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Anticoagulants

I do not want to take anticoagulants. The medical industry seems to be telling every women over the age of 65 that they must be on a anticoagulants if they have Afib. Please advise.

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The choice is yours.

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Hi Slatery, I guess it depends on your level of risk for stroke due to AFib. Some people can do a low dose aspirin while others like myself take Xaralto. Since I have controlled high blood pressure, heart disease prevalent in my family, I am at moderate to high risk for stroke due to AFib thus use Xaralto as a protection. In balancing the risks in taking it or not taking it, I determined through much research that the risks for not taking it were too high. I saw my father's journey through stroke and would never want to travel that road.

It comes down to doing your research, talking with a trusted health care provider, weigh the pros and cons, and then making your decision.

Good luck.

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I've been taking them for five years. I am 62 now I think it's the AF recommended for rather than age. Read about it and make an informed decision. For me I prefer them to a stroke.

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If you did not get it from the NHS would you be prepared to pay around £60 month for it?

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Probably yes

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Probably none of us wants to take anticoagulants, but . . . .

Experience is that AF strokes are amongst the worst with often serious disability or death.

Co-morbidities may also play a role in making an AF stroke more likely.

Our CHADS2VASC score gives an indication of the individual risk we each run of stroke and two of these risks are sex and age.

I am female and over 65 and I wouldn't dream of increasing my stroke risk by not taking anticoagulants.

We all have free will to decide for ourselves - against medical advice.

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That's cool, but at least brief your friends and family on recognising the symptoms of a stroke. Might save your life.... might not! Your call.

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I'm not medically trained therefore will not advise on medication. Since May 2014, I have been taking anticoagulants, first Warfarin, and for the past year, Apixaban. I am not aware of any problems with either, although it was sometimes a problem maintaining range with Warfarin, hence the change to Apixaban. Like most people, I hate taking any form of medication, but having had some experience of dealing with stroke victims, that IS an option that really scares the sh*t out of me!! Ironically, although having AF increases the risk, of stroke, at least you are aware you are at risk and have the opportunity to do something about it. So many people don't have a clue until it's too late!! You ought to discuss this with your doctor because there is a potential bleed risk, but at least you will be better placed to make a valued judgement. Just bear in mind how many millions of people are taking antcoagulants of one sort or another without difficulty.......hope this helps, and I wish you luck.

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I think it was yesterday that I said I think anticoagulation is a double edged sword. Yes, it is promoted in order to prevent strokes and goodness, I think a seriously debilitating stroke is a fate worse than death. My CHADs score is three and therefore I am quite at risk and therefore I do take an anticoagulant - Rivaroxaban. I'm happy enough about it now that I've turned 70 as the risk increases as I age. It really doesn't affect my life too much at all.

It was very different when anticoagulation was first suggested to me and I was 66 and knew less about AF and anticoagulation and the way it would affect me than I do now. In April 2013 my cardiologist told me I was to take Warfarin. He didn't sell it to me - I felt he was dictatorial - and I felt I didn't need it and certainly didn't want it. I prevaricated and the surgery contacted me and I continued to prevaricate and was spoken to by various GPs who were helpful but painted a very frightening picture. That stroke was oh so imminent. By July I gave in and then found out more about Warfarin and wrote to the practice to say I did not wish to take it.

It isn't easy to feel at ease when you fly in the face of medical opinion and then I had a little run of AF that made me feel even more fragile. I gave in and sank into the dark well of despondency from which escape is elusive, feeling picked on, older than my years, having to watch what I ate and when I ate it. Death by haemorrhage was even more imminent than the dreaded stroke and I was taking poison and it would turn out to have been a tragic mistake. Suffice it to say that Warfarin and I had a difficult relationship. Misery eventually turned into incandescence which was mine for a very long time. At good times I merely simmered.

But life went on without any problem! No stroke, no bleed, no drama, no sudden expiry. I had an ablation and in July 2014 I gave up flecainide. By the time I moved from Warfarin to Rivaroxaban in 2015 (and the sun came out again) I no longer felt so doomed.

Yes, I am not a normal person and have to carry a little card, but I don't find anticoagulation so frightening any more. I have become quite complacent and right now, l'm waking up thinking how lucky I am.

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Thank you for your post. I am 66 and have been advised to take anticoagulants from when I turned 65. I have chosen not to as only one documented AF episode self reverting after three hours four years ago unti last night! I have battled with anxiety panic for over fifteen years. Last night was scary with the kit of panic symtoms with probably AF as well. I must get a kardia. Today I am exhausted from it all and thinking it is time to look at anticoagulation. Total stress brought it on, whether it was a panic attack first or AF arrhythmias first it does not matter one begets the other. You have helped make a decision to make an appointment with my cardiologist.

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I'm glad about that! I was leaned on by everyone (except my other half who understood my mindset) to toe the line and do as the doctor ordered. It didn't feel right and I was moderately sure for some weeks that I would be dying within a very short space of time. In any case, life as I had known it was over. There was no peace of mind. It was stroke or bleed, both looming ominously and everything suddenly seemed full of danger. And all for what seemed like a trivial little wobble that happened only once in a while and had done so for many years.

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I read somewhere that individual's with anxiety afib is more common as a long time symptom. I had extreme anxiety for years before taking medication, effexor. I will never stop taking this.

I would never stop my eliquis either. I hope to never suffer a stroke. I haven't had any problems with eliquis.

Judy

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Hi Judy,

Thank you for your comments. I tried Prozac and was extemely ill on it. Also was on different benzodiazepines and became addicted no fault of mine. Decided then to not take medication for anxiety as also some medication was contraindicated for certain heart medications. At present on no medication and anxiety wise was doing fine with a few minor blips with breathing technique learnt from psychologist I went to. Two days after horrible panic probable AF night I am starting to feel normal again. I will see my cardiologist in near future for anticoagulant, see how I cope with any further anxiety before trying medication agsin, will look at effexor.

Cheers

Terrey

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I would worry about benzo's for the addiction too. Effexor in now generic. venlafaxene.

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I feel like you. Now have a Kardia it has been a real help. Still doing all the researching - there a lot of questions I can't find the answer too.

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When making up your mind bear in mind that the "medical industry" is made up of clinicians who see the strokes caused by AF and they know that AF strokes are much more debilitating than other strokes-we all worry about the risks of anti-coagulation but if you work our your risk of stroke (Chads vasc score- see AF website) and Hasbled score ( for bleeding risk while in anti-coagulation) it may help you to make an informed decision about the best thing to do.

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RosyG... you are correct about medical people witnessing strokes in people with A fib. My sister-in-law was one. She refused to take an anticoagulant and thought a baby aspirin was adequate. It wasn't. She had a debilitating stroke just outside the doors of the emergency room. Her close proximity to immediate medical assistance didn't help her. She is now confined to a nursing home bed and wheelchair. By the way, I myself take an anticoagulant and I know there is a risk of a bleed if I fell and hit my head but I am willing to take that risk.

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I'm sorry to hear about your sister=in=law and hope she makes improvement over time. I have discussed this with stroke consultants while helping re-design of AF pathways with our CCG (as patient rep) and they all say the same- AF strokes are much worse than other strokes.

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You can always stop anticoagulants but you can't undo a stroke. The choice is yours if you have a risk according to Chadvasc, Nobody can force you to take anticoagulants , all I would say is read and understand your risks rather than take action due to some preconceived prejudice.

As others have said it may not be the AF but the company it keeps. By the way aspirin is of no therapeutic use in stroke prevention in AF and was removed from the recommended list by NICE in 2014.

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I didn't want to take anticoagulants either, but when you read the studies, listen to the arguments etc if you have episodes of AF then logic says the probability (that is all it is) of having a stroke will decrease substantially if you are anti-coagulated.

I had 2 ablations and was AF free for 2+ years, I came off anti-coagulants about 6 months after no AF episodes with the agreement if not blessing of my EP. Then I had an AF episode, now past 65, I panicked because I wasn't on anti-coagulants but by the end of the next day I was!

As others have said - it is your choice - but make that choice after doing your own reasearch and not relying on the opinion of others.

There are plenty of studies and good research papers available on the web - and there have been a few people on this forum who have had strokes or TIA's who would rather they hadn't.

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I'd far rather risk a bleed from anticoagulants than have a stroke! I can't think of anything worse. As a nurse I have looked after many many stroke victims over the years, and I would rather die than have a really dense stroke. I actually experienced a TIA about a year before my AF was diagnosed and live in fear of full blown stroke. I now take Warfarin.

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I too a nurse albeit early retired due to health

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I have permanent AF. I do often have af symtoms that I am aware of but often it is there silently ticking away. I was diagnosed with AF in 214 at the age of 67, an had an array of drugs to take for it. I too disliked taking all these drugs not knowing what effect they would have on my body.

I had uptil this age 67, hardly ever visited my GP, odd minor ailments, in fact teased my hubby that I had got this far without any problems or drug taking, hubby had been on blood pressure and cholestrel tabs for a few years, I thought I was doing well for my age an intended to stay this way.

Them wham, taken in to hospitol with heart failure and tests also revealed AF. I am having afew battles with some of my AF medications with my medics (another story) but Rivaroxban has become my reluctant friend. I do not want to have a stroke, that terrifies me.

Think very crefully about your decision, why do you not want to take it. You make it sound that you feel the drug industry and medics are pushing NOACS just for profit.

cassie

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It is your body your choice but trust me I would rather take a pill a day than have a stroke and I have seen this first hand being left unable to speak unable to walk having to get someone to do everything for you and I mean everything even going to the toilet but it is your choice think hard xx

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I forgot to say I had a TIA a couple of months ago scared the living day lights out of me thank goodness no lasting effects would the outcome have been the same if I had not been taking anticoagulant I will never know but thank god I was

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I agree with all of the preceding 13 replies. And, I, myself, take Rivaroxaban because, like the rest, I am fearful of a stroke.

However, I am driven to have up-dated information of what the medical field is thinking. Therefore, the information, dated March 21, 2017, on this site gives a different angle:

cardiacrhythmnews.com/antic...

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Hi Cuore

a good link thank you- the article does acknowledge however that it was a small study ( 400 people and only approx half had stopped anti-coagulation after ablation) and that a much larger study would be needed. The conclusion that in individual cases it may be OK is, I think, what many clinicians also advise now- I wonder if this is because all the other factors which make up our strike risk are then properly taken into account, Takes us back to Chads vasc and hasbled scoring which can be very helpful in our decision making

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I can understand that coming from no anticoagulants and in particular Warfarin you would feel a high degree of reluctance. After all I for one knew Warfarin as rat poison.

I have been taking Warfarin for decades to me it is a necessary evil and just another tablet to take each day.

I have had no known side effects and have the comfort that it is assisting me to minimise the chances of stroke - a much greater fear.

Do your research and think hard on all that has been said in the replies above.

Pete

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Hi I haven't posted on this for a while. I had a stroke over 2 years ago and was only adviced to take aspirin. Lucky I recovered really well just occasionally mix up the odd word. When I had my stroke I was in hospital within the hour and given the drug which tries to disperse the clot fortunately for me it must have worked. I now take rivarovasban and will for life with no problems would never want to stop taking it with the fear of this happening again. I also had a ablation 18 months ago and so far so good.

Rob

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I am 69 and have been on Apixaban for 18 months with no ill effects. Having a very good friend who had a stroke and seeing the effects I would not hesitate to take anticoagulants. I take Apixaban and Sotalol for AF and doctor told me Apixaban was the most important to take.

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In any decision, I always ask "what's the down side?". I think the down side of not taking the pills is well set out here in replies. However, I feel your resistance might be something to do with feeling a decision has been made based on sex and age, which you believe writes you off before your time!

Rest assured that sex and age are relevant in assessing stroke risk for AF and modern anticoagulants seem to have little impact on everyday life for most.

.

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I have A.F. and no other problems with heart related health. When I was 55 i had 3 A.F. related T.I.A.s (mini strokes). I was not on anticoagulant s as I was otherwise healthy and under 65. I am female by the way. Believe me when I say that I couldnt get on anticoagulants quick enough after that!

I started on warfarin which had absolutely no ill effects but was a little restrictive as my I.N.R. wasnt very stable so I had to modify my diet a bit. Now I am on apixaban,again with no ill effects but no diet restrictions either. It gives me tremendous peace of mind.

My husband also has A.F. and he will opt to go on them at 65.

We all have to do what we are happy with but please make sure you have weighed up all the pro's and cons first.

Good luck with your decision making. It is not easy I know.

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I can really sympathise with you. I was diagnosed with AF just after I had turned 65.As I am female I was therefore given a Chadsvasc score of 2....Need for anticoagulation. When I thought about it, I found it difficult to absorb the fact that a few months ago I.e at the age of 64 anticoagulation would not have been recommended. I was sent home from hospital with bisoprolol and Rivaroxiban. When I researched Rivaroxiban I was horrified by the negative information particularly the ongoing lawsuits iin the USA...also I had blood in my urine. So I stopped taking it and did a lot of research on natural blood thinners . For 3 years I took Nattovena (nattokinase) fish oil, vitamin e, cinnamon every night in warm milk, turmeric and lots of garlic. However, towards the end of last year my episodes of AF began to increase and so did my anxiety that my reliance on the natural blood thinners was not based on any real scientific evidence and the fact that my dad had died from a stroke aged 69 in 1982...result of AF? ...who knows. Anyway I am now taking Apixaban. There are side effects..there is definitely more hair in my hairbrush each morning and I have had a nasty bloodshot eye for 4 days. However as I near the age of 70 I feel that the risk of a stroke is increasing with AF and age so I have had to bite the bullet. The choice is up to you but I have replied in order to give you my research on natural blood thinners and to let you know that I do feel a bit more confident now that I am taking an anticoagulant but am not happy about taking it...its a price I have to pay. Good luck on your Afib journey.

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I'm with you I don't take them and feel much better for it doctor said it was up to me as long as I realised that I may be at more risk to a stroke than average.

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When I got AF I didn't want to take anticoagulants. In fact I refused! That was in the days when my AF was controlled with flecainide. I had a period of 10years when with the help of the medication I was AF free. I was on holiday in 2013 when it returned. when I went to see the cardiologist the first thing he said to me was that I needed to take warfarin. I wasn't happy but the risks of not taking the warfarin were explained to me and I realised that it was better to be safe than sorry. Since I started on the tablets I had quite a few episodes of AF. I had 3 ablations in 2014 and since that time I have been AF free. I still take anticoagulants (apixaban) I am so pleased I took the warfarin as I am now very well and leading a normal life. Taking the Apixaban is no problem. No blood tests required. I must admit that when I was taking warfarin the constant blood tests and trying to keep the INR in the right range was a bit of a chore but I have to say it was worth the effort. My Cardiologist said if I ever needed another ablation his drug of choice would still be warfarin pre-op. I do hope this has helped you

Best wishes

Carole

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Neither do I but it's your body and your choice. Its all about risk factors, If you are not overweight, no diabetes, no family history of heart related issues etc i believe you would be considered low risk. But with AF there is always the increased risk of stroke which is why my cardiologist (also a friend) strongly advised me to start when I hit 65.

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Before I was diagnosed with AF, I had a TIA aged 57. It was pretty scary but I recovered quickly from the speech problems I had at the time and have been left with only minor right side facial numbness around my mouth. Since I was diagnosed with AF I have taken warfarin with no problems apart from being outside the recommended range an odd time which means more regular check ups for two or three weeks thereafter. After spending five days in a stroke ward with other patients much worse off that I was, I consider myself very lucky to have suffered "just" a TIA and would always recommend to anyone to take an anticoagulant given the chance.

Hope this helps and all the best

Margo

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I am not sure I understand why people are frightened of Warfarin.

1. To be sure, it is NOT the drug companies that are pushing people on to Warfarin. There is no money in Warfarin. Privately, you can buy it in tubs of 500 tablets and a a year or so supply costs 20-40 pounds. The only possible money is in those forced to pay for the strips if they self-test. I leave as an open question the money in other anticoagulants. At least for AF only, you have a choice.

2. The risk of not being able to control a bleed. Be clear: the risk of a bleed is the same, with or without Warfarin. The problems come if you have a bleed. Most can be controlled. Most are minor. The only area of serious risk is into the brain, so, be careful of banging your head. The bleeding risk into the brain is smaller than having clots in the wrong place.

3. The problems people have with dosing. These problems can be reduced if you accept that for some people, the natural biological variation is more than 2 INR. And, as has been said many times on this forum, the risk only starts getting serious above INR=5. I have a metallic heart valve so I have no choice. My range is set higher than for AF, and mine is 3-4.5 with 2.5 to 5.0 tolerated, no dose change needed. In AF, as long as the INR is higher than 2.0 you are protected. The rest is easy.

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Listen to the advice of your Cardiologist. You are 5 times more likely to have a serious stroke than someone without AF. Read as much info as you can from the AF Association Web Site. I take Riveroxiban without hesitation.

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Hi Slattery. I too have to take an anticoagulant. I am low level AF and medication seems to be working fine. I take xaralto and have no problems with it at all. I work with animals and am constantly getting scratched or bruised but am seeing no excessive bleeding issues at all. My heart was functioning at 65 percent while in AF but it seems to be ok now (I go back for another ECG in a few months. I'm in US so it's not free) but again I've had no problems with it at all. Just my two cents here. I like that the medication is working for me and I feel no effects from it anymore like tiredness,etc.. Best of luck to you.

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Hello Slattery, I think it also depends on if you have permanent Afib or paroxysmal afib. I think if I had the permanent kind, I'd want to be anti coagulated. My EP only gives me anti coagulants for 4 weeks after an episode. (I've only had two in the last 20 years). He says I have afib but I'm not IN afib so don't need to be anti coagulated all the time. I'm 62 and 1 on the chads score being female. Good luck with your decision. Trish

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You are lucky to be offered anticoagulants. When I was first diagnosed I had to fight to get it as despite 2 suspected TIAs my GP was dragging his feet. In the end I went to A&E when I was having a very fast episode and the doctor there prescribed it.

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I was reluctant to take an anti-coagulant when I turned 65, but every doctor at my practice whom I saw, said that I should be on one, although they were honest and said that they came with risks. Eventually I gave in and I started Rivaroxaban about 5 months ago, but I have since changed over to Apixaban. When my heart starts to skip beats I am glad I am taking it. But ultimately it your choice.

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The risk is double edged. Of course the bleeding caused complications are more than unpleasan, but this is the smaller risk. The good news is that there are always new better and better solutions. The Warfarin is replaced by new, less dangerous pills. The next step, still under evaluation is likely the intermittent antucoagulation thearapy, guided by ECG control:

Targeted Anticoagulation for Atrial Fibrillation Guided by Continuous Rhythm Assessment With an Insertable Cardiac Monitor: The Rhythm Evaluation for Anticoagulation With Continuous Monitoring (REACT.COM) Pilot Study

onlinelibrary.wiley.com/doi...

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I await further developments with interest.

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Thank you all for this information. After reading your personal experiences, I am now leaning towards taking an anticoagulants. My next question is what anticoagulant has the least amount of side effect? I don't want my hair to fall out!!

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Still got full head myself not noticed any difference I started on Warfarin but v unstable so now on Pradaxa

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It's a known side effect of Warfarin but (much to my surprise) did not affect me and I'm OK with Rivaroxaban too.

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I take Apixaban and have not experienced any noticeable side effects other than seeming to bruise a bit more readily than I did before. My hair's not dropping out; that would upset me too.

I think every medication has *potential* side effects, but just because some people are affected it doesn't mean that everyone will be. Unhelpfully, I rather think that the only way to know how you personally will be affected is to take the medication and see. There are always others to try if you don't get on with the one initially prescribed.

For me, taking an anticoagulant is a 'no-brainer'. I'm far more scared of a serious stroke than of side effects that may well not (and don't in reality) affect me personally.

All the best with making a decision that is right for you.

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I asked for Apixaban because it seees to have fewer side effects (I changed from Pradaxa). My doctors agreed and I have a full head of blond hair and absolutely no noticeable side effects but it is one of the newer NOACs so less is known about it than drugs such as Wafarin.

I have a heavy meds regime for another life altering neurological conditions and I was worried about interactions and doctors advised that this was least likely to cause interactions. I take immune suppressants, Pyridostigomine daily and anti viral meds regularly.

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Apixaban has been great for me. The only downside is that you have to take it twice a day. It is apparently gentle on the digestive system and certainly does not aggravate my already dodgy digestion. X

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I can understand why as I am in the same place right now , ime 44 and have just started them before my ablation procedure. However I don't want to have a stroke and hope that I benefit from the medication until my AFib has been ablated successfully. That might be the 1st or 2nd or maybe a 3rd ablation. On the chad score if your a 1 or above your eaven more at risk of a stroke but apparently being a woman is a 1 . I think you should look into the benifits and way them up with not taking them and see what you think ? I have also read that aspirin just is not enough to prevent a stroke in people with AFib ? I look at it like this ? If I was diabetic I would have to have medication so I will take my chances and hope for the best 👍🏼💗

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I would like to put some statistics/thoughts into the discussion.

The following info is provided through a document produced by the Stroke Association.

There are around 152,000 strokes a year in UK. (2010).

Some 50% are attributable to Hypertension.

Some 8% are due directly to AF. The document states that appropriate treatment, by anti coagulation, would reduce the incidence directly due to AF by around 3% of the total.

To me this says the 5% remaining would still have a stroke even when taking anti coagulation.

One of the elements that keeps cropping up is left atrial enlargement

Hypertension leads to left ventricle and left atrial enlargement.

Mitral valve stenosis can lead to left atrial enlargement. .

Left atrial enlargement increases the risk of AF.

AF itself is understood to cause left atrial enlargement.

Left atrial enlargement can then lead to heart failure.

Perhaps all of us that have AF should be in the position to know if our left atria is enlarged before we rush to have anti coagulation as AF on its own is quite a small %'age of the total strokes and anti coagulation would appear to be only partially successful in preventing AF related strokes.

Could it be left atrial enlargement we should be looking at and what active measures we should be making to avoid or mitigate the enlargement.

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Jumper. Could you give the link please to the above doc produced by the Stroke Association? The only info I can find on their site is in the article "AF and Strokes". This says that the risk of a stroke is 5 times greater for someone with AF. This statement is itself a bit meaningless because it takes no account of the CHADS score.

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Hi handybe2

Here is the link that took the info

.www.thepossibilities.co.uk/assets/downloads/stroke-statistics.pdf

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I am from Chico, CA and was on warfarin for about 6 months. Really hated how I felt on it. I did some reearch and since I've always leaned towards natural cures take the following instead. 1x1 = 1 once a day 2x1 = 2 of item once a day, 1x2 = 1 item 2 times a day.

Coenzyme Q10 100mg 1x1, (Natural) Vitamin E 400IU 2x1, Either 1 garlic clove whoel or Kyolic capsules (odorless) 1x2, Krill Oil capsule 2000mg 1x1, MOST IMPORTANT - 1x1 Natakinase 200FU. Natokinase has been clinically studied and prevents clots and dissolves existing clots

All of the above are natural blood thinners. I also take to control high blood pressure:

The garlic above helps lower bp.

L-Arginine 1000mg 1x1 - vaso dilator which lowers BP

Ginkgo Biloba 120mg 2x1 - vaso dilator which lowers BP ( particularly seems to help heart vessels)

1 other important item I take which helps strengthen the heart beat similar to digoxin is Hawthorne berry capsules 1000mg 1 x3-4x per day depending on how I feel.

Been 18 months off of the warfarin and I feel fine. I might add that they also had me on Liiopril, valsartan bp meds and digoxin, cardiziem too. The only one I take now is cardiziem 250mg 1x2 (sometimes 1x1). The combination seems to keep my ticker working and my bp has dropped considerably.

Stats on warfarin /digoxin/linisopril/cardiziem - mornings even were bad 170/100, pulse 95.

Stats now on cardiziem and above "cocktail" of vitamins in am at same time above - 140-145/85 pulse 68-76.

The natural method takes longer, but I feel it is better. I used to keep a pill in a pocket (metroplol) in case of emergency. Do not anymore. If I go on a long trip I do take a few just in case. I find that certain teas really help too. Organic Hibiscus Heart tea from vitacost.com I drink it in AM at work instead of coffee. I do still have 1 cup of coffee daily, but not everyday, but always after the tea,

Everyone's body chem. is different and you have to be in charge of your own body. Listen to it and you will find what works best for you.

Good luck

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well I have to say, I don' experience any side effects with my warfarin.solarjdp69, it might just be luck that you have not suffered a TIA or stroke to date. how would you even know what your INR is? Russian Roulette comes to mind !

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What I keep thinking about is that taking an anti coagulate will not give me 100% protection. Also there are risks in having heart and I believe many more. Anyone know what the risks of having a fatal accident are?

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I'd rather have a fatal accident than a severe stroke, and end up in PVS.

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