the UK and this regime was agreed with my cardiologist.

Fullofheart profile image
Fullofheart

I guess my cardiologist must be a theory 2 as I've been off all meds (Inc anticoagulant) since reverting to NSR 5 months after ablation. My Chad score is 1 (female) and he felt bleeding risk outweighed stroke risk. The trials sound interesting. I'd be curious about the results. I guess it's a longitudinal study so it might be some time until the data can inform practice, but I'll keep an ear and eye out.

Riccyticcy profile image
Riccyticcy

Thank you Olliel for your selfless contribution. I guess the risk is deemed fairly low otherwise ethically it’d be dubious? But taking any extra potential risk voluntarily is much appreciated. And thanks to other posters for the effort made on some very informative posts.

I took a tumble the other day in rural Indonesia on holiday and my ‘fall technique’ managed to minimise head damage but i still had a few anxious days!

Fifine profile image
Fifine

Hi Ollie,I was very interested to read your post as 8 months post first ablation for paroxysmal Afib my cardiologist is considering stopping the anticoagulant next May if all goes well.

Let us know how you get on.

All the best.

Libby22 profile image
Libby22

What an interesting trial. Thank you for taking part. Although the risk is small, it's still a selfless thing to do, to help others. I hope you help to prove that the continuation of anticoagulants after a successful ablation is unnecessary.

Singwell profile image
Singwell

Well done for being a participant! Yes, we need this research. Maybe ask what your stroke risk score was? I'm guessing no more than 1.

Vonnegut profile image
Vonnegut

I haven’t taken anticoagulants since Flecainide taken daily has put an end to episodes of AF. I haven’t had an ablation but was told by an EP that unless a period of AF continued for long with a high heart rate, I was not at risk of stroke- still here at 80!

opal11uk profile image
opal11uk

Good luck with the scheme, I would just add that not everyone who has ablation can then live without anticoagulants or drugs

lynwest profile image
lynwest

I had adverse reactions to 3 anticoagulants and went back to Aspirin which had brought me round from a Stroke in 3 days in 2009. I had been on 1 Aspirin a day ever since until I was told I had AF. I was put on anticoagulants - Edoxaban, Apixaban and Rivroxaban - which made me ill. I have recently had a Pacemaker check and was told I had only 2 episodes of 1 minute each in the last 12 months. These new coagulants don't agree with everyone and I seem to be OK with Aspirin which has saved me in the past and does not seem to be causing AF now.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

hi

I mentioned this years ago. But they hadn't done a trial.

PIP for very spaced AF seemed logical. But why 30 days after. Could a clot be circling around for that long!

i am in rapid under control and persistent AF. I had a stroke with AF in 2019. But the thyroid cancer caused the AF which caused the stroke. I was not on amy meds at the time.

cherio JOY. 75. (NZ)

BJ24 profile image
BJ24

Can you cite the name of the study so that I can let my doctor know about it? Sounds very interesting!

ozziebob profile image
ozziebob in reply toBJ24

Here's a link to the current REACT-AF trial being undertaken in USA on a PIP approach to anticoagulation ...

clinicaltrials.gov/study/NC...

ozziebob profile image
ozziebob in reply toBJ24

And here's an article that provides the background for the REACT-AF trial. One of the authors is a director of the trial ...

“Pill‐in‐Pocket” anticoagulation for stroke prevention in atrialfibrillation

onlinelibrary.wiley.com/doi...

john-boy-92 profile image
john-boy-92

That's interesting. I see that this is a US trial without a parallel in the UK and Europe. Could you provide a link? I'm a stroke lived-experience person with AF, and I comment on the studies and trial protocols of a number of UK universities.

ozziebob profile image
ozziebob in reply tojohn-boy-92

Here's a link to the current REACT-AF trial being undertaken in USA on a PIP approach to anticoagulation ...

clinicaltrials.gov/study/NC...

ozziebob profile image
ozziebob in reply tojohn-boy-92

And here's an article that provides the background for the REACT-AF trial. One of the authors is a director of the trial ...

“Pill‐in‐Pocket” anticoagulation for stroke prevention in atrialfibrillation

onlinelibrary.wiley.com/doi...

john-boy-92 profile image
john-boy-92 in reply toozziebob

That's great; thank you.

manabouttown profile image
manabouttown

Ollie,well done for agreeing to participate in this trial. Please keep us posyed with how you are getting on.

Olliel profile image
Olliel

Thank you all for your support and good wishes. And I’m excited to see how many of you are already off your DOAC. You seem to be ahead of us here in the US and your stories help me feel good about this. I did lots of research about various other trials and their conclusions and thoroughly discussed with my family and cardio before deciding. I’m also with a healthcare background. Yes, I did have to meet the requirements to participate -CHADs, general health and cardio testing. I already had an Apple Watch capable of doing an ECG but after ablation was surprised that I wouldn’t be going off my anticoagulant and when my EP mentioned this study I thought it would be right for me. My watch provided by them is linked to my phone too and both send me messages and I have done 2 questionnaires. The face of watch gives me messages on anticoagulant use and days without afib which I guess will change if something does! 🤞🤞 Good health to all and Happy Holidays

Fblue profile image
Fblue

fabulous all the best to you. This is progress. I think anticoagulation is done without much thought to the individual situation. this is a great step for patients!!!

CabanaBoy profile image
CabanaBoy

Interesting. As strike is the big risk with AFib I question if stopping the anti coagulants will be a wise move. I also wonder who is sponsoring such a study. Eliquis/Apixiban has been a game changer however the brand name meds are expensive. Generic is less expensive, with most drug plans supporting it. Also, it takes a few days with these to be effective at preventing blood clots so when an AFib episode occurs there isn’t any protection.

ozziebob profile image
ozziebob in reply toCabanaBoy

"I also wonder who is sponsoring such a study"

If you read the Replies, you will see mjames1 has already answered this above.

Olliel profile image
Olliel in reply toCabanaBoy

No generic available in US so my co pay is >$100 per month-this never influenced my decision, though. And according to Elequis/chat gpt, yes, 1 dose has an effect right away on factor x for those of you who understand that stuff 🤔🤔. Full benefit after several days

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