AF Association
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P A Fib. Still confused.

Haven't posted for a while as I'm still so uncertain about anticoagulants. Diagnosed last year. With PAF. 72 years old female. No comorbidity. Walk on average 30 mile weekly. Good diet butility do like my evening glass of wine which doesn't bother me at all. Episodes 3 to 4 months apart. Taking 1.25 Bisoprolol as I have a natural slow heart rate. Statin to be on the safe side and a baby aspirin which i know is as good as a snow ball in he'll but it makes me feel a bit more secure . Doc gave me apixaban 3 weeks ago. 5mg twice daily and I'm still looking at the unopend box. I weigh 52kg. Can anyone out there talk some sense into me cos I'm driving myself mad. 😅

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Aspirin as you know is no longer recommended (as no benefit) but apixaban or similar is if your CHA2DS2VASC score is >2 and yours will be 3 based on age 75 and female. So the recommendation from all guidelines is to be on an anticoagulant if you want to reduce your risk of stroke and have no contraindications.

Your annual stroke risk is 3.2% according to the tables.

A stroke is a terrible thing, but your risk of problems from anticoagulants is small.

What's the problem in stopping aspirin and starting apixaban or similar NOAC?

Statin has no place in AF management, but only in vascular disease or raised lipids

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I did leave a reply goldie but it's not on the page. My apologies if it turns up later, thanks for the reply, much appreciated.

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You have a straight forward choice. Either do nothing and have a high risk of stroke or take it and have some protection. Aspirin does more harm than good and is no help at all whilst potentially causing you damage. You can always stop taking anticoagulants but you can't undo a stroke.

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Your right Bob, I also realise that once I start taking g them I should regain some of the confidence I have lost since my diagnosis. I guess it knocks us all for 6 at the beginning, as my mother who also had AF used to say JUST SHUT UP AND GET ON WITH IT ! Incident ly she has just just died aged 97, thanks for your comment.

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Far better to find out about AF than discover it with a stroke. At least you can do some preventative stuff now

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Your right, I guess there's a lot of people out there where wish they had known, thanks for the comment Goldie x

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I am 69 with PAfib and no other health problems. My doctor told me to start taking anticoagulants when I reach 75. There are many opinions on Afib, find a doctor you trust and that listen to your concerns.

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You know Slattery finding a doctor you can trust is the problem. I have seen 2 doctors in my practice and have had different advice off both that's the confusing part. Who do I trust.

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I think our age comes into this decision a lot- at our support meeting I asked our medical lead why younger people are not so much at risk of stroke with AF if it still causes the blood to slow down in the atrium. He explained it is because the heart lining, like our other skin, gets roughers we age- therefore the slowed down blood can find something to stick to and form a clot- which then breaks off and travels.

Doctors who say wait until 75 maybe think we all look young and beautiful but I know my skin has changed a lot- so presumably the lining of my heart has too!!

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Ouch. Tough but true. Doesn't matter how young you are or how fit you are and how much you work at it. It is what it is. BUT . It's how we feel and if keeping fit and healthy makes us feel better bring it on. At 72 I feel great. Just need to come to terms with this beast on my shoulder. But it won't get the better of me . 😅

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Interesting what you say about heart as a resus doctor told me I have the heart of an 80 year old (46) and described AF as having wrinkles on your heart instead of the face.

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I have a friend who is 41 and they told her the same, all in the genes , the whole family have heart problems but she just gets on with it, I admire her greatly. Thanks for comment.

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That sounds about right. I had a weekend in hospital a couple of years ago with BP and AF out of control.

The night staff nurse had a walk around and a chat with patients before going off to the nurses station. She came back and said I've just been reading your notes, are you really 80? I confirmed it and she said I hope I look as good as you if I get to that age.

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Good for you. It all obviously works 😁

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I could relate to this Rosy lol, now 73 but my stroke doctor told me he will need to change the anticoagulant I am on when I am 80, damn good thinking doctor hehehe at least he thinks I will get there!!!

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Of course you will. Good thinking.

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As the others have said these days aspirin is not recommended for AF.

In my opinion you should seek advice on the best anticoagulant regime without further prevarication.

When you do see a doctor get the Bisoprolol checked out too as it is a rate controlling drug, normally slowing the heart rate, and my non medical brain suggests that if you have "a natural slow heart rate" then there is a possibility that you could suffer from Bradycardia.

This is certainly what happened to me as my heart block caused bad conductivity and I was taken off Bisoprolol as it was slowing my heart too much.

Mind you that is all history now as I have been in Atrial Tachycardia for 6 weeks now.

Hope you can get some sound medical advice soon.

Pete

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I have a very poor internet connection here and your reply like goldies seems to be in cybersp somewhere so at the risk of repeating myself you may have hit the nail on the head. I have a BP of 130/52 and resting heart rate of 52. With no meds. I have been woken after minor surgery to ask if I had a low BP and was i an athlete. Defo something I will look into. Thanks Pete

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Before I had my pacemaker fitted nurses used to as if I used to be very fit because of my low heart rate. I denied ever being in that category.

My marathon running doctor is very proud of his in the 40's heart rate.

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mefinks you might have taken one by now......I've been taking apixaban for over a year now with absolutely no problems whatsoever.....having worked in patient transport for a few years after I retired I have seen first hand the consequencies of having a stroke.....it can be a life wrecker for not only the patient, but for their families too....your decision, just hope you make the right one for you and your family......and bin the aspirin asap!!! I'm not medically trained, but I understood statins reduced cholesterol.....as far as I know, no connection there with AF.....best wishes

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Your right I should know better. I ran the warfarin clinic at our local hospital for years. But I think Potty Pete might have come up with something there.but I will ditch the aspirin. Thanks

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I take anti-coagulants - Apixaban - and had absolutely no reservations.

As others have said before me - you can't undo a stroke.

I refuse to take statins and Bisoprolol - both are contraindicated for me because of an other condition anyway but the side effects and long term risks of taking them and risks involved with aspirin alone made me refuse them.

I am finding it very hard to understand your thinking and reluctance to take an anti-coagulant?

What is your concern?

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Hi CDreamer, do you know I carnt even answer that, fear I guess but the fear of a stroke is even worse, maybe because episodes are months apart I am convinced I don't need them but I know that's silly reasoning. I am going to phone doctors this morning and ask for a once a day tablet , I travel a lot and it would be more convenient for me to do that. I am going to take them though if only to give my other half a bit of piece, I'm driving him mad. You have all been so helpful.

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What do you prefer Warfarin or NOACs?

How many of your patients switched drugs and why?

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Absolutely agree with all the comments about taking the blood thinner Apixiban to prevent the horrendous possibility of a stroke.

I am an otherwise fit and healthy female in my late 60's, so like you I have a higher stroke risk. I started taking Apixiban 8 months ago. You should have blood tests done after one month to reassure yourself that it is not affecting liver and kidney function.

My mum had A fib and she was 92 when she died, after stroking out just 2 weeks after they took her off old fashioned warfarin which she had taken for 30 years. Watching her slowly die over 5 weeks was just awful.

My dad also died after a stroke. When my EP said I would be on Apixiban for life I felt heartily relieved to have some protection against a stroke.

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Hi Maggiemunro, you have the same family history as me, my Mam had AF and so did my Dad. Made my mind up though, going to start today, if it hadn't been for this forum I would be still pondering. Thanks

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Ps seasider. Your mum being on warfarin for 30 years is lovely to here and such a great age. So sad to end with a stroke though .

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Sorry that should have gone to maggy munro.

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My AF was only diagnosed after I had a stroke. I think I would have taken th anticoagulant if I had known...

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So sorry to hear that beehive. I sincerely hope you are ok. Listening to all the comments including yours has been a great help. Be well .

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Dr Sanjay Gupta of York Cardiology has made a very good youtube video about the difference between symptoms and risk. Symptom-wise, you can be feeling fantastic - fit and healthy. But with AF that doesn't affect the risk of stroke. You can't base your idea of your stroke risk on the way that you're feeling, they just don't match up. Hope that angle helps.

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He also says that AF in itself does not cause strokes it is the company it keeps.

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I have watched a lot of his video's he is very good.

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guysandstthomas.nhs.uk/our-...

I have posted this link many times, I found it most informative so hope it helps you too.

I have PAF and started the same way as you, first 'attack' in 1997 and didn't have another for a year then diagnosed with PAF and after that I had regular episodes mainly evenings and night time, was prescribed 375mg soluble Aspirin together with a beta blocker, various over the years. PAF caused a stroke in 2000 and from then I went on anticoagulants, rather take them than risk a stroke. So, the contraindications with PAF can be life threatening, my advice would be to take the anticoagulant as it has kept me safe for 17 years, had it changed recently due to a series of mini strokes and now on Predaxa. Sometimes we do have to listen to the professionals because where this condition is concerned it can be unpredictable but with anticoagulants I certainly feel a lot safer.

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Opal. Your right it is a good post especially for people like me who are stubborn. But as I said in my last post I have just taken my first apixaban. It's a start eh 🙌

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I have paf and take apixaban no side effects. The reason they prescribe it is because we are at risk of a stroke she seriously consider taking apixaban. I have recently been prescribed anticoagulant as when I'm walking my HR goes up to 160 or higher. I hate having to take these tablets but with AF we have to. I am 67 and do a lot of walking.

Jen

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Sorry on my last reply ment to say beta blockers

Jen

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Stivvy, I heaved a great sigh of relief when the cardiologist put me on warfarin a few years ago. Why relief? My father had a massively disabling stroke and took seven years to die. If you had seen him during those years, and the effect of his disablement on my mother, you wouldn't twice about taking anticoagulants for your A Fib. My waking nightmare is to end up like my dad but, thanks to Warfarin in my case, it is less likely that I will spend the rest of my life paralysed and and speechless! Just do it, Stivvy. Just do it!

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Thanks Raysy. Took my first one this morning. Feeling very nervous but to be expected. Must have been awfull for the family. Take care and thanks for that.

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Good to hear that you have come to terms with being on some form of coagulation for "the duration" , which is how my cardio bloke put it. I am totally confident that this will be a much greater duration than it might have been. BTW have you thought about self monitoring your INR. The monitor is fairly expensive (even without the need to pay VAT) but it's good to know where your INR is at without having the hassle of seeing your doctor or nurse every time. Not all GP practices support self monitoring but if it does and you can afford the kit you might find, as I do, that I feel more in charge of my condition There are stats to suggest that people who self monitor spend more time in INR range than those who don't.

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Apixaban I thought doesn't need self monitoring just a once yearly check up. Hope I'm right.

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I had a horrendous experience with warfarin last year. It caused a hemorrhagic bleeding in my eye that had to be corrected by surgery and alimentary symptoms leading to rectal bleeding. My risk of stroke is also below 5% like goldie. The question is, "Is it worth treating a condition that is not statistically significant or not considering that anti-coagulants have their own risks in my case?" I'd be interested in finding another anti-coagulant, but without the side effects. Against my better judgment I started warfarin therapy without getting a sensitivity test. I had my doubts about this therapy given the potentially lethal side effects.

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So sorry to hear that. Hope your ok now. Don't you take anything at all now. It must have made you very insecure about taking anything else. Stay well.

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I hope you'll find, Stivvy, as I did when I moved to Rivaroxaban, that your hesitation and reluctance is replaced by confidence.

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Hi Relim. I started the apixiban this morning as I already had them off the doc will see how I go . Fingers crossed x feel quite proud of myself.

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Congratulations! Many people seem fine with apixaban and I hope it goes well for you.

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Hi again Rellim. Following our conversation, told you that I had actually started with the apixaban 🙌 which I did for 2 days, all was fine but it was the twice day that put me off as I travel a lot and at times wouldn't fit in with my lifestyle, spoke to Doc today and have picked up prescription for rivaroxaban which I know you take, you seem very happy it, as you know by my posts it's all new to me so still very nervous as I know you all where at the beginning, the box says 1 day but not when, any advice please, cheers Mau

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I read somewhere that it's best taken with the evening meal, but I find that a bit awkward when out for dinner. It is supposed to be taken 'with food' i.e. in the middle of a meal. As long as you remember to take it every day at the same time, I don't think it is too crucial if you prefer to take it with breakfast.

I've found nothing to dislike about Rivaroxaban and it feels very good to have that feeling of protection. I was very bothered when I first took Warfarin but all my fears proved groundless and although I never did well with it, nothing dire has happened in the four years I've been anticoagulated. I switched to Rivaroxaban two years ago and found it much easier.

Good luck!

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Thanks for that Rellim. If that's the case around 11am would be best. Thanks so much for all your comments this time as well as a few months ago. You have been very helpful. Much appreciated. A F can be a lonely experience if you don't know anyone who has it as well to talk to.

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The forum is a great source of support.

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Would be very interested to hear how you do on apixaban. After putting it off for some weeks, I reluctantly started rivaroxaban a week ago and so far am not happy - headaches, dizziness, hangover feeling, diarrhoea. If this continues, I will have to try apixaban or dabigatran.

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I will keep in touch with all you lovely people so will let you know. The support has been amazing Katherine.

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Hi . Decided to switch to rivoraxiban instead of apixaban because of my traveling. we are both about the same Kath. Just started the journey ! Will let you know how I get on. Starting them tomorrow. Hope your symptoms have subsided a bit. MAU

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I did not do well on any NOAC but Rivaroxaban was definitely the worst. Eliquis less symptomatic.

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Blood thinners reduce the chance of stroke by 60%. That's a no brainer for me.

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Your right Betsea 👍

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Everything everyone has told you here is excellent advice. Read the research, it's easy to find online. i signed up with Medscape and get daily alerts on a number of health-related topics including a-fib and all the anti-coagulents. I dont trust my docs either, but i researched for over a year and the studies backed up their advice. Apixaban so far has been the 'safest' NOAC. The aspirin (useless) and statins are more potentially harmful than the Apixaban. For the past 2 years ive gone to the gym daily, eaten 'clean', and lost over 40 lbs -- hoping to get rid of a-fib (which i never feel) and high blood pressure. I feel and look good (relatively speaking, for my age-70) but the conditions are here to stay. Im at 4 on the Chadsvasc scale, so i finally started taking an anticoagulant. Good luck! But dont wait too long.

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Hi Psage. As you will have seen on some of the previous posts I started apixaban this morning. I am Chad's score 2 but that's just age and gender ( it's a man's world ) 72 and female. Took my FIRST tablet this morning then went out for a long walk in the pouring rain to take my mind off it. SAD

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if you havent done so already, let your md know you just started the med now and not when he gave them to you so your health record is accurate. and consider wearing a med-alert bracelet with the med info on it in case of accident. take care and follow the instructions for taking the medication.

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I Rang docs this morning P sage, make sure they knew, haven't got a med bracelat yet, but I don't go anywhere without my mobile ( heaven forbid ) I have a cl e ar back protected on my phone so slipped the med alert card in for now, it's visible now on the back of the phone, thanks for thinking of me though, it's much appreciated.

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Don't drive yourself mad. I live in the States and if my translation of PAF is correct you have paroxysmal atrial fibrillation. I have (had) that. Mine episodes were often within days of my menstral cycle. Mine would get so bad I had to have an ICD. I pray for you that medication helps you and they find one that does the trick. I wasn't so lucky. Just this past week I had to have a sympathectomy to stop my adrenaline from going to my heart. I'm also pace dependant. My best advice is to watch for warning signs if possible and see if there is a pattern so you can tell your doctor.

I am calling UCLA hospital today and I'm going to do my best to help them with trials so they can fix this or hopefully find the cause and cure it. My best wishes and prayers to you.

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Sounds quite complicated Rubylady. Some of the terminology I didn't understand . I wish you well and thanks for the advice.

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I'd like to find a sensitivity test, so I can rule out anti-coagulents that pose threats to my well-being before starting therapy. Having multiple organ distress is a prescription for opening Pandora's Box. My score is 2 so my chances of stroke is not statistically significant. Ablation disturbs the natural electric pathways irreparably. So I'm reticent to go down that path. Holistically that may prove contraindicative.

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You might like to start a new post with this avrambaer.

The trouble is, anticoagulation is such a double edged sword and it is all too possible to feel you are damned if you take it and damned if you don't. Being doomed either way does no good for one's sense of well being.

I'll leave it there!

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I don't feel, damned if I do and damned if I don't. What I want is the most effective way to benefit from the treatment with the fewest consequences. With my risk factors, it may be in my best interest to do nothing until I reach 75.

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I'm glad you don't feel damned either way, because it is a situation with no good way forward.

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The goal of anti-coagulents is admirable. Finding one without lethal consequences is the pot of gold at the end of the rainbow. Reducing the risk of stroke to zero eliminates the consequences of atrial fibrillation since it isn't by itself fatal.

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Anticoagulants don't actually reduce the stroke risk to zero do they?

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The NIH studies indicate that when properly administered anti-coagulents reduce the likelihood of strokes to less than one percent. That's as close to zero one can get. The fly in the ointment is that anti-coagulents carry the risk of bleeding incidents to 62 to 67 percent of those patients who take them and five to seven percent suffer hemorragic bleeding. I just saw a television ad by a law firm that specializes in suing for those harmed by Xarelto and Pradaxa. You know that there have to be a sizable number of victims if a law firm is willing to pay thousands to attract victims to institute litigation. That's my quandary in trying to select an anti-coagulent that won't harm me.

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Well, this was my problem when I first encountered anticoagulation. I tend not to conform and if there's a divide with a big majority I'm all too often in the little group. Rhesus negative (17%) or positive? I'm negative but group AB (3%) with it and AB- has an incidence of about 0.6%. It gives me no confidence! I was almost certain that anticoagulation would kill me (hence the feeling of being damned either way). Four years on and I'm fine.

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When you have PAF nobody knows when you will have the next episode of AF, is then when you need the anticoagulant effect of Eliquis to prevent a possible stroke. Due to uncertainty of knowing when the AF will return, it could happen while you are asleep. That is the reason why your doctor wanted to have you protected at all times with Eliquis.

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I have had 2 episodes of |A|F in 4 years. I have just been advised to take Riveroxiban (Excuse spelling if not correct) I have done lots of research and am afraid to take it as there is no antidote if you have a bleed. Like others I have been told to take it by one doctor and that I don't need to take it by another. Really confused.

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I take Pradaxa - because there is an antidote in case of uncontrolled bleeding. I was told (post ablation) that I no longer need it......I continue on it because the thought of a stroke concerns me much more than the possibility of a bleed. While the ablation (about a year ago) stopped my symptoms, yesterday I noticed heart rate change while resting.....a bit disappointing...

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