Hi. I wondered if anyone could give me someone with more knowledge than me about anti-coagulation could give me some perspective please. Newly diagnosed with paroxysmal AF. Have been max 5 eps a year all resolving with max several hours. My Chads vascs (spelling?!) score is 2 so cardiologist has prescribed Endoxaban. Probably due to the shock & worry of being diagnosed I have managed to get myself in a right tizzy about having a major bleed. I know it reduces the risk of stroke but does anyone take the anti-coag on onset of an episode rather than all the time or is that ridiculous? Apologies for sounding slightly neurotic but I’m really scared!!
Anti-coag query please : Hi. I wondered... - Atrial Fibrillati...
Anti-coag query please
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does anyone take the anti-coag on onset of an episode rather than all the time or is that ridiculous?
Not ridiculous. It's called PIP (pill in pocket) anticoagulation and Northwestern University in the United States is running a multi Center trial to help answer that exact same question.
Google "REACT-AF" for more information.
The trial is based based on a growing body of evidence that the anticoagulation decision is not as simple as what your Chads score is, but may be based on other factors such as frequency and duration of afib episodes.
Trial aside, many doctors, including mine (we're in the US) are already factoring afib frequency and duration into the thinner decision. A great discussion to have with your doctors.
Jim
Advice in US and UK is considerably different and PIP is not advised in UK - period.
We are an international forum here and I was not offering any advice like some others. Just information and personal anecdotes. The decision should be between you and a trusted doctor. I don't care what country you're in.
Jim
These studies are being done, not just for sound medical information, but because many cannot afford the cost of daily anticoagulation and then choose to go without so they can eat or have heat in their house. In the US, the system is broken and pharmaceutical companies take advantage of this. We can't afford $450 USD a month for Eliquis. No chance of a generic until November of 2026 here in the US. This is about saving lives.
On another note, I have asked both my cardiologist and EP and they seem to not know this may be an option. Truth or on the side of the drug companies.
One of the studies I read was "pill-in-pocket" anticoagulation for stroke prevention by Peigh-Journal of Cardiovascular Electrophysiology-Wiley Online Library.
It requires the use of a fitness watch or cardia report to the doctor that you are in AF and then you take the anticoagulant for several week afterward. It will not work for everyone, but for proper treatment is better than no treatment.
that is what my EP also said: several factors, age, frequency and duration. For me I was under the age required but am getting close to 75. Yet, the frequency for me has lessened. I am commenting on this to say, it is still all a huge mystery.
Anticoagulants do not cause spontaneous bleeding, they cause slower clotting with in my experience more friable clots so less likely to get a biggie landing somewhere it’s going to cause a lot of damage. If you wound yourself you take the usual first aid steps for longer but if bleeding continues hospitals can deal with it, also with major bleeds. Any bangs on the head causing any symptoms require a trip to A&E for a scan but I have survived a fall on my forehead, a garage door dropping on my head and a fall against a doorpost with no brain bleed so it doesn’t seem something to worry about too much. However even a minor stroke can be a life changing injury. There is a school of thought that it might be ok to take the anticoagulant as and when if you recognise the start of an episode but I’m not going into that. Hope this helps.
I can't fault your advice but it's worthwhile looking at it from another perspective. People with atrial fibrillation have 3 to 5 times greater risk for ischemic stroke. I have paroxysmal AF but CHAD VASC Score is zero, so I'm not on AC.
So despite supposedly having a 3 to 5 times greater risk of stroke, I'm not on AC because the risks associated with taking AC are assessed as greater than my stroke risk. What does that tell you about the risks associated with taking AC. To me, it means the risks are not insignificant and I'd be discussing my specific circumstances with my health professional, including asking my favourite question, if you were in my position what would you do (and why)?
I had not thought of it like that, more that it’s prescribed to those whose risk is considered greater - all medications have a trade off including cost so there comes a time when the risk of harm from not medicating tips the balance against over medicating.
I go in and out of AF every day, some days its many times. Ive been like it for most of the past year. It seems drugs so far after several years have not helped much. When i had a dual wire pm implanted i was to have had an AV ablation. Once the PM was in place i was passed over to another cardio who said i didnt need it. Now after 3 years my doc and i have been discussing my anticoag situation and also the possibility of having the av node ablation idea looked at again.Does anyone here know if if anticoagulation tabs would still be necessary after the node ablation ?
I have heard thst the afib still continues but is not felt. Someone here
with that experience at all.
Colin in NZ
I've been on Xarelto for 14 years. A few years ago, a grating on a deck failed and I cut my shin to the bone with a really messy laceration about about 6 inches long. I bled a LOT but we were able to staunch it in the field with pressure and paper towels. When I went to urgent care the laceration was so bad they couldn't close the wound so I had to go to an expert. Fortunately they really were an expert. I got it sorted out, and though I had to be quite careful with wound care until it completely healed, I'm fine now. I was quite scared at first that I might bleed out since I was 45 minutes at least from a hospital. But regular first aid procedures to staunch bleeding worked for me. And they should work for anyone.
Hi Joey
I see that you are in the UK and here it is generally recommended that we all take anticoagulants. The fact is some people can have silent AF (when they're not aware that an attack is happening). We rarely read on this forum of people having bleeds from taking anticoagulant pills, so I would guess that they are not overly common.
A member on here CDreamer will hopefully tell you her story of how she decided she wouldn't take anticoagulants and then had a mini stroke. That's what we all fear if we don't take a pill to protect us from that, like your Edoxaban. That's why we take anticoagulants to protect us from strokes.
I've been taking an older anticoagulant called Warfarin for more years than I care to remember and will continue to do so. Yes it's an old medication but has been used for around 60-70 years.
Feel free to ask any more questions you may have.
Jean
I'm one who is pro the correct anti coagulant. I have familial PAF, my father, my 4 sisters and I all affected (that I know of). One of my sisters was admitted in the UK for a gall bladder op - they discovered in hospital that she had AF- they could not get her HR down and sent her home, unoperated on, with a packet of Aspirin. Three months later she had a stroke, not sufficient to disable her, but a stroke, nevertheless. I will refrain from repeating the rest of her story !
Sorry to hear that about your sister and understand why you wouldn't want to say any more.
Hi Jean,
I’m taking Eliquis, a newer blood thinner. Have you any had any experience with that one?
Hi Cheri,
I hope you don't mind my replying before jeanjeannie50 , but all the research I've read gives apixaban (=eliquis) lower stroke and bleed risks than the older warfarin (=coumadin) anticoagulant. However, some patients still prefer warfarin either because of their familiarity with it, or because their body cannot tolerate the side-effects of the newer DOACs.
bob
No sorry Alli, I've only ever taken Warfarin (Coumadin). Have taken it for many years and see no reason for change. It's been around for almost 70 years and the newer ones I believe about 10. I'm afraid I'm not overly confident about new anticoagulants. My AF nurse said she thought she'd never change from saying Warfarin was the best, but then changed her mind after hearing all the good reports about Eliquis.
Jean
Thanks for the info. Always good too hear from you!
BobDVolunteer
In UK intermittent anticoagulation is not currently accepted or recommended. Anticoagulants are often called blood thinners which causes some confusion. They do not thin blood at all so spontaneuous bleeds are not likely and you would still need an injury for bleeding to take place.
I have been on warfarin ( the original anticoagulant) for twenty years now , do wild gardening, play with chain saws, build racing cars and engines and generally never look after myself and am yet to need more than a plaster for any injury. Take more than two aspirins and my nose bleeds for England and wins gold medals.
play with chain saws
I hope you play safely using two hands, thick gloves and not reaching overhead on a ladder. Do not ask me how I know this is so dangerous 
Thankfully I was not on thinners at the time of my chainsaw accident which required multiple stitches.
Jim
We have a Sthil long pole (12 foot) chain saw for over-head pruning so I never go up ladders with one. Truly I am more scared of them than sitting alongside my eldest in his stage rally car on a mission.
Remember my old headmaster back in the sixties using a chain saw above his head on step ladders. The machine must have malfunctioned which resulted in head decapitation. His wife found him later that day. Pretty dangerous machine the old chain saw and have never owned or used one.
Oh my goodness what an awful thig to happen!
OMG.
😮
Taking PIP AC treatments requires you to know when you're having AF episodes. So, there are some practical issues you may need to consider, if you haven't already. How certain are you that you don't have other episodes you're not aware of i.e. less symptomatic, asymptomatic or while sleeping? That's presumably why AC is normally prescribed as daily medication whether in AF or not.How do you know the "episode" you're experiencing is AF and warrants starting AC?The REACT-AF trial relies on AF being detected by a device (Apple Watch with modified algorithm for trial) rather than self detection.
The REACT-AF trial relies on AF being detected by a device (Apple Watch with modified algorithm for trial) rather than self detection.
That is correct. But per trial protocol, the Watch only has to be worn 14 hours a day. This means that they are actually allowing you to be in continuous afib for up to 11 hours before the need to take a thinner.
Now everyone is different -- therefore the device detection requirement - but personally, I am confident that I would know if I was in afib continuously for more than 11 hours simply by experience and confirmation by my Kardia or standard Apple Watch.
Jim
Wear Apple Watch minimum 14 hours per day and start AC if AF > 1 hour recorded. So if not wearing watch for maximum 10 hours and episode started 1 second after taking watch off and continued for at least an hour after putting back on then 11 hours is theoretical maximum but thats worst case scenario rather than the basis for starting AC. Participants have to start AC if AF episode duration detected > 1 hour.
Anyway, the question is really only one Joeyy06 can answer as it pertains to his ability to detect his AF events, including while sleeping.
The whole criteria for the REACT-AF was somewhat selective so the point about knowing structural state of heart, continuous 24 hour monitoring and co-morbidities is essential!
I agree it's always good to match yourself up with the inclusion/exclusion criteria of any study. However, if you take a close look, you will see that the inclusion criteria is fairly liberal including allowing CHADs s scores up to 4. And 24 Hour monitoring is not required just 14 hours.
Jim
Unlike some others, I'm not advising Joey one way or the other just putting out information pertinent to his question.
I have heard the lead researcher, Dr. Passman lecture and the real number is closer to 15 hours, but they wanted to err on the side of caution for the trial, therefore the one hour takes into consideration the watch may not have been on for the 10 hours preceeding and that you may not have been in Wi-Fi range 20% of the time. In other words, the absolute worst case scenario.
Jim
You're missing the point. I didn't say you were providing advice and it doesn't matter whether the threshold is 1 hour or 11 hours or 15 hours. To use PIP AC you first need to know you're in AF..... and it's just as important to know when you're not in AF (determines duration of episode). Hence my questions to Joeyy06:
- "How do you know the "episode" you're experiencing is AF and warrants starting AC?"
- "How certain are you that you don't have other episodes you're not aware of?"
You've written about how you know when you're in AF but you're not Joeyy06 and as we all repeatedly state, "we're all different". He is the one contemplating PIP AC and a prerequisite for doing so is for him to know if/when he should start taking PIP AC.
As for the time in AF before taking PIP AC, that would presumably be decided by Joeyy06's cardiologist - assuming his cardiologist supports him doing PIP AC.
BC: I didn't say you were providing advice and it doesn't matter whether the threshold is 1 hour or 11 hours or 15 hours.
I refer you to Joey's first post where he states... does anyone take the anti-coag on onset of an episode rather than all the time or is that ridiculous?
So yes, I'm relaying my own experience as well as clarifying trial criteria because I do see a big difference between 1 hour and 15 hours, because that addresses the important issue of missing short afib episodes while asleep.
Apologies if I confused you with someone else regarding the "giving advice" issue.
Jim
"I do see a big difference between 1 hour and 15 hours."
So do I but you are quoting me out of context without including the next sentence.
"To use PIP AC you first need to know you're in AF..... and it's just as important to know when you're not in AF (determines duration of episode)"
What I am saying is that duration is irrelevant if you're unable to consistently and confidently identify whenever you are in AF (and not in AF). You can't measure duration if you don't know whether you're having an episode or not and even if you do, confidently know (within reason) when it started and finished.
So that's what my questions to Joeyy06 were about.
"Taking PIP AC treatments requires you to know when you're having AF episodes. So, there are some practical issues you may need to consider, if you haven't already. How certain are you that you don't have other episodes you're not aware of i.e. less symptomatic, asymptomatic or while sleeping?"
"How do you know the "episode" you're experiencing is AF and warrants starting AC?"
And my question was to him as it's about HIS ability, not yours, not mine, HIS which I thought was quite clear when I stated:
"Anyway, the question is really only one Joeyy06 can answer as it pertains to his ability to detect his AF events, including while sleeping."
My initial reference to the REACT-AF trial was about that i.e. the trial is using a device to assist in the process of identifying when in AF.
BC: To use PIP AC you first need to know you're in AF..... and it's just as important to know when you're not in AF (determines duration of episode)"
I thought that was evident by both the trial protocol as well as my other statements. If not, I am stating it again.
And even though I can usually tell when I'm in afib, I always use the Watch and/or Kardia to confirm, which I have so stated in this thread.
So we will have to agree to agree ?
Jim
Joeyy06 is clearly not a participant in the trial. So, how confident is Joeyy06 that she can self-detect all of her AF episodes?
And before you repeat again that you can - just because you can doesn't mean she can.
She - neither of you can recognise a woman’s writing style 😂 (no comments about being sexist please!)
I haven't even noticed in the last 8 years since I have been on anticoagulants that it has taken that much longer for me to stop bleeding and I know quite a lot of people on anticoagulants and know of no one who has had any problems. I have not stopped gardening and getting cuts and grazes which cause no problem. Please discuss this with your GP and consultant.
Same here, I never think too much about being on an anticoagulant.
TracyAdminPartner
Welcome to the Forum, I am sure many of the members will offer advice based upon their own experiences with anticoagulants. They are a vital component in reducing the risks of an AF related stroke, if you have any questions, our Patient Services Team are able to help at the AF Association: heartrhythmalliance.org/afa...
You may also find the resource helpful in providing an overview: api.heartrhythmalliance.org...
Kind regards
TracyAdmin
booklet
Taking or not taking anticoagulants is about balancing benefits and risks - benefits are usually calculated by CHADSVASC scor or Qrisk algorithms whereas Bleed risk is calculated via HASBLED score and will indicate which risk is higher - clot or bleed.
I had a TIA after I discontinued anticoagulants following a, I thought, successful ablation and was under 65 so CHADSVASC score was 1 for being female so needless to say I am really happy to take for the rest of my life!
From a psychological viewpoint - our choices are decided by what we fear most - bleed or clot - not reason so you can read as much as you like it really comes down to what you personally fear more? And whether or not you have any intolerances to the medication which I don’t and fear surviving after severe stroke THE most so TIA was a red alert for me and added to my CHADSVASC score. I have had broken limbs, a few occasional deep cuts, surgery, dental procedures and falls when I have hit my head and never required any medical interventions to stop bleeds, they stopped on their own but just took a little longer.
It comes down to your decision but I would check that the advice given took into account your bleed risk?
View from here is that the WORST thing you can do is take them intermittently and there are several studies which indicate this. You may also be interested in a recent post I made a few days ago Entitled - Should I stop anticoagulation after ablation with extract from an article from BartsAF.com
Link to the thread I posted - you may find some of the content and replies informative
healthunlocked.com/afassoci...
Best wishes
"View from here is that the WORST thing you can do is take them intermittently and there are several studies which indicate this."
Can you say more about this CD? This is the first time I've heard this view - I'm interested to know more.
I will see if I can find the studies but I was reading up about this 10 years when that is exactly what I wanted to do - use a/c as a PIP and found studies through my EP that suggested research at that stage was statistical in that more patients than expected experienced a TIA or stroke after stopping anticoagulants than would be expected and compared to a group who had never started. I believe this was a statistical anyalysis rather than cause and effect study, which would never be ethically allowed anyway.
I think the recent statement from Nikhil Ahluwalia on BartsAF.com reflected the opinion of the EP who treated me which was there was not enough data to say with certainty that using anticoagulants as a PIP was to be recommended simply because there are stuck too many unknown, unknowns. My own experience of having a TIA shortly after ceasing anticoagulants may mean I hold bias view.
I would just repeat that US and UK advice take VERY different stances on this issue.
I don’t know if the AFA have put this question to their EP consultant expert panel and have given a view? Did I imagine seeing a video on using anticoagulants as a PIP on the UK site? Perhaps TracyAdmin might respond?
Interesting! That implies that it's the taking of anticoagulants, then stopping, increases the risk of an event rather than simply the lack of anticoag reverting the risk back to a 'non-anticoag' level of risk.
Exactly.
I have read many times, that you must continue their use, it is dangerous to stop and start - that's one of the reasons I favour Rivaroxaban as it is only once a day and it's so easy to take with your evening meal and makes it unlikely to forget !!!!!!!
Yes, I hear that, but what you're talking about is different to the point that CD was making (as I understood it). We do have a tendency in Western medicine, and maybe particularly in the UK, to decide on a particular policy then make it a 'monoculture' to the extent that there's little or no discussion of nuance or choice, and this is reinforced by overt fear mongering - however well intentioned and supported by statistic probabilities.
Personally I did try the 'one a day' anticoag but it upset my digestive system even more than the Apixaban.
My understanding is there was an old paper specific to the risks of starting and stopping Warafin, but does not apply to the newer NOAC's that most of us who are on thinners take and are being used exclusively in the REACT-AF study.
Jim
Yes, that makes more sense, otherwise the REACT-AF trial would be "buggered" before it got started.🤔 Thanks for that clarification.
And the Director of the REACT-AF trial is Dr Rod Passman, who is also a Professor of Electrophysiology, among many other titles.
Thanks for that clarification, Jim. I was wondering how that would work then in the study into PiP anticoags.
NOACs are problematic when stopping them. Your risk of clots is higher for some time after taking them. Higher than it was before.
I believe that's a misinterpretation of the package insert. Yes your risk can go up, but only to what it without the NOAC.
Jim
Sorry Jim, not talking about the insert. I found a study years ago about how the risk goes up when quitting NOACs. And not just to what it was before but higher. This has been known about Marcumar for a long time but with the NOACs they sort of swept it under the carpet. Would have disturbed the nice sales figures
The important expression is "rebound hypercoagulability". It is somewhat like betablockers. You take them to get the heart rate down. While taking them the receptors in your heart get multiplied. So when quitting them it needs time to build back those receptors. If you quit suddenly your heart rarte will be even worse than before starting BB. Logical.
journals.plos.org/plosone/a...
The title of the article you mention is "Risk of Thromboembolic Events in Patients with Non-Valvular Atrial Fibrillation After Dabigatran or Rivaroxaban Discontinuation – Data from the Ljubljana Registry", 2016.
Do you have knowledge of any other research that includes apixaban as one of the DOACs tested?
no, I don't.
First, thanks for the study link. Admittedly skeptical for several reasons including why several of my ep’s never had this concern and why the FDA approved REACT-AF if the data for "rebound hypercoagulability" was so compelling.
I in no way consider myself qualified to critique a trial, however with that said, there does seem to be a bit of a stretch from study results to conclusion.
First, unclear if the 866 patients were actually in afib at the time of discontinuation, or not. If they were, not relevant to a PIP AC strategy where you don’t stop thinners when in afib, but rather start them in afib.
But the big thing that struck me was how small the cohort who discontinued thinners was. Just 161 patients out of 866.
And then let’s look at why those 161 patients discontinued. 84 stopped because of planned invasive procedures. Is it possible that the incidence increased stroke was due to those procedures (or the underlying condition making those procedures necessary) and not due to the discontinuation of the thinners?
And then 10 stopped because of bleeding. Again, could there have been something in their underlying condition that caused the higher stroke risk versus simply stopping the thinners? It would be a lot more meaningful if we had more equally matched cohorts where one just continued and one intentionally stopped.
Anyway, an interesting and controversial topic, both here and elsewhere. For me, study doesn't change my mind and I’m going with the advice of my ep’s based on pre REACT-AF pilot studies showing the reasonableness of PIP anti coagulation in cohorts more closely matched to me and more recent studies suggesting shorter and less frequent afib events may not require 24/7 thinner protection. I will be following REACT-AF closely.
Jim
Yes, I also had the same doubts about the 84 and the 10 cohorts as to possible other causes of their negative outcomes.
But thanks to nettecologne for drawing attention to this research, especially in the light of the REACT-AF trial.
I had already decided to quit when I read this study. It just changed the way I did it, as I tapered then. Side-effects were just too bad for me, worst was a kidney bleed, very painful. Tapering has been done sometimes with Marcumar, that was why I searched the Internet for tapering NOACs. I found the explanation for the stroke rate logical, as they showed what changed with the NOAC. But I understand if for other people fear of a stroke is higher, especially if no side effects. For me it is caught between a rock and a hard place, especially as I am in permanent AF now. But then again, NOACs can cause TIA, so I just hope for the best.
Also with about 30% DOAC don't even work: pubmed.ncbi.nlm.nih.gov/315...
Another study, which was also never discussed: ahajournals.org/doi/10.1161...
I disliked the way, the NOACs were aggressively pushed upon patients during the first years. Most of the studies were financed by the companies making the same drugs. Also follow-up studies were very often signed by people sponsored by Bayer or Böhringer. Those studies are biased. If you get paid a lot by a certain company of course the danger of manipulating of data is great. And it is easy to manipulate data. You just drop patients with side effects out of the study for "reasons" for example. Older studies which showed the effectivity of Aspirin for stroke were just pushed into the background. And Warfarin was desperately tried to show as inferior, as you cannot earn much money with it. Those new drugs brought billions to Bayer, Böhringer etc. Lawsuits because of death or dangerous complications were swiftly and quietly settled, so as not to go into the press. Up to 2021 1,4 billion dollar were paid to patients. So no, I cannot prove anything. But there is a bad taste in my mouth when I think about NOACs.
Another one with better explanation of what happens when stopping NOACs and that it is indeed a rebound phenomenon: ncbi.nlm.nih.gov/pmc/articl...
"revious reports showed that abrupt discontinuation of anticoagulants could cause a rebound phenomenon involving a significant increase in procoagulant markers such as thrombin-antithrombin III complex, fibrinopeptide A and subsequently enhance thrombosis (4, 12, 13). In terms of NOAC withdrawal, some clinical trials, along with several anecdotal reports on patients with deep vein thrombosis or knee replacement surgery, suggested a potential prothrombotic rebound phenomenon after NOAC withdrawal. Most thromboembolic events occurred soon (median 1–2 weeks) following the cessation of dabigatran or rivaroxaban (2, 10, 11, 14, 15). In our study, the median interval between NOAC withdrawal and ischemic events was also 7 days, which may imply the occurrence of a rebound phenomenon associated with NOAC withdrawal."
Thanks for the study, you obviously have been putting in the work. But while it provides valuable insights into the potential risks of rebound hypercoaguaulability, a number of red flags highlight the need for caution in interpreting the results and all the more need for more trials with less limitations.
Again, only 16 patients in the NOAC withdrawal group. That group also had higher CHADS scores (mean 5) than the other groups. These high scores could suggest some had prior strokes. As a comparison, REACT-AF is only for CHADS 1-4 and plans to enroll over 5,000 patients and I believe a history of prior strokes will exclude you from the trial.
The study also does not thoroughly investigate all reasons for NOAC discontinuation, potentially overlooking important contextual factors that influence stroke risk.
Also by analyzing only patients who have already experienced a stroke, the study may overestimate the risk associated with NOAC withdrawal, as it does not account for those who discontinued NOACs without adverse events. The study is also made of up exclusively Korean patients which limits how much we can generalize the findings.
Jim
React AF ist funded by Apple + different pharmaceutic companies. I wonder how "neutral" can this be? But I think we come from different positions and will stay there amicably, ok?
React AF is funded by Apple + different pharmaceutic companies
Yes, Apple is supplying the watches, but this is an NIH (national institution of health) funded trial. No pharm dollars.
In fact, the pharmaceutical companies have nothing to gain here, because if the premise of PIP anticoagulation is proven viable, the sales of anticoagulants will go down, not up.
And yes, we will stay amicable and hopefully have been through this what I consider fruitful exchange. In fact, you and I have more in common thought-wise than most on this forum on the subject anticoagulation.
I think our only difference has been on this "rebound" phenomenal, which I appreciate you have brought to everyone's attention, I just don't think studies so far have supported the notion at least to convince me per previous comments, which doesn't necessarily make them invalid. Something definitely to keep following!
Jim
How soon after the ablation did you stop taking them? I will wear a monitor for 7 days after three months and if it is good then I shall stop my anti coagulants. Now I am anxious about stopping!!
My EP insisted on at least 12 months symptom free, regular ECG’s at different times of day(Kardia), BP monitoring and still was very reluctant because they felt it’s not just about the AF but what accompanied AF. For me it was ANS dysfunction, slow HR at night - then treated with CPAP and very low BP.
I tried taking them for almost a year. The last one of four landed me in hospital with a kidney bleed. Then I tapered and quit.
Gosh, thanks everyone for your very informative replies and links. This AF is a bit of a minefield isn’t it?! I’m sure my mind will settle as I come to terms with the diagnosis. I score 2 because I am female and have hypertension (although controlled on meds). Anyway thanks so much again everyone!
Hi Joey I am new to this as well its alot to take in and the support on this site has been great, I still have alot to learn
I’m 75 and have been on regular anticoagulants (ACs) for 15 years without any problems due to the ACs.
I don’t remember ever being worried about having a MAJOR BLEED.
The idea of having to depend on an Apple Watch or similar, when in the past I had paroxysmal atrial fibrillation (PAFib), to tell me if and when to take my apixaban would on the other hand have been a MAJOR WORRY!
Being on a daily AC for me is routine and reassuring.
Hi, I was on Edoxaban for a few years, initially prescribed on newly diagnosed PAF.
I had no particularly issues with it bar a few more small bruises from time to time. During this time I continued my normal activities which included running, cycling and rock climbing. On one occasion after some strenuous exercise, I did have a subconjunctival haemorrhage (red eye - broken blood vessel) - looked a mess but no harm done - it cleared up.
After a few Afib “free” years, the anticoagulant was withdrawn. It was initially prescribed as a precaution but as I was stable (medication) and below the threshold for anticoagulation anyway, it could be removed. So far, so good.
At the time, anticoagulation as a PiP was discussed but my cardiologist said there was no research to suggest this was effective, so it is not an option.
If at some point in the future, I need to start it again then I have no qualms about doing so.
All medications are a benefit versus risk equation. The risk of a bleed when on anti coagulation therapy differs for all of us. The risk of a stroke is also different for all of us. The benefit is the same though. Your decision should be made in consultation with your doctor.
From a personal perspective - I asked my cardiologist very recently about my need for anticoags. His advice was given my risk of a bleed is low and I have had no issues so far, versus my risk of a clot due to my AF (which I’ll add has only ever been infrequent and at low rate for very short periods of time) he preferred me to remain on the medication. I trust his advice but I queried him and said ‘but I haven’t caught AF on my Kardia or watch for over a year’. His response was that we didn’t know if it was happening when I wasn’t looking at my devices and that without a continous holter monitor, there was no way of knowing so given I’ve had no issues with the medication, it was best I stayed on it. He’s a clever man - his logic is spot on too.
All I can tell you is that, when first diagnosed, I didnt take anticoags and ended up having a stroke as a result of this condition, I had been taking 375mg soluble Aspirin a day, so, after 20 years of taking anticoags, I am pleased to say I have not had another stroke! With most of the new NOAC's there is an antidote for immediate use should you have a bleed and you should carry your card info that always accompanies a new pack, with you at all times. Would I take it as a pip, no, would I stop taking it after 20 years, no for as much as I don't like taking any drugs I would rather take than suffer a major stroke. As always in these cases, the choice is yours.
don’t be worried Joey, I do all sorts of stuff and have never had an issue with bleeding.👍
I empathise completely . I have had two episodes of AF two and a half years apart and seventeen months since the last one and here I am on Edoxaban everyday. Not at all sure my risk/benefit ratio is great . That said, so far I have absolutely no problems with it . My best friend who doesn’t have AF had a heart attack last week aged 69 so sometimes I feel it is not a bad thing as we age to have some form of anticoagulation in the mix . My friend is now on a cocktail of anti platelets/anti coagulation .
My conclusion is there is not a risk free perfect solution to this quandary and I would never be prescriptive about what another person should do . Given my circumstances I am attracted to MJames point of view of PIP as a possibility but not rocking the boat at the moment. I don’t take rate control drugs my HR is around 60 and my BP is low . The only drug I take is Edoxaban . When I have an episode of AF it’s highly symptomatic with a rate of 170+ so no chance of my missing it day or night .
I think if I was having five episodes a year I would take the Edoxaban . With a PIP you have to take them for a month so if your events are evenly spread you would be hardly off them anyway
I will have a chads score of 3 in Nov but I asked the doctor,why wait.so I am on Apixaban now. I would rather this than a stroke.
Just make sure if you bang your head badly you get it checked…I’ve cut myself..minor..and no extra bleeding noticed. Just tell your dentist etc and I carry a card in my purse to indicate I take it should I have an accident etc
Worrying won’t help…. Easier said than done I know… had about 20+ episodes over 18 months before I was diagnosed. . Currently my afib seems to have settled a bit so am happy.
Watch The York cardiologist on you tube…so reassuring and in easy to understand language. You will be fine.
You can’t cure it just manage it with meds and understand your triggers…altho I’ve now found all my triggers are not lol. Live your best life..life’s too bloody short.x
I went off 20mg rivaroxaban as i couldnt stand the nausea àny longer. Another doc insisted i take asprin. Now my doc says i should go back on rivaroxaban but 15mg instead of 20mg. Start the 20mg tomorrow. If i get nausea i will chuck them. I asked about Watchman or Atriclip but she doesnt like that idea.. its a minefield eh. All the best.
Been on it a few years now, I don't bleed any more than normal if I cut myself but I think it's probably important to get head injuries checked out just in case.
This is always a difficult one and we must bear in mind everyis different with regards to lifestyle co morbidities etc etc chads vasc is good but can only give a statistical risk. I am not saying any particular view on AC is correct and the majof the population with AF are probably better off taking AC . Now my situation, I cannot speak with authority although I feel I am reasonably informed working in a medical based profession. I went through a period 3 years ago of having PAF episodes which self limited I went onto AC then after not having any episodes for a year I came of (my decision) AC although I monitored via a watch and a Wellue wearable (during sleep also) monitor. AF had stayed away, 20 months ago I had an episode that lasted 5 weeks it was stopped using flecainide 100mg bd which I still take and no AF since, immediately that episode started I went t straight back on AC only to stop it about 9 months ago, I monitor very regularly I also have a kardia mobile now and keep a stock of apixiban, I am basically doing the pip regime and am hoping to go the same route with flecainide soon . I have spoken to various medics most see the sense in this but won't actively endorse this method , personally I have an Oneg blood group so transfusion could be difficult if I lost blood and I ride motorcycles and bikes so highish risks for accidents. This is my routine I don't say it is correct but I am so far comfortable with it but do not take stroke risk lightly. So no advice just my situation as I said we are all different. I am 69 male and uk based .
not silly and something I had considered especially post ablation when episodes are rare. However, there is insufficient evidence that a PIP approach is safe - also coming on and off anticoagulants has some risks according to some - your clotting factor radically changing over a short period. Also my EP says many worh AF have slight heart inefficiencies which may also worsen over time and episodes however infrequent.
I think there is a lot of interest in this issue and research ongoing but until there is more substantial knowledge I am staying on Apixaban for life despite rarely having an episode and a CHADs of 2. And an ok HASbled score. I really don’t want a stroke
Hi Joey, as you will have gathered from loads of helpful replies above, it is only a decision you can make, don't rely on others just do your due diligence and then take that decision.
I'll be brief as I can:
CHADS is not everything, convenient for medics and I believe on balance over cautious. Other European guidelines less cautious than UK. Consider all your current health and lifestyle trusting in your gut feel.
Edoxaban (I just started on it last month 70yo) has I understand no reversal agent and can exacerbate joint issues, my hips are stiffer; all pills can have side effects, the level dependant on the individual's resilience. The reason I started was a change to less psymtomatic AF episodes possibly Flutter.
I decided against ACs offered for 10 years as my AF episodes were very rare and I was pretty certain were not occurring in the night as I was highly psymtomatic.
Warfarin would be my preferred AC but as my anxiety level should be lower and my eating habits are very varied I decided on balance not to push for Warfarin, which I expect you would have to as the NHS is unlikely to have the people to administer it properly.
I think you will find the reversal agent used for edoxaban is the same as with apixaban as both drugs, and rivaroxaban, are selective direct factor Xa inhibitors.
My cardiologist told me none of the DOACS had a reversal agent but I understood at least Riveroxaban had one but I didn't say anything!
If you check any hospital protocol for major bleeds in anticoagulated patients, you will see what I wrote is true. Best to query all "opinions", even from "experts". It's your life!
You might be interested in Tapanac 's experience reported on the Forum just a few days ago ...
"I fell over and banged my head very badly on the paving. As there was so much blood from my face nose and legs and because I knew that hitting my head was not good knowing I was on anticoagulants my husband called the ambulance. I had no symptoms but i was given a CT scan which showed a subarachnoid bleed. I was stopped on the apixaban for 2-3 weeks given a reversal drug through cannula. As it was all so quickly diagnosed all was well but I would have symptoms if left."
So a good result for the "reversal agent" I mentioned.
OK ,its OK to be scared .Your stroke score is sufficient to need ACs. The bleeding risk is often over magnified because people ,including many Dr's and medics,call AC " blood thinners". The impression given that therefore any injury will result in unstoppable bleeding. Not correct it just means on AC we take longer to clot( stop bleeding) medics know how to deal with it in cases of severe injury.
There are reversal agents.
I have been on ACs ( apixaban) since 2017. I have had a broken shoulder injury,extensive dental work, a lacerated hand ,various other cuts etc with no particular effect.
I was extremely glad to get on AC,as my mum and nanna had AF strokes. I had been told that a score of 2 wasn't high. Then had a TIA ( mini stroke)
Please don't worry ,you are lucky to be one if the AF patients protected stroke risk, which none of us want.
To answer your query on AC as pill in pocket ,not recommended in the UK. AF can occur silently or during sleep.
Best wishes
Welcome Joeyy06. I will leave others to debate on the American experiments, except to say that taking an anticoagulant is nothing to worry about, better to be protected as well as you can against strokes all the time, than to play Russian roulette with your health.I've had AF on and off for nearly 30 years. Until you find the right medication plan it can be upsetting. For the last 7 or 8 years my AF has gone from having episodes which I can feel, to being one long episode for 7 to 8 years which I can't feel. I take warfarin and have my own testing meter, so can check my blood's coagubility whenever I want, which tends to be every six to eight weeks.
During the time I've had AF, I've had three unrelated colonoscopies, and my appendix out, and had a bleed which took three months to stop.
The bleed came from falling over at home. Somehow I cut my leg open without cutting or tearing my trousers. The cut was 6" long by 1.5", and initially bled profusely. It was near to my shin bone so was not stitched but closed with closure strips. I was in hospital for 3 days, while the majority of the bleeding stopped, my leg being dressed frequently and the blooded sheets changed.
I then went to my local medical centre to have my wound dressed, 3 times a week, until after 11 weeks there was no sign of blood on the dressings. After a couple more weeks a scab was visible over my wound. Throughout that time I continued to take anticoagulants.
Two of the colonoscopies were while I was still on anticoagulants.
For my appendix being removed, the hospital gave me intravenously vitamin k and antibiotics for 12 hours up to the operation. After it I was put back on Warfarin.
Hi Thomas
Always put Aloe Vera on any wound. It helps close it.
What an extremely difficult wound. When I had one on my leg before I was on anti-co.agulant the best dressing was 'silver' and you keep the dressing damp.
cheri JOY. 75. (NZ)
sorry you feel so scared! Try and speak to the prescriber of your medication to answer some of your questions.
My take is bleeding risk really low on Doac (edoxaban etc). And the risk of stroke is relatively high. I’m know which I’d rather not have!
Xx
you have to take anti-coags consistently for them to work. As to the chance of a major bleed, try not to worry, there are treatments should this happen but the chances are not as major as you think. They are just covering their liability.
Hi
Some research points to having an anti-co.agulant in the pocket. But its a risk as you don't know when it is going to happen.
For instance me, not on any meds, had a stroke and diagnosed with rapid and persistent AF.
4 days later a carotid arteries (clear) showed a shadow of my thyroid.
So the thyroid cancer caused the AF which caused my stroke.
It is up to you, the patient whether you take this added med to give you 'some' protection against a stroke.
I chose PRADAXA which I take twice a day. Older I take 110mg twice day so it comes in 2 doses 110mg and 150mg.
I figured that at 1/2 dose there is no time there is a double or full dose in your blood at a given time. Therefore there is the least chance of being in an accident and having a bad bleed.
I have taken them for almost 5 years.
I do not take Statins. I refused RAI Treatment after Thyroidectomy, TSH suppression. I do not have flu injections but I have had 6 COVID jabs. (I believe in herd innoculation for cOVID).
cheri JOY. 75. (NZ)
I am also new on same drug as yourself BUT I am in AF 18 hours a day now BUT my CHAD score remains 0. When they complete a CHAD score they look at age, sex, diabetes, high blood pressure & heart scan results and that’s what gives them the score so for you to score 2 you must have 2 of the above problems. I’ve had no problems taking this drug so far and never questioned it even though only 52 as I would hate to have a stroke and people in AF are the highest risk of a stroke if not anti-coagulated. Prevention is better than a cure. I am a cardiac nurse myself so I see complications of AF that can happen if ignored or not treated. Hope this helps. I understand your anxiety as I too was just as anxious and disappointed 1 month ago.
This is a personal decision, of course, but I'm surprised that a doctor prescribed you this medication at your age and with a CHADSVasc score of 0. The whole point of the CHADVasc score is to determine that the risks from the medication are higher than your risk of stroke. But of course, you must know that, being a cardiac nurse.
Hello, I am one of the unlucky ones, I have paroxysmal AF and was taking Warfarin. Unfortunately I had a brain bleed but thankfully I recovered with no after effects. Following the bleed I was told by the medics not to take anti coagulation again. So I suppose I try to not think about any consequences.
Suzanne
I'm sorry to hear that you had that happen. It must have been pretty scary! Glad that you came through it without lasting effects.
I too was worried when first prescribed an anticoagulant but now, I just get on with life and don't think about it, unless I'm having any invasive dental work.Any bumps tend to produce an impressive bruise but other than that, no real issues.
I would never consider taking one as a pill in pocket, regardless of trials, as I have no way of predicting when I'm going to have an AF attack but they are quite often during the night, so by the time I'd realised and taken a tablet, I could already have a clot formed and lurking to give me a stroke.
Also, if you require a cardioversion, they will not generally do it unless you have had constant anticoagulation for at least 3 weeks.
hi. I am in the US and was surprised that a world renowned EP said that if you’re in a fib for over five hours which a lot of research shows is the benchmark for making a clot, he does have some patients on a PIP of anticoagulation and he says you take it for a full week after you go back into normal rhythm. The reason I was shocked and wouldn’t do that is because of the black box warning which is totally misunderstood even by brilliant doctors. It’s so shocking. The reason it says not to go off is because going off can cause blood clots, stroke, heart attack and death. Doctors think it’s because when we go off and then have a fib episode, we have a stroke. But the medicine itself when you go off can cause these things. I called the company to get clarity. so I think it’s worse to go on and off than to either be on or off. It’s very difficult and your fears are very warranted. As we read from the person who wrote about a brain bleed, unfortunately something like that can can happen. I think some doctors prematurely put people on anticoagulation. How often someone has a fib is being considered more than it used to in regard to using just the chad vasc score. Some blessed people breeze through being on medications and some people don’t. I’m so sorry that we’re all faced with this. I wish everyone great health and peace with their decision.
I hope my experience will allay some of your fears about taking blood thinners.
I have been on Eliquis for PAF for over a year. Around 9 months ago whilst riding my push bike I was T boned by a 4 wheel drive at around 40 kph according to the witness. I sustained a very deep laceration on my arm that went around over half my arm and damaged my nerve. I scraped most of my skin of my right knee and broke my leg (small bone) and wrist. It took the ambulance over 20 minutes to get to me. I didn't have any excessive bleeding and all the time I was in emergency they didn't have to stem excessive bleeding.
It may have been different if I hit my head as its hard to stop the bleeding if it happens on the Brain. Do I still take Eliquis, yes because I still get Ectopic beats and I may get AF during my sleep or don't realise that I'm having an episode.
Some cannot tolerate the side effects of DOACs and are driven to consider closure of the LAA (left atrial appendage) with a Watchman or Atriclip device to help lower stroke risks.
As for me, I am 77, a CHA2DS2-VASc score of 2 (for age alone), and a HASBLED score also 2 due to previous spontaneous (ie. unexplained) acute bilateral subdural haematomas in late 2016 (before my pAF in late 2020).
My current decision is NOT to take the apixaban I was prescribed, as my previous bleed(s) (self-ceasing, & then 10 days of steroids) left me with the reasonable fear (based on experts and others) that if such a bleed was repeated (the scan image of the extent and depth of residual blood across both hemispheres of my brain was truly frightening), and living alone as I do, and I WAS anticoagulated, then such a bleed might well prove catastrophic before I could call for help. (As another Forum member said, such an anticoagulated bleed would bleed longer than otherwise, not cause it, but really is a concern to me)
So I consider my decision rational, not the Russian Roulette mentioned by another Forum member. I consider it more a case of "being caught between a rock and a hard place". No winners here.
But I am interested in the outcome of the PIP anticoagulation trial, REACT-AF, as my pAF is still infrequent enough to hope that if effective, a PIP use of anticoagulants might offer an extra option in my ongoing decision making re anticoagulation. (given that the Watchman is NOT on MY list of options by choice, and an Atriclip would only happen if I underwent a Wolf type minimaze procedure)
I hope some part of my reply is helpful.
bob
There is a danger of Intracerebral hematoma (brain bleed) with anti coagulants. Here in the U.S. there are reversal agents available, for I believe most anti coagulants. But I do know that there is one brand or more that do not have reversal agents available. And even so, it seems that reversal agents can have their own problems. It is something that you will want to discuss in depth with your doctor. Hopefully you have a doctor who cares and will listen.
I am so sorry you are going through this. It can be quite upsetting to have to come to a decision for what is right for you. I know I have been there myself. Blessings...
Joey can’t see from your profile any info re age or activities or sports you may engage in? So if on anticoagulant then contact sports are a high risk activity.
The DOAC anticoagulant has a relatively short half life in that it is only in your system a few hours, thus the requirement to take it twice daily. While I am not a physician, I do clearly understand the "risk vs reward" aspect. My personal EP does not advise and recommends to never use the anticoagulant as PIP.
These studies are being done, not just for sound medical information, but because many cannot afford the cost of daily anticoagulation and then choose to go without so they can eat or have heat in their house. In the US, the system is broken and pharmaceutical companies take advantage of this. We can't afford $450 USD a month for Eliquis. No chance of a generic until November of 2026 here in the US. This is about saving lives.
On another note, I have asked both my cardiologist and EP and they seem to not know this may be an option. Truth or on the side of the drug companies.
One of the studies I read was "pill-in-pocket" anticoagulation for stroke prevention by Peigh-Journal of Cardiovascular Electrophysiology-Wiley Online Library.
It requires the use of a fitness watch or cardia report to the doctor that you are in AF and then you take the anticoagulant for several week afterward. It will not work for everyone, but for proper treatment is better than no treatment.
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