I was diagnosed with P. Afib two years ago and have avoided taking blood thinners. After recently having an EP study and cardioversion the cardiologist wants to put me on Redoxaban as I refused to take Eliquis. I have a pathological fear of taking blood thinners. At the sign of blood I would have to stop them. And I've read that it's dangerous to stop as it can cause clots and also Ischaemic strokes. Also it causes palpitations which is what I'm trying to avoid.
I have not seen any evidence of people having a good experience on them, just negative and clearly dangerous episodes. I read an article that the FDA in the U.S wants to make the Phyzer manufacturers of Eliquis have a Black Box warning as it causes so many cranial bleeds, and has no antidote. There must be another way surely? They are clearly poison.
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Art_lover2022
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I hate the idea of thinners as well, however if you need them then you need them because of the increased stroke risk.
Did they compute your risk (CHA2DS2-VASc) score? That is a good starting point for decision making. A good ep will also take into consideration your overall afib history and perhaps some lifestyle factors.
If you and your ep cannot come to an agreement, a second opinion is always a good idea.
Lastly, I may have misread what you said, but it sounded like you think that the act of stopping thinners will increase your risk more than if you never took them? That's not true. Whether you don't take them, or stop them, your risk will be the same.
Slightly different, I've been in permanent A fib for probably 5 years now never in Sinus rhythm! I'm on Rivaroxaban.I have to have an operation on my arm so have to stop taking the Rivaroxaban 3 days before and probably for a few days after, this gap in the medication really worries me but I suppose I've no option!
Those decisions are best left up to the doctors, but it would seem that statistically you should ok since your 3-5 days off thinners represents only about one per cent of your annual risk.
It is normal to come off before ops. If you don't you will bleed too much during the op making the surgeon's job more difficult and the procedure more dangerous for you. Lots of us have come off for ops. Usually afterwards you get anti coag jabs then resume your normal treatment.
Thanks for your reply. My cardiologist is very abrupt and dismissive. He was not interested in my lifestyle changes, where I have lost 5 kilos and reduced my cholesterol dramatically all through healthy eating. I will be seeking a second opinion and hopefully a more empathetic one. I did read that premature discontinuation of Edoxaban increases the risk of Ischemic events and should only be stopped for pathological bleeding, which is why I'm so worried.
Hi ArtLover. Anticoagulants don’t thin our blood, they stop blood coagulating so readily. I take Apixaban and have not found everyday cuts cause excess bleeding. Most recently I sliced my finger on a tube of lick-e-lics that I was feeding the cat and I just applied the usual plaster and it healed in no time.
Because I have worked closely with people who have suffered strokes and seen friends and family members struggle to reclaim cognitive function, speech and motor skills following stroke I choose to take an anticoagulant. But I’m in a high risk age group and find any inconvenience of taking Apixaban very minor. The risk of a bleed is far less than a stroke for me, but you are best listening to professional advice.
I agree with rainfern , blood thinners is a provocative statement ! And I have been on apixaban for about two years and don’t seem to have any side affects , no extra bleeding from anything . The consequences of a stroke is more scary for me ,
I worked in a nursing home for 10 years before I retired. Having seen the results of a stroke I will always gratefully take my anticoagulants. People are left unable to speak, move, are fed through a tube in their stomach and are doubly incontinent. They look out on the world with confused eyes, mostly unable to understand anything being said. Never ever, would I want to be left like that. I hate taking any pills but the ones that prevent strokes happening to me I swallow gladly.
I'm on Warfarin, an anticoagulant that has been around for many years and I bleed no more than anyone else.
Yes Jean, it is horrible having a stroke. I worked as a PSW and saw many patients who had strokes. It is truly devastating and I will always take my anticoagulant (eliquis) no matter what.
Never ask a lady her age. But your age is very important here. As are any other risk factors you might have for stroke, eg high blood pressure, diabetes, hear disease. Check out your CHADS-Vasc score and discuss it with your medical team in order to make an informed decision that’s personalised to you. Nothing in life comes with a guarantee, so any medical intervention has to be a balance of positives vs risk.
I have had PAF for 12 years and initially the advice at the time was aspirin. Having joined the old Yahoo AFA group and as a retired Nurse Specialist ( knew nothing about cardiology mind you) I was keen to be on an anticoagulant. I was on warfarin for years then a York Cardiologist suggested to swapping to Apixaban which seems to have suited me well. No not poisons, a means of maintaining quality of life for me. As DOACs have such a short half life the issue of no antidote is really not a huge issue as support therapies can be given if there was a large bleed, until anticoagulation out of the system.
You however will have to make your own decisions. Because you have such strong feelings about anticoagulants you may find this bit of research interesting
If you mean the aspirin, at that time (2011) I was told the guidance was such that as I'd only had 2 episodes, both before effective treatment instigated, aspirin was sufficient. It was 2 years before I had another episode and it was at that point warfarin was advised.
In the first sentence of your post!!!! Aspirin may thin the blood but does not protect against clotting and so is not a prophylactic treatment for AF. That’s why I was surprised the advice at the outset was aspirin.
As far as I know Aspirin does protect against clotting. Maybe the NOACs are better or more effective, but that does not change the fact that Aspirin too protects against clotting.
there is a reversal antidote drug for apixaban as I had a nasty fall causing a brain haemorrhage snd was taken into hospital snd given the drug. I was kept off apixaban for 2-3 weeks whilst my head healed snd then they restarted apixaban
Thank you, there are various management of haemorrhage pathways if on DOACs or warfarin used by NHS trusts available by searching online DOAC reversal or similar which are interesting and reassuring. I wonder how readily available the reversal agents are , but they are certai ly not the first thing that is tried.
I have been taking Apixaban (Eliquis) for years. I take sensible and normal precautions against injury and am careful about head bangs or bumps, going to A&E for a scan if the injury seems bad, but otherwise following the ‘head injury guidelines’ which explain what symptoms to be concerned about. Strokes, whether large or small, are life changing so I’d prefer to avoid one if I can. And btw Apixaban does have a reversal agent.
Lots of good replies here, and of course it is a balance of risks depending on age and any other conditions. Though I believe there is now an antidote for apixaban (Eliquis). I take it, and don’t notice any difference in healing from cuts etc.
I was relieved to go on it when I was diagnosed last year, though I only qualified due to being female and over 65. Both my sisters had strokes - one at 64 and the other at 65, with undiagnosed AFib. One was luckily mild, and the other although a major stroke was caught in time with clot-busting drugs. Though one suffered another stroke in her late 70s (I don’t think she was taking her anti-coagulants), and this time did not survive it.
I had a retinal vein occlusion, likely to have been caused by AFib - another reason for me to feel that I am high risk, despite having no other co-morbidities.
The scoring system is there to work out when the balance of risk tips in favour of you taking anti-coagulants, though of course it is always your own decision.
Thanks for your reply. My Chad score is 2, my age and being a woman. I have no other conditions, have a very healthy diet and exercise regularly. The problem I have is there is no support from the cardiologist when I told him my concerns about taking anticoagulants he told me not to read to bumf! You also can't get a doctors appointment, so what happens if you have a bleed? only option A&E. Going to get a second opinion.
I have the same score of 2, over 65 and female. My cholesterol and BP are good, with no other comorbidities. I think that when strokes have hit other family members out of the blue, then you tend to worry more about clots than bleeding. I had also had a retinal vein occlusion at 64, so had been feeling it hanging over me. Was relieved that the AFib diagnosis at 67 meant that they were recommended.
I think that a bleed would mean A&E anyway. There is hardly any difference with cuts, bruises or when they take blood. Just press on the area for a little longer. A really hard knock, especially to the head, should be taken seriously of course. But then it should be anyway.
Strokes due to AFib and caused by clots are among the most devastating.
I think that I could get a same day GP appointment in an emergency, maybe it depends where you live.
hello Art_lover, lots of sympathy for your dilemma. I’m from the UK, so I don’t have first hand experience of the US healthcare system so wouldn’t dream of interfering or suggesting what you should or shouldn’t do to protect yourself from the single most harmful health risk associated with AF ie Stroke. Here in the UK, the NHS who provides the vast majority of healthcare treatment from government funds paid for by the UK taxpayers, pay thousands of millions of UK £’s to provide anticoagulation medication to help reduce the risk of stroke on the basis that the cost of treating stroke victims would be significantly higher.
There is probably nothing I can say that would encourage you to take a more pragmatic view to do what’s best for you, but for many here in the UK, anticoagulants, whether it be DOAC’s or good old fashioned Warfarin, are generally deemed to be far more beneficial than the alternative…..
I live in the U.K and am being treated on the NHS, that is the problem. They throw pills at you and you're left to get on with it, no support. When I was diagnosed 2 years ago I was sent away from the hospital with Beta blockers and Eliquis. Told I had to take them for the rest of my life to prevent a stroke. I was devastated. All my education about Afib is from a book The Afib Cure, not from Doctors.
A key issue must be if you are having any AF episodes at present and if so their duration.
This debate is one of the most common here and the best answer I have read is that there is no substitute for a full discussion with your trusted heart specialist taking fully into account your own feelings. The right decision for you individually should then become apparent. Well worthwhile spending $$$ on a private appointment.
I was diagnosed with P/A/F over 20 years ago it eventually led to a stroke in 2000 and from that day on I have taken anticoags, firstly Warfarin and now Pradaxa, I am 80 next year. Thankfully the stroke left me fairly intact, spent two weeks in hospital and had to retire from my career as a consequence, I was 56. Before the stroke I was taking under cardiologist guidance, 375 mg of Aspirin daily and I think this helped thin my blood, should I have been taking Warfarin instead I don't know but the feeling was I was too young to faff about with constantly having blood taken, a must with Warfarin. So, as much as I hate taking drugs, and believe me I do, I would urge you to think carefully about not taking anticoags because they might in fact save your life one day.
'So many intercranial bleeds' is actually around 0.4 or 0.3% in the samples for the study I read. (Now nearly 10 years old). This was less than with aspirin and less than with Warfarin. And of course you have to balance that small risk with the very elevated risk of stroke (2.7% p.a.) There IS an antidote for apixaban now, though you would need to read the article to see how effective it is or not. ncbi.nlm.nih.gov/pmc/articl...
I have taken apixaban (5mg twice a day) for 3 years now and although I suspect it causes giddiness it certainly does not cause palpitations or any other symptoms of any real concern with me, any more than it does with a large sample of patients.
All these risks are in fact relatively low but do bear in mind the consequences of both stroke or an intercranial bleed can be fatal or permanently disabling. It is a very difficult decision and you should not allow anybody to force you into a decision. Mine was clear as having had one stroke I know the risk is far more elevated of having another.
It's simply because I started taking Apixaban in hospital 3 years ago after my stroke, but every morning since I have woken up with giddiness and tightness around the eyes and head. I have long since recovered almost completely from the stroke (I'm a very lucky person!) but the giddiness stays with me particularly first thing in the morning. Sometimes when I am making a physical effort like a 40 minute walk. It could of course just be the effects of AF, but stopping the anti coag. just to see if it is would be quite risky.
The NHS in the UK records giddiness as a side effect but links it to possible anaemia caused by taking it, which has not shown up in any blood test I have had.
Thank you. I bet your doctors here don't acknowledge that. When I told the doctor at the Urgences yesterday that Apixaban gave me digestive problems and severe back pain she looked at me like I was mad.
Never caused giddiness for me (yet). I am on Eliquis. I was giddy, faint, fatigued and breathless on bisoprolol and other beta and calcium channel blockers so taken off these after about a year (felt worse on them than with just AF). On statins I keeled over a couple of times - once in the bank and once in the supermarket so stopped them too. Once off them the giddiness and fainting stopped. I have also not noticed that after 7 nearly 8 years on Eliquis it has caused me to bleed heavier or for longer. I have even bought special ointments, powders and dressings should I cut myself whilst attempting DIY and gardening but even though I have done so quite badly at times I have never needed to use them so before they went out of date I gave them to a cousin to use as he has worse problems than I do. I would however go to A&E if I bumped my head badly - so far I have not yet.
Perhaps it might be statins that are making me feel so lousy recently then. It is very difficult to narrow things down when we are all on a cocktail of interacting pharmaceuticals!
Everybody reacts differently of course, but I was rather heartened recently after an accident. I bleed very heavily from a simple cut or graze so I have been terrified of having bumps on the head and falls though I am very active in garden chores and DIY nonetheless even though I am 77.
I managed to fall about five or six feet from a step ladder that managed to collapse under me ten days ago and came down very heavily on my back and side, with my teeth rattling in my skull and quite winded. I recall thinking, 'Oh God! That's it then!' and I was convinced I would start to bleed in my spine where I had hit it very forcefully in two places or internally as my stomach and diaphragm were very painful after being winded. I managed to get up and seriously considered calling the emergency services, but my wife gave me some tea, I took my pulse and BP, and all seemed normal, so I just rested for an hour.
Although I suffered very painful and colorful bruises and my back was very sore for ten days or more, it has reassured me that apixaban does not necessarily create such huge dangers as I thought and although we should all be more careful, our bodies are more robust than we think.
I would really not recommend such accidents to anybody else! I was lucky and have determined to take more safety precautions in future. But a blow does not mean you are likely to bleed from that location. Just be careful to avoid it.
You sound just like me. Still doing all those things you did at 30 with gusto and we forget that we are older. There was a joke on faceache not long ago about so many men going to A&E because they thought at 70+ they could still do all the things they could when they were younger. After I reached 70 I have fallen off roof ladders 3 times - once breaking a couple of ribs and ending up in hospital for a few days as they thought I could have punctured my lung - luckily not so. Actually the mens' ward was full of men my age and older who had fallen or whatever trying to do all those things. So yes take extra precautions and make sure some one is with you. My wife didn't even know I had gone out to adjust the aerial on the roof after a storm when I fell off and broke my ribs! A short time later myself and an older neighbour replaced a chimney pot together - I did look at him as we were balancing balletically on the ridge tiles and tell him that there was about 146 years of idiocy balancing on that roof! Thankfully no one was hurt that time.
The thing is you just can't get anyone to do jobs. The chimney had been damaged by birds and we needed to light the fire but I think we would have had to wait at least 2 months before anyone could do it - unfortunately, the house used solid fuel heating so we couldn't really wait that long with no heating - we had rented the house out during the summer as we lived with my parents to help look after them and someone who needed accommodation urgently asked us if we would let him and his son stay for a short while so we let them but they just didn't look after the place so we were left with a lot to sort out when we came back. My neighbour had told him to scare the crows off the chimney pot but he was ignored. It was the same trying to get slates replaced too. My wife's Uncle - who is obviously older than myself used to be a roofer and he often came out to help replace slates for us and other relatives because we couldn't get anyone out to do it long after he was retired.
Ha! Ha! This is SO true and you capture the situation perfectly. I am relieved to hear I am not the only one. As you say, there is nobody else to do many of these little jobs unless you are prepared to pay sky high rip off prices just to have a few slates pushed back into place after a storm. I don't like going on the roof now as I feel very shaky but sometimes needs must. And trees have a tendency to blow down into ponds and rivers and have to be cut up and pulled out. Last year at this time I managed to nearly cut off a finger on the log saw and this year, thankfully, it was just the fall from the ladder with no harm done. I really never think of myself as 77 and am baffled when I feel tired or giddy when working fairly hard. Doctors don't understand this, especially young ones, as my local French doctor just tells me I should take an afternoon nap and sit down to watch the TV or read a good book. He has not the slightest idea what it takes to maintain a garden of over a hectare and several large buildings one of which is holiday accommodation. People like us really don't have time to be ill! 😀🤣
I have paf. I am 68 and female with no other known health conditions. I have traced my family tree and have death certificates for 3 generations. Looking at that I thought there seemed to be a few incidences of cerebral haemorrhage on my direct lines. Mentioned that to the EP at the time and he still said I should go on apaxiban even taking that into account
Hi art. If they have calculated your chads score and recommended anticoagulants then I would take them. They don’t give these out if they’re not needed.? Any stroke is serious but Strokes from AFIB can be totally life changing unfortunately and even fatal.!!!
Try and speak to someone about your fears. I was on anticoagulants for a few years with no problems at all And wouldn’t hesitate going back on them if needed.
My Chad score is 2 Just being a woman is 1 and then over 65 1. I am healthy apart from PAF. Unfortunately I have become very anxious and depressed since being diagnosed and I have constantly spoken out, but heart specialists are not trained in mental health issues and are not listening to my fears,
I know what you’re going through Art and it’s not easy.!! Iv suffered with health anxiety issues since losing an eye as a child and it spiralled from there.? The fear and dread sometimes was overwhelming. I still worry about things now. But in recent years iv been trying to think different and talk myself round to rational thinking. It’s not easy but it’s worth sticking at.👍
First of all apixabsn eliquis is NOT a blood thinner. It is an anti coagulant
Secondly there is a reversal drug
After a really nasty fall I had a brain haemorrhage and I was taken into hospital and given this reversal drug. I was kept off apixaban fir 2-3 weeks until my head healed
Incidentally I was told by my EP that apixaban was the kindest of all the anticoagulants especially regarding the brain and stomach
You want to avoid a stroke so please take notice of your EP/cardiologist
Quite out of the blue I had a stroke due to undiagnosed AF. Thankfully, due to my wife's prompt action, within one hour I was in AE stroke unit. I now take blood thinners (Apixaban) and have had two successful ablations, without any problems . Trust me, not taking blood thinners is literally dicing with death.
There is an alternative PIP approach to anticoagulation which is currently being practised by a very small minority of AF sufferers in USA, Australia, UK, Canada (just the countries I know from Forum members), usually because they cannot tolerate daily anticoagulation. And usually with support from their Cardiologist or EP.
There is currently a trial proceeding in USA using Apple Watches to appraise this practice, but official results unfortunately are forecast to take years.
Here's the article that announced the research project ...
Thank you. I have read about this and it sounds far more acceptable. I hope I can find a supportive cardiologist who sees how hard I've worked to maintain a healthy lifestyle and the triggers for Afib.
Eliquis is medication that actually has very few side effects and it’s tolerance amongst patients is quite above the average.Of course bleeding is in back of everyone’s mind but on the other hand it was the blood thinners that turn dangerous and often fatal disease (mostly due to strokes) into manageable nuisance
My insurance requires me to test the other anticoagulants before they will give me Eliquis. That's probably because Eliquis is the most expensive of them. All the other anticoagulants made me feel sick in a variety of different ways, especially stomach cramps. Eliquis gives me no problems at all. I do bleed longer if wounded, but it still heals eventually.
A stroke can be a life changing event! I have taken edoxaban since 2017 with no I’ll effects it’s once a day and if you have to have surgery or dentistry it’s easy to stop it for a day or so. Having seen the devastating effect of a stroke on my Dad, (rip) there is no option!
Have tried Rivaroxaban and Apixaban. Side effects with both.
It is inevitably a problem balancing the likelihood of a stroke against having side effects every day - with the possibility the side effects you notice are only part of the problems they are causing.
Especially as, for any one individual, there might be no benefit to them from a DOAC (if they were not susceptible to a stroke).
This doesn't question that on a population basis there are pretty clear reasons to accept DOACs.
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