Hey fellow AFibbers.
I keep hearing various stories of anticoagulants as a PIP. Does anyone in UK have this regime? I have a PIP flec but daily anticoagulant & betablockers. I’m PAF & AFIb free 1 year. Thank you 🙏 Rachel
Anticoagulants as a PIP - UK? - Atrial Fibrillati...
Anticoagulants as a PIP - UK?
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Pigleywigley
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I don’t know of anyone using anticoagulants as a PIP - wouldn’t do for me.
That sounds a bit risky to me and having seen the devastating results of a stroke, I would never consider anticoagulants as a PIP (Pill in the Pocket). Where have you heard of talk of that, not on here surely? An AF attack could start when asleep and I wonder how long it takes for an anticoagulant to take effect.Jean
Guilty here Jean 
See my post down thread. I have mentioned it before. A compelling concept for a select group of afib patients.
Jim
My dad got up in the night to go to the toilet, had a stroke, lay on the floor in his house for 3 days until my brother managed to break in. He died in hospital a few weeks later.
He kept saying that he wanted the beautiful blue Danube, we were confused until we realised it was a CD of classical music that he had. We took it to him and then later played it at his funeral.
A friend with AF and in her early 60's, knocked a cup of tea off her bedside table, leant over to mop it up and had a stroke (now in a wheelchair).
A serious stroke is a living death as I witnessed at the nursing home I helped run. Many patients couldn't move, eat or speak and were fed by a tube in their stomach. They wore large nappy (diaper) type incontinence pads which were changed by young carers. On top of that they looked out on the world with bewildered eyes. It's heartbreaking I can tell you. No way do I ever want to be like that. As much as I hate taking any pills, they are ones that I will never stop.
Jean
completely back everything you have so poignantly written here jeanjeannie!!!
Amazed at the idea of taking an anti coagulant as a pip!!!
I wholeheartedly agree with you Jean!
What you described 😥, absolutely as it is, every word. I know.
Jean, I don't often bring this up often because I don't want to scare people -- and I'm not saying that is your intent -- but I know of two people within the last year that fell and hit their heads while on AC's. One died. The other almost died and is still trying to regain his speech. And neither was involved in a high-risk activity. One was playing tennis and got hit in the head by a racquet. The other just stumbled and fell on the sidewalk. There is stroke risk. But there is also bleed risk which sometimes gets left out of these discussions. The best we can do is balance those risks and based on our risk scores, individual history and doctor's advice, come to the decision that is best for us as individuals.
Jim
Great response, Jim. Bleed risk is almost always left out of the discussions on here, and I assume it's because those who fiercely defend daily anti-coags aren't aware of the millions worldwide with bleed risks, or other serious contra-indications due to their particular medical issues or other drugs they're on. Many people also have bad reactions to taking anti-coags, so QOL can be miserable for them. PIP anti-coags are a blessing to people whose bodies can only handle them in that format.
I've got HHT , a bleeding disorder, anticoagulant making life a mystery. 20 heave nosebleeds in last two weeks which leads to anaemia which can lead to afib!!!
Jajarunner, I am so sorry you are suffering so much with these issues--20 nosebleeds!! (I suspect "mystery" auto-corrected from "misery", yes?) Some do 1/2 dose, if not PIP...? You are certainly one of those millions I mentioned, like myself. My heart goes out to you. We just keep trying options... to get better QOL. Peace, Diane S.
Oops, yes misery. Darn spell check!! I was on half dose for ages but then one of the cardiologist said the risk of stroke wasn't mitigated enough and the bleeds would be just as bad. Since I always know when I'm in afib and always end up in a&e for urgent cardioversion, I would like to come off of them.... But then you read the horror stories on here re strokes. I thought I read somewhere that anticoagulants only reduced the risk by a third anyway?!?! Plus I'm a Chad score 1 so low risk....?
Have you read this article by Dr. John Mandrola? It might help... drjohnm.org/2017/04/should-...
That's sweet of you to share. I'll read it right now, thank you.
I really feel for you, nosebleeds are worrying.
I've had nosebleeds all my life, but a couple of years ago had a serious one that wouldn't stop. Oddly it was not from the nostril that had bled in the past. Paramedics arrived, they couldn't stop it, took me to hospital where a consultant asked how long my nose had been bleeding that fast and told me I'd probably lost half a litre of blood in that time. They tried to cauterise it, didn't work. I started feeling very odd and was put on a drip. Ended up having a bung put up my nose and it being pumped up, was admitted to a ward and the next day that side of my face was swollen and I looked like Quasimodo. Was sent to another ward where I sat and wept all morning. I apologised to the nurse and she said she'd seen grown men cry in my situation. When you have a serious nose bleed you are trapped at the mercy of the hospital, can' t flounce off home. I'd never felt so trapped by a situation, it's difficult to explain, but you may understand.
If I ever have another bad bleed I'll immediately take a beta blocker to calm my blood pressure, that going up by my feeling stressed certainly didn't help. Nurse in hospital wouldn't let me take it as consultant needed to be asked.
I've since learned never to blow my nose and have not had a nosebleed since that episode.
Jean
Having been on rivaroxaban for years with no issues but changed to edoxaban in February and I have now had three major nosebleeds in six weeks. 2 pints of blood lost each time and ended in nose packing and hospital admission. Very painful and scary especially at the moment when you cant get an ambulance! As I hadn't had an Afib for over a year I was all set to suspend the anticoags for a while until everything healed - although we still don't know if they have been able to cauterise the right area - but now the Afib has caught up with me and I am going into afib every time I eat something - yes honestly even a slimfast shake will set it off! settles down again after a while but I am in a turmoil as to what to do. It is leaving me exhausted and scared and trying to contact my cardiologist
It's the most dreadful experience isn't it! I tell everyone I'd rather shoot myself than go through the trauma of the nosebleed from hell that I had.
I'm lucky that my HHT is only medium, some poor people go through every day and have to have transfusions. Can you imagine. And HHT makes you prone to afib as an added bonus!!
I posted about three months ago about hitting my head so hard it would've knocked most people out. But to be safe I immediately went to the ER where they did ct scan of my head and numerous blood tests and other tests and all came back negative and was sent home. I'm on 5g apixaban morning and evening and am 77 years old and like jean I will never stop taking an anticoagulant as I'm too chicken to play russian roulette with my life.
5 mg of Apixaban , you mean?
Sorry, YES mg.
A high-profile regular contributor on this forum stated, only last week, that ACs carry no bleed risk. What's the truth?
I'm open minded to most things Jim, even with what you are saying and I've read every reply to this post with genuine interest. I hate taking any medication and if any proof is ever gained that we are better off without anticoagulants. I will be off them like a shot, but until we get that proof I'm too scared (of a stroke) not to take mine.
Interesting post Pigleywigley .
Jean
yes Jean I didn’t realise just quite how interesting it would get!! Boy 😂 (no laughing matter of course!) but I am young and if my PAF is years apart I want to ride my bike, climb mountains and horseback ride without the risk (or more worry!) of falling. I will be keeping an eye out on the research & discussing with my cardiologist.
They're all the things I used to like doing too. I still used to go out on my bike until I went into permanent AF a few years ago. Thinking now that I'd like an electric assisted bike. I love mountains, though I must say that walking in the Peak District along the rivers is wonderful too and a place I'd like to go back to, more than go anywhere abroad. York is calling me too, I love the history of that place.
I think each cardiologist/EP will have a different idea about anticoagulation.
Couldn’t agree more heartily (sorry) with Jean - my dad suffered many strokes - I don’t like the fact I have to take tablets but I am very happy I take Apixaban - it’s the one tablet I could kiss when taking it as I know the devastation it can help to prevent - taking as a PIP just doesn’t sound right at all in my head
These are sad stories. But, yes, PIP anti-coags are being taken by some people, and the reason some people want them is because millions of us worldwide have conditions with bleeding risk, which can result in hemorrhagic strokes or bleeding out if you take A/C's daily. For people, such as myself, with bowel or other bleeding diseases, daily anti-coagulants are NOT always safe for us. PIP might be a reasonable strategy in that case. My cardiologists & my GP agree. As is often said on this site--remember, each one of us has a unique medical history. Some of us have very low stroke risk, low CHADS2VASC2, or complications no one knows about. We don't know anyone's complete history, so it is not correct or helpful to say "if you have AF, you MUST take A/C's daily". I know every one of us is kindly well-meaning in our comments. But all of us with AF are forced to take certain degrees of risk when we choose medications or treatments. It's hellish enough to be faced with those choices! We have to trust that people are working with their doctors, who have their whole history in front of them, and choosing options that are best FOR THEIR unique situation. The blessing of this group is that we who are suffering with AF do not have to feel alone in this hard journey. Grateful for you all, Diane S.
This is so refreshing to read. I have not even been diagnosed with AF, yet my GP and an 'evangelical' AC nurse are trying to force me onto daily AC meds. They will not consider my inflamatory bowel condition and the risk of bleeding at all; they seem to believe that I have merely an upset tummy. They have not even referred me to a consultant cardiologist, but have come up with a 'risk score' based on an algorithm. They've included conditions I've never even had, but are saying that this is a necessary precaution to prevent a stroke!
I certainly understand, and have lived through that scenario! as I suspect many of us with possible bleeding risk have. It is NOT playing "Russian roulette", as people keep repeating, to inform yourself on the actual risk rates and combine that with your knowledge of your own bleed factors. Here is a respected EP/cardiologist's take on when to take an anticoagulant w/ AF that you may find helpful: drjohnm.org/2017/04/should-... All good wishes!
VERY well said, Jean.
Agree 100% I’m NEVER going to stop taking my anti- coagulant . I’m lucky , I’m on Rivaroxyban & I do well on it . I wouldn’t wish a stroke on anyone . We’re SO lucky 🍀 that we have that protection available to us these days !
completely agree with everything you have said. I too have seen the devastating long term effects a stroke can bring.
I've seen threads on here before discussing it. Not a risk I'd want to take as by the time you get a tablet down your neck and by the time it kicks in, the clot may already be on its merry way.A pip for this kind of medication seems pointless. IMHO, I'd say either take it or don't but I'm in the take it camp.
~Hey well done Pigleywigley being 1 year free of a/fib + paf
Never heard of an anticoag. being PIP - would have thought it maybe bit too late to take if clot already on its way which you would not know unless it's a biggish one to cause a stroke 
Continue to take good care & abundant blessings to you ~
Yes, I'm considering PIP anticoagulatin if my ablation is successful and/or I only have several afib episodes a year.
Most ep's use the updated CHADS score as the basis for stroke risk/taking thinners, once you've been diagnosed with afib, regardless if you're in it or not. Others, like Dr. Rod Passman at Northwestern, argue that the primary risk is only around the time of an episode and therefore taking thinners 24/7 with CHADS 1-4, can put patients at an unnecessary bleed risk if their episodes are infrequent and well defined.
He has done a promising pilot study which is mentioned favorably by Dr. John Day in his book "Afib Cure" and subsequent blogs. He is now doing a very large, multi-center trial in conjunction Johns Hopkins and Apple Watch, to test this thesis further.
In the trial, one cohort will take daily thinners and the other cohort will only take thinners if an afib episode lasts over an hour and then only continue thinners for only 30 days. They are using the Apple Watch, with special programming, to alert patients when they are in afib. They were scheduled to be enrolling about now.
Google "Dr. Rod Passman Apple Watch" and/or "Dr. Rod Passman pip anticoagulation" for more information.
Jim
I know a lot of people on here say if you have AF you have to be on ACs no matter what. I’m a CHADSVACS score of 1 because of borderline BP and on the lowest dose of lisinopril. My BP has dropped 10 since my ablation to 114/75 and my EP said we might try going off lisinopril. Since I’m an active gravel cyclist, they said my bleeding risk on Eliquis is higher than my stroke risk and suggested low-dose aspirin which I’m on. Dr. Day’s book also talks about the bleeding risk for active people on ACs.
Sensible decision-making there, IMO.
I always read posts and threads on this subject with interest, as I am an active cyclist (mainly on road and easy trails these days) on daily Apixaban and don’t want to give up what I love doing! My CHADSVASC score is 2, but even then the risk/benefits balance isn’t a done deal (for taking ACs) and I would love to have the confidence to try a PIP approach if that was sanctioned by improving monitoring (I should add I am in NSR after an ablation last year). The closest I got was when discussing with an EP if I should go skiing and he suggested I might consider tweaking when I took my Apixaban to reduce the bleeding risk from a bang to the head… we didn’t go into detail though at that point but it’s something I might ask about again!
I’m with you. As you can see many are not and that is ok as is many of the circumstances and AF burden different too. I’m going to discuss too. I’m off horse ranching in the middle of a National park in Texas and want to understand the options before I go!
..... and what if you are asymptomatic ..... in and out of AF and have no symptoms, that is you just don't know. A fools errand !
...and you really believe an ablation is the end all, cure all and we all live happily ever after. Some do, some don't.
as I age my chads will increase I’m sure. I’m zero at moment 55 years of age but if cardiologist tells me it’s time for anticoagulants then I shall take them without hesitation.
I was 65 when diagnosed with paroxysmal AF ( in Jan 2010). It was also written into my report that I could be at times asymptomatic. I was put on Warfarin immediately ... (and for life) the consequences of NOT taking it were explained, as was the need for INR testing et al. Back in those days all these NOAC's were still in the developmental/ testing stage by Big Pharma.
I'm now 78, I self test with my own device, I also work, driving a bus part time and don't even consider my potential risks - if I did I'd probably never even sit in my courtyard garden with an ice cold beer or several 😂😂
I have to chuckle at all these naysayers ......... I ask or rather put a question out there ...... would a type 2 diabetic NOT ever test their blood sugar. NOT ever take their medication (whatever it is) . Same argument for Warfarin or all this new stuff that's in the marketplace (NOAC's).
I must agree Ben, I do find it strange that some people seem totally against anticoagulants. I can understand if it’s because of a medical condition etc. I was diagnosed at 45 years of age and although I had a zero chads at the time I was still placed on them ASAP because I was getting lots of AFIB episodes, lengthy in hours. The EP and cardiologist made me aware of the damage a stroke can cause and i jumped at the chance of reducing the risk. But After undergoing three ablations and my afib burden dramatically reducing my EP took me off them. It’s very rare I get an episode now and if I do it’s all over in 2 hours max. and my chads are still zero. But I wouldn’t hesitate in going back on them.
Trial is using a specially programmed Apple Watch which will alert in real time to any afib episode, asymptomatic or not.
I’d like to know about the program on the Apple Watch that alerts you to AFib
And would aspirin do the same effect as Eliquis as a blood thinner?
Apple Watch current does not have a real time afib alert function, however does have an "afib history" function that can tell you if you've had afib during previous time periods. It does not check all the time, so not 100% accurate. The Apple Watch being used in the PIP anticoagulation trial is a special watch which will give you real time alerts, but as of now only available if you participate in the trial. Aspirin and Eliquis are two different classes of drugs. In the vast majority of cases, an anticoagulant like Eliquis is prescribed if you have afib and deemed a stroke risk by various criteria, the current CHADS scrore the most popular. Aspirin is still prescribed to some instead, under certain circumstances, at least in the US.
Jim
thank you so much for your reply
I do have an Apple Watch and a Kardia
I don’t know how to figure our the results of an EKG. As long as the marks are regular and the watch says no AFib. I guess I’m OK
Both Apple Watch and Kardia are very accurate in automatically analyzing afib, but not 100%. In the beginning, if unsure, or if you're going to base a treatment decision on either device -- always a good idea to run the ekg by an electrophysiologist or well versed cardiologist. At least in the US, that service is offered by Kardia for a fee, with two free consultations per year.
Jim
thank you
With the watch you do have the ability to check for AFIB at any time. Also, if your heart rate is over 100 consistently for ten minutes and you have been inactive, you get a high heartbeat alarm. I use my watch regularly to stay aware, although I am always symptomatic so I know when I am in AFIB. I take 1/2 dose of Eliquis daily to compromise with my Dr, and move to full dose if I go into an episode. I really believe PIP is right for some people.
I am going to explore this option.
Yes, between some of the functions of the Watch and if your episodes are mostly syptomatic, you have a lot of the bases covered. It would be nice, however, for a real time afib alarm on these devices, however pretty sure it's a regulatory thing. The Apple Watch used in Passman's trial is specially rigged to do real time alarms.
Jim
Much as I love my Apple Watch , I wouldn’t dream of taking that risk . Mine was a Godsend during Lockdown 2020. Had numerous AF events , took successful EVG reading , sent them to my Cardiologist & eventual diagnosis led to a successful Maze Ablation. Technology can fail sometimes .During a recent A-fib attack, that lasted 9 hours & came out of the blue , 2 yrs 7 months after a successful ablation , my current Apple watch malfunctioned & I couldn’t get an ECG - luckily I had a spare available to get a reading to send to my Cardiologist . Modern NOACs are a blessing as far as I’m concerned.
the good news is (or not!) is that I am no asymptomatic - I am v symptomatic when I do have one.
in reply to mjames1
In this forum, long time ago, I have talked about very probable mechanism of getting a stroke and have raised the question about why would all AFibers take anticoagulants. My idea was that only people in permanent AF and loosing a lot of water (peeing a lot, what some people do when in AF, and some don't) should take anticoagulants. Described situation leads to the increase of platelet concentration and to clotting. The reaction was very sharp - Jesus, what am I talking about!!?!
Interesting will look at that report I've had no episode for years am female and considered for some time I don't need anticoagulation wounds and scratches take weeks to heal usually come off blood thinners to enable a wound to heal
I would not consider stopping my Apixaban completely but I do tinker with the dose. The full dose gives me horrible lower backache or rather makes my permanent backache a lot worse. It also makes other joints ache more and gives me reflux and bloating. The half dose is tolerable. The clinical trials for the DOACs that had lower doses available showed that they were effective at preventing ischaemic stroke but not quite as well as the full dose. I can't remember the exact figures but the difference was not very much. The lower doses also had less bleed risk. I take several supplements that have a "thinner" effect including a small dose of nattokinase. When afib strikes I go back up to the full dose and stop the NK till the backache gets intolerable. Some people would say I should take the full dose and take pain killers every day for the backache but I get lots of side effects from those too! Bottom line I do not tolerate meds well at all and have to balance my daily QOL against the risk of a stroke that might not happen. Most of the people here who finger wag about taking ACs are the lucky ones who can take them without getting any side effects.
I’m with you Jim & will await the findings next year. Hoping I may be a candidate with chads at 1!
Clearly slightly more enlightened on the other side of the Atlantic. Doctors that listen to patients and treat them holistically - that will never happen in the UK where boxes must be ticked!
Do you have a link for the updated Chad's score please?
Never say never but not in my lifetime and I’m only 21 😂
mjames1 in reply to
If you live to 26, you just may see it. That is when Dr. Passman's PIP AC trial will be finished. If results show PIP AC's not inferior to daily AC's in stroke prevention, but with less bleed risk, even you might switch to it? No, probably not you
Jim
in reply to mjames1
I’m well are of Dr Passman’s trial which will only apply to a very small proportion of AF patients and of course, I wish it well.
I’m not sure if any manufacturer of sophisticated AF monitoring devices would dare to sign up to such a high risk strategy, as PiggleyWiggley might say, pigs might fly. However, this shouldn’t detract from optimism for the future as long as AF patients currently, are not influenced into thinking that this might be worth trying now because the consequences do not bear thinking about.
However, you are absolutely right about one thing, when I’m 26 and still enjoying NSR, I’ll be sticking my current medication.
mjames1 in reply to
Apple "dared" to sign up for the trial. They arguably have the best reputation of any high tech company in the world. All participants will use Apple Watches for my monitoring of asymptomaric episodes.
You are correct, PIP AC's only apply to a selected population but it's hardly "a very small proportion". Basically anyone CHADS 1-4 with say less than 4-6 episodes a year would qualify.
That would include very many of us, esp those with successful ablations.
And I'm certainly not suggesting anyone to do this. prior to the trial being completed. This a shared decision between patient and doctor using best current evidence of risk vs reward.
But hats off to you for wishing the trial well, as I think you understand what is at stake . I just don't understand why so many others have written the trial off before it begins! All of us only take AC's because we believe the rewards outweigh the risks. If that paradigm changes, why would anyone not be happy and take heed?
Jim
in reply to mjames1
please don’t prejudge outcomes and inadvertently cause less well informed members to take chances they might regret…….
mjames1 in reply to
Please read again second to last paragraphs of my post. This is a doctor patient decision to be made only on best CURRENT evidence.
Jim
in reply to mjames1
I’m sure that you are already aware that there is concern in the States that some AF patients are already pursuing this approach without the knowledge or approval of their medics. This maybe due to the high cost of drugs or for other reasons. In the past, when this has been discussed on the forum, some members who have expressed an interest, have been encouraged by other members to engage in using the message facility as this will allow ongoing conversations, using their terms, “under the radar”.
The sense of concern expressed by mainly the UK contingent is obvious. Everybody is aware of the trial, so why not leave it there until the trial runs its course, declares its findings and the medical fraternity around the world acts accordingly. This will prevent running the risk of someone feeling encouraged to do something which could change their lives for ever….or worse.
Purely a personal view of course.
mjames1 in reply to
You are also probably aware, that some with very low stroke risk, are taking anti-coagulants against the advice of their doctor, putting themselves at unnecessary bleed risk. Am I accusing you and others of promoting a thinner at all cost attitude that puts these people at risk?
I don't know where you get the idea that people aren't following the advice of their doctors. If you read all the posts, those that are off AC's or on PIP anticoagulation are so because their doctors suggested it, weighing risks/rewards and best current evidence. So it's not just Dr. Passman.
I believe in the old wisdom that information is power. We are all adults here looking for information our doctor may not give us. Those that do not believe this, probably don't visit patient-to patient forums and stick only to information from their doctor.
Jim
in reply to mjames1
Pleased to hear that you are prepared to take on board the very real concerns that AF patients have on this subject and for reminding me that Apple have a good reputation. Of course, it’s one thing agreeing to support a trial where participants have been carefully selected and will be constantly monitored and asked to follow very strict guidelines. Probably it’s an excellent marketing opportunity for them at the moment, but I expect their legal teams may have a different view if it was suggested that the plan went public. Although not essential medical, I expect all this will be taken into serious account as part of the trial. I’m not going to argue the toss with you, I, like others have expressed my concerns even though I am equally very aware of the potential benefits.
Just as an aside, I wonder how many forum members you have met face to face. Since 2014, I have met hundreds and they are (nearly😉) all a wonderful bunch of folk. Although they all have one common interest, they are all highly individual and it would be a big mistake for anyone to assume they have an understanding of what they need or don’t need from this forum As I said, why not wait until we hear the outcome of the trial, then we will have something specific to discuss rather than conjecture.
I’ll willingly let you have the last word……
mjames1 in reply to
You said" ... it would be a big mistake for anyone to assume (forum members) have an understanding of what they need or don’t need from this forum ..."
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Not sure if I understand what you mean here? If you mean that forum members don't take forum advice at face value, I agree they shouldn't. I don't even take what my ep says at face value. I always check, double check, research. But even more important with a lay forum like this. That said, the Forum is great for so many reasons, don't have to tell you that. And a great starting point for new ideas, certainly not an end point.
You also said: "...why not wait until we hear the outcome of the trial, then we will have something specific to discuss rather than conjecture.."
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Because PIP AC's is not new and has been implemented by some ep's already based on Pilot studies and review of evidence. Understand that -- at least in the US -- many patients simply refuse to take AC's when they need them, and one of the reasons for this trial is to give those patients an alternative. And if you read some of the posts here, it's not just in the US. I'm not sure why this always has to be such a contentious topic, not saying that our conversation hasn't been civil. Those, who along with their doctors who think that daily AC's are best for them, should stay on them. No one is trying to persuade them otherwise. Personally, I haven't even made a final decision on that even if my ablation is a success. I am concerned about stroke risk, but I am also concerned about bleed risk, with my lifestyle. I hardly ever bring this up because I don't like to scare people, but since others in this thread keep bringing up anecdotals, I know of two people this past year who had head trauma while on AC's. One got hit in the head with a raquet and died. The other, just stumbled when walking and hit their head on the sidewalk. Almost died and is now trying to re-learn how to talk. What often gets forgotten in these discussions is that AC's cut both ways and they do have risks. If they didn't, why would they even do this trial? Feel free for any last words and I may edit out my two anecdotals after you read this, because again I don't think people should be scared one way or another based on anecdotals. Decision should be based on best medical evidence on hand now as seen by you and your doctor.
Jim
I find your posts very informative and always well thought out, Jim, as a person with issues taking 'blood thinners'.
I get the impression that some members of the AC industry would put the meds in the water supply if they could! It's big business and easy to scare people into go along with it. Same goes for antidepressants; pills are cheaper than therapy, health education, lifting people out of poverty. Far too much at stake in taxing junk food retailers and creating a system of preventitive medicine. Pharmacutical lobbyists accessing government departments are doing a good job for their shareholders - anticoagulation profits are booming.
Alessa69 in reply to
Very well said ! 100% Agree
Afib free one year that’s just great! Is that without having an ablation? Any special regimes you have, that you think most definatley works?
no ablation. I have changed some things and reintroduced others. I believe low stress, low sugar & minimal alcohol including exercise, meditation and therapy have all helped. Best of luck.
Stress is the one the gets me every time but I have no idea how to stop it, if I lose the remote control I feel it build up inside me and start to palpatate, I drive for work purposes and how do you not stress in this day and age on the roads? I admire your resilience. 😁
I can't fathom out why anyone would consider anticoagulation as a PIP. Far too risky. You can't undo the effects of a devastating stroke.
Nor the effects of a brain bleed or other bleed from fall or accident. The trial will provide data for making a better decision.
I agree James it's not black and white but shades of gray...... Medicine has been very keen on blanket treatment for all at the same dose for many conditions. But the reality is often very different. Anti coag is a clumsy way of reducing a stroke risk. But if bleeding is high then there's also a compatible risk of a bleed on the brain through falling or va gong ones head.... a bleed on the brain cause simular permenant symptoms to a stroke. What's really needed is a treatment that is adjustable to meet individual needs.
Agree
A haemorrhagic stroke is less easy to treat than an ischaemic one and you are more likely to die.
Indeed.... And also internal bleeds elsewhere in the body may not be I identified or treated fast enough.. So I think the risk to bleed is often played down too much. My risk certainly was not considered despite being fast tracked twice. It took a wise experienced older GP (, remember those) to spot this & suggest a half dose instead.......
I only take a half dose most of the time. The clinical trial results for Apixaban half dose showed only a little less effective for prevention of ischaemic stroke and I am prepared to take the risk to avoid the side effects the full dose gives me. I take various supplements that have thinning properties which I consider important for my overall health and which might lead to a much higher bleed risk if I took them alongside the full dose. As soon as afib strikes I take the full dose and drop the nattokinase for a few days.
Ah yes was reading about the natto the other day. The full dose anticoag is too strong for me & cause me bleeding so daren't get into nattokinase! 😊
You didn't mention the risk of unexplained brain bleeds ie. without an obvious accident or blow to the head. I suffered unexplained chronic bilateral subdural haematomas in late 2016. And a recurrence of such when living alone and anticoagulated could mean a disastrous outcome before I am able to call for help, as medics suggest. And the message I get from the Forum is that I am "stupid" for not being anticoagulated. I need to keep reviewing my decision, and current information about alternatives are welcome to me, be it PIP anticoagulation, or half-dose anticoagulation.
Just adding to your Reply, agreeing that an individual approach is needed.
You are quite right Ozziebob. So sorry it happened to you. I hope you are OK? I wasn't made aware at all of this risk when prescribed them... & only recently read about it. It's just not as straightforward as people would believe.
There is research just been started looking at this but it will take years before they know any more.
My holter monitor said I was having frequent episodes I was not aware of. I can see the attraction for someone who has genuinely infrequent episodes - say one or two a year but I wouldn’t risk it. I thought the Apple Watch only reported arrhythmia if you noticed it yourself and pressed it to record?
They will be using a special watch program for the trial that will alert. Trial is only for those with infrequent episodes.
when will the results of the trial be available?
Hiya Pigleywigley,
No way would I get conned into that .... unless you got a death wish ...... and some peeps do die from a stroke with its origin in AF, as do these super fit athletic heros of the sporting world - runners (marathon and non marathon and cyclists).
Are you asymptomatic ? What I am alluding to is ..... I reckon now I'm AF free for definately 12 months but more like 18, just can't remember my last hit of AF ......... but I am/ can be asymptomatic .... that is have an AF hit without any symptoms, so in all that time I might have had an AF hit and not know it.
That said, I take my daily Warfarin and Bisoprolol and other stuff too for high BP and thus far I'm alive and well and grumpy 😂😂😂
Stay safe, stay well.
John
I declined the offer of ACs on CHADS1 as have been virtually AF free for many years. My cardio has given me a scrip for ACs should I wish to start them for any future lasting episode; he was not specific on episode time and clot risk but I would start considering starting them after 2 hours. I would also consider stopping again after 2 weeks (or more,relative to the duration of the episode), although remain a bit concerned about the possible additional risk of stop starting.
I don't think PIP is suitable for most AFers, only in possibly very individual circumstances similar to mine - very psymtomatic, rare to have an episode and then only very short, have bathroom breaks during the night (relevant to nighttime episode awareness). Annual checkups with cardio in case other relevant factors arise and to keep up to date on changes in medical advice.
I have read a bit about this as an interested . It also involved people taking a short Kardia type ecg twice a day to check they weren’t in AF so the idea was PIP ACs would only ever be suitable for a highly motivated subset of patients. I would add likely those who push for it can’t see it being suggested. The results of Passmores work look promising but the trials were small and I don’t think many EPs would currently endorse it because of the risk of being sued if it went wrong ( patient saying you shouldn’t have agreed to it, increasingly like America in that way over here )
On discussing PIP with GP, the first thing he said was provided you continue with the anticoagulant rigorously, the beta blocker is entirely voluntary, as it is only there to make you feel better so if its not necessary then don't take it but do carry the PIP all the time.
that’s interesting. My GP said I could reduce my bisoporol as I was complaining of being tired all the time but he didn’t say anything about what your GP said. They all seem to sing from different hymn books
I have asymptomatic PAF and I am paranoid about taking my daily Eliquis - I have double alarms set to make sure I don't forget. I even persuaded my pharmacist to sell me an extra packet (off script) to keep 'just in case something happens to the production line ' !!!!!
I get you! Out of all my daily meds , Warfarin is my most important. I consider it to be my friend! My AF episodes rarely come more than twice a year but they are real nasties and normally merit 'emergency' dc cardioversions. Being anticoagulated saves alot of problems.
I had ablation September 21 and have been free of AFIB since . My cardiologist advised anticoagulants as PIP if I have further AFIB . In other words take them immediately. I’ve not taken anticoagulants since my ablation.
as someone who has suffered pulmonary embolisms 3 times (the last ones went through my heart) I would rather take anticoagulants for life. The decision was take these OR Naproxen (which was working the best to give me some sort of life due to severe arthritis in my knee) The hospital was VERY clear which option would potentially keep me alive.
I take lots of pain meds like morphine amitriptyline pregabalin and paracetamol but nothing works for me like Naproxen I use diclofenac gel now but no where near as good as the naproxen
I know you can inject fragmin as a quick acting anticoagulant (something I do when travelling) but not a pill.
I’d be the first to use pip if it was safe but sadly I don’t think this would ever be safe for me
I wish you good luck and good health
Mjames1 states they will be using only people with infrequent episodes. That was me 6 years ago. At some point within the next 365 days and nights my AF became persistent, 24/7/365, but asymptomatic. This suggestion of anticoagulant as pill in the pocket is like playing Russian roulette. A game I don't want to play with my health.
I am 62 with PAF and a Chads score of 1 due to being female. My AF is so far infrequent and v symptomatic so no mistaking when it is happening. I also monitor my rhythm during the night with a frontier x chest strap and so know I do not get AF when I am asleep. I am on no regular medication but have PIP (bisoprolol, flecanide, apixaban) as soon as an episode starts.
wow are you in UK? I am similar.
yep. I should say that my cardiologist prescribed this treatment. I did not make it up on my own!
It's good they're are becoming more diverse in their prescribing.I expect someone will come up on a progression of the apple watch whereby it alerts u if Afib is occurring so u can take anti coag.
I know this sounds like herasy but if it reduces the risk of bleeding from anti coag then for me that would be great. Having said that I'm not suitable as my Afib is far more frequent.
Of course the golden egg would be for someone to develop a drug that reduces stroke risk but doesn't increase bleed risk. Someone will at some point!
great to hear & yes I would only consider any changes with my cardiologist.
To me, if you have or have had AF, then not taking an anti coagulant is like playing Russian Roulette with your life.
BobDVolunteer
NO.. I haven't knowingly had AF since 2009 but still take warfarin. My EP did tell me I had an AF episode whilt he was fitting my pacemaker but he may just have been winding me up as I didn't know.
No No No. never ever do that. You would be playing Russian Roulette and dicing with possible death or disability. Excuse me for saying this, but what idiot put that in your head?
Hi I’ve heard of taking a soluble baby aspirin at first sign of stroke or heart attack as a life saver. I am on 30mg Edoxaban but have a srip of baby aspirin on my bedside table from before Edoxaban. I would think an anticoagulant would be too much. I’ve never discussed this with a doctor. I started Edoxaban just before Covid so never had a face to face with GP since. But hospitals do put people with strokes or pulmonary embolisms straight on to clot busting regime. I am interested to read other replies.
Clot busters are different meds . They work fast to break up the clot before it can do too much damage - this is why it is ideal to get them within 4 hours of stroke onset). Anticoagulants act on the clotting cascade to slow down clotting.
I have never come across anticoag treatment as pip, however, I must confess, that I am permanently on rivaroxaban, but if I get a bad episode of AF I add in a single asprin. I have done this ever since one of my early episodes, we called an ambulance and the paramedics advised it, even tho I was on anticoagulants
I prefer to think of it as belt & braces. According to CHADS score I don’t need apixaban at all, even in AF so.. taking it when I have an episode is added reassurance.
I have not been able to tolerate anticoagulant nor any of the rate and rhythm heart meds. It is frightening that I can not. However, I literally have fallen asleep while driving, gotten extremely despondent, dizzy, nauseous, achy etc….
Choice being no qol or no drugs.
I wear a heart rate watch 24/7 and have a supply of Eloquis, Flecanide and Metropolol handy should my heart go into AFib or tachycardia.
My instructions from my EP are to start the drugs and notify him if my heart should go out of NSR.
I monitor my heart closely and have become much more aware of triggers, responses, symptoms and self care because of this awareness. It is quite a journey.
My friend with AFib ended up in the hospital with a brain bleed from the anticoagulant.
We all are doing the best we can….
There is no perfect answer.
I'm so sorry you have these special difficulties to deal with. You are one of millions (myself included) who can't just pop the anti-coagulants. Seems you are making careful and intelligent choices. Correct--"there is no perfect answer." Best wishes, Diane S.
The other way is load a gun (with only one in the chamber) and spin it ! ; 😉
A very emotive topic I see. I should have added just a little context to my question - mine was about bleed risk (being my motivation). I used to road cycle a lot and was considering restarting an old passion, horse riding. At the moment the risk of a fall stops me.
I hear you all well. I shall be awaiting the outcome of the latest research with apple (I wear one). I also always know when I am having an episode & never self convert. Flec PIP works well. I would only ever work with my cardiologist.
I’m not playing Russian roulette just finding a way to navigate safely with a good quality of life.
Pigs may actually fly for me! 😂
Well said. It's a question of what's right for you....
As mentioned somewhere else in this thread, my own motivation (for interest in this topic) is similar to yours… I continue to cycle, but very carefully, due to being on AC, probably I shouldn’t but it’s important for my mental health and overall QOL
you should go for it with te horse riding, just be careful with your choice of horse and the circumstances you ride in. you could just as easily fall down the stairs, but im sure you wont decide not to go up!
My EP agreed ACs as a PIP was an acceptable strategy based on my INDIVIDUAL circumstances at CHADS1 (female).
Below is a rather interesting & balanced article outlining risks and decisions. Understanding the difference between relative and absolute risk in data was particularly helpful for me (the charts with the green, amber & red faces).
drjohnm.org/2017/04/should-...
Exactly! I'm a research dr. & I'm always on about how people do not understand that absolute risk and relative risk are not the same. But we keep hearing people flinging about "statistics", esp. that one that goes "AF means you have 5 times the risk of stroke, etc". Definitely not true for everyone, but it just invites attacks if you say that part out loud! Dr. John Mandrola is a careful and good critic on many topics but esp. on reading statistical results of medical studies. Thanks for posting! Best wishes, Diane S.
This is a touchy subject due to the devastating results a stroke can bring. Death is not the worst outcome of some strokes...
I've had two cardiologists and one EP tell me I don't need Eliquis daily. My AF episodes are rare and my PIP regimen to get out of the episode seems solid and effective. I also have Eliquis on hand that I will take for several weeks if I do have an episode. My ChadsVasc score is low at 0-1. I monitor my pulse many times per day and also have a Kardia device I use (my episodes historically have been very symptomatic).
Getting the LAA (left atrial appendage) clipped or possibly getting the Watchman device can assist in lowering the need for anticoagulation. Anticoagulation alone only has a 60% protection rate, and can produce serious side effects in some people with GI issues or due to injury.
If I had frequent AF episodes (even short ones) or I was in persistent AF I would be on Eliquis daily without question. More importantly, if my ChadsVasc score warranted it, I would be on Eliquis daily regardless of how low my AF burden is. Ultimately this decision should be driven by Doctor's guidance, ChadsVasc score, AF Burden and of course patient's own decision.
Stanford University is about to start a study for pip Eliquis with a wearable device w a different algorithm than the Apple Watch. My chads is 2 bc of being female and 66. I would love to ski and ride a bike again. Successful ablation i5/22. I am signing up for the study. Will let you all know
I would be interested to know how to join the research
I asked my Cardiologist about the same thing. He said a clot could form in your heart chamber in as little as 8 min. into an afib event. It takes ages for the anticoagulant to work.
Plus many people have short term events while asleep and never know it. The other scary thing is I had a stroke before being diagnosed with afib. I lost the ability to read for a couple of hours. They actually saw 5 separate clots on the MRI. If that had happened while I was sleeping I never would have know and a really bad one could have happened. A high percentage of AFib strokes are very bad.
I am on Wafarin and self test every 3-4 days. When I know I will be going skiing, mountain biking or roller blading I test the evening before and adjust my dosage and veggie intake to keep me on the low end off the 2.0-3.0 INR range. It is a pain. I asked my Dr. about switching to a 2nd gen anticoagulant which is more convent with no fluctuation hassle and he strongly recommended I stay with my current program because I can stay in the safe zone for strokes and reduce my risk of hemorrhage by tightly controlling my INR. I talked to several chemists as well and they all said the same thing. You don't really know your equivalent INR on 2nd gen anticoagulants so they strongly recommended tightly controlled Wafarin.
I was also given a Coaguchek and Get a free weekly test strip from my health provider. After I broke my original Coaguchek I bought on Ebay and buy test strips there as well. I've been doing that for 5 years.
If you aren't at a higher risk of falling it probably doesn't matter. If you are bleeding a lot I would talk to some one at an anti coagulant unit or chemist. I am a vegan and don't measure and calculate my greens intake so my INR drifts and I need to test often.
I hope I didn't scare you but better safe than sorry. The other question to ask is how much do anticoagulants contribute death due to accidents. People die from accidents all the time who aren't on anticoagulants.
I don’t fully understand- you meaning that one has an anticoagulant in their poster ready to take if symptoms of AF?
Hi there, I had an ablation in August 2022. Have been afib free since then. I was on flecainide (100 mg 2x d) and metoprolol 12.5 mg 2 x d) and Eliquis 5 mg 2x d) Have slowly been weaned off medication. First, they reduced flecainide by half, now I'm off it completely as June 12. And now I'm just on Metoprolol and Eliquis. In a few months, they will.get be off the beta blocker. However, both my cardiologist and electrophysiologist want me to stay on Eliquis. Hope this helps.😊
sounds positive good luck 🤞
Thank you! And to you as well! 😊
Anticoagulant as a PIP wouldn't have helped me. Part of my occipital brain tissue was toast the moment I stood up and an AFib heart clot tore into it. Never felt it coming.
Hi
I read Research sometime ago to use it as PIP. But as I am persistent that wouldn't work.
I guess if you are 'on to it' immediately with AF,.
I know, you wonder why you take all that unnecessary med.
You say that you take a BB as metoprolol gave me 2 x 2 second pauses night on my
24-hr monitor.
cheers JOY. 74. (NZ)
I'm in California, so this isn't strictly relevant to your question, but as a point of reference, it's pretty standard here to take anticoagulant as PIP. I have a pre-printed handout from my cardiologist saying to start taking it after 2 hours of afib, and you must have an Apple Watch or Kardia. My CHADS is 0, and I'm guessing this approach is only for people like me. Even with good insurance, Eliquis costs about $500 per month, so that's a factor.
this is the first time I’ve ever heard about this ,a pill in a pocket.
Good question. I had a single episode of AFib six months ago. I had to undergo Cardioversion and was on discharge placed on apixaban and bisoprolol. Follow up tests showed no underlying heart issues and my ChadVas score is 1 as I'm 65. My cardiologist at follow up recommended that I didn't need to be on an anti coagulant. My GP supported this however I was wary of stopping and advised that I would wish to see an electrophysiological. The advice from the electrophysiologist was that it was reasonable to stop anticoagulant based on ESC 2020 guidelines. In addition I had previously reduced to 1.25 mg bisoprolol which I wanted to stop completely as it causes bradycardia and he was agreeable to this. So I am no longer on medications but I still remain a bit wary re stroke so my approach is to, monitor my heart using smart watch and to have apixaban available if I experience afib again. From web clots take between 24/48 hours to develop and apixaban starts to work fairly rapidly when taken. I see that up to 10mgs of apixaban can be safely taken in one dose and that would be my initial approach should I detect afib. So that's my approach and I have found the Dr John articles above helpful. I have to work on the basis that medical specialists such as electrophysiologists and cardiologists have a breadth of experience of different presentations of AFib and can make much more nuanced judgements on needs for medication than individuals drawing purely on their own experience. I should say that the evident trigger for my afib episode was a binge of alcohol the previous evening and I have not touched alcohol since.
this is an interesting & very individual approach which sounds right. My worry is all too often we’re all just treated the same. I’m young enough to hopefully see changed in the future.
Bisoprolol is well known as a pill in the pocket. I would not consider taking blood thinners in the same regime. My Consultant told me the twice daily Anticoagulant was essential and on stop taking it under medical supervision like when I had to go for an operation and had to stop 3 days before day of op.
I already have PIP flecanide works well for me instead of it daily. I’m very sensitive to drugs.
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