A question of choice?

[Sambaqui]

There are a number of expressions of concern in today’s posts about the efficacy and/or desirability of anti-coagulation in respect of AF, and it seems I am not the only one who wonders whether they are doing the right thing by signing up to medication for life.

It seems that the NHS has a one-system-fits-all approach that – being based on CHADS – has little flexibility. I appreciate Slattery for introducing the ATRIA system of scoring into the discussion, and to goldie11 for supplying the link. On the face of it, this would seem to be a more flexible and individual system than CHADS and I wonder that no cardiologist of GP I have seen has ever mentioned it.

Doodle68 cites an interesting list of statements from the Stroke Association in support of medication – the first of which is: “The risk of stroke increases five-fold for people with AF.” Is there, I wonder, an authoritative figure for the reduction of stroke risk that anti-coagulation can bring?

Another post – from Jans5 - says: “It should be remembered that anti-coagulation increases the risk of strokes due to bleeding in the brain which according to the stroke association are the worst kind of stroke and these types of strokes are in the increase in the UK.”

As goldie11 says: “The final choice is yours” though – as for many others – the choice did not seem like much of one when I made it. Even at a low CHADS score the clear message is that if you don’t take the tablets you’re very likely to have a stroke. And that would seem to be it… ?

[BobD Volunteer]

My understanding is that anticoagulation reduces stroke risk by between 60 and 70%. Chadsvasc as opposed to Chads is a better predictor but we accept that nothing is perfect. We know that work is under way on a more flexible and person dedicated predictor but this is a long way off as yet.

To my way of feeling the single most important fact is that we in UK are amongst the worst counties in Europe for having at risk patients on anticoagulation and that over 7000 strokes a year could be prevented if that were changed.

Remember that many people (including one or two new members) , only discovered that they had AF after a TIA or stroke.

I know where my choice lays.

[Sambaqui in reply to BobD]

Thanks Bob - it's good to get a figure for the reduced risk, and also that work is under way to get a more flexible and person dedicated predictor. I need to be patient.

[BobD Volunteer in reply to Sambaqui]

VERY!

[Hidden]

My understanding from a NICE meeting is that there isn't a risk figure year on year if you don't take an anticoagulant, as the evidence based studies have only been for one year. Secondly, is the figure of "...five fold..." true for a person with a good HDL/LDL ratio, good blood pressure and active lifestyle with AF, when compared with someone who is overweight, with poor health metrics who doesn't have AF?

My personal experience is: excellent health metrics, exercised induced AF that was not a problem and quickly returned to sinus, EP advice that I was low risk and should not take an anticoagulant. None of that prevented me from having a full stroke that has left me partially sighted. As I mentioned elsewhere, I recall the Consultant Neurologist hurrying the team during my stroke treatment by saying; " A million brain cells are dying every minute" in earshot of my wife. If I could go back, I would ignore the EP's advice and I would take an anticoagulant. A healthy lifestyle may not be prevention enough whether we are discussing strokes, heart issues, or cancer.

[Sambaqui in reply to Hidden]

Thank you John-Boy - I'm sorry you have had such a terrible experience. You bring home powerfully the unpredictable aspect of the risk that AF brings. I hope you continue well.

[Hidden in reply to Sambaqui]

Thank you. My life is pretty good despite the past and, I've had excellent support from my Consultant Neurologist. There are many people who are much worse, including a younger ex-work colleague who has a terminal illness. The thing is not to dwell on the negative aspects but to get out there and enjoy what we have. I've mentioned before my lovely ex-yoga teacher who would say if you couldn't manage a yoga pose; "Don't worry you have hundreds of lifetimes to practise it". Then again, if I listen to Professor Brian Cox talking about Quantum Physics, there's probably at least one of me out there in a different dimension (scary thought). Given that, we shall all probably be posting to a related forum at some point in the future. Until then, I wish us all well.

John

[dedeottie in reply to Hidden]

Oooo spooky thoughts !

[CDreamer in reply to Hidden]

Oh very well put!

Sorry you had that experience. I went off A/Cs after successful ablation but my first thought when AF returned was - panic - I'm not taking anti-coagulants. Something I never ever thought I would.

You can stop taking a drug, you can't undo a stroke.

Love it. xx.

[GrannyE in reply to Hidden]

I was told that I should take anticoagulants for life after my ablation. I am sorry that you had that dreadful experience but you have a jolly good attitude. You are quite right There are many worse off and we are lucky. Have tried listening to Brian Cox re quantum physics and I still cannot get my head round it. That there is a different me out there, albeit in a different dimension or even a different universe, not writing this is too odd with all the ramifications that implies. It is an exciting time to be alive with knowledge being expanded so fast and all sorts of theories being propounded. Stephen Hawking showed us that you can live a very useful life even though the body is failing.

[Slattery]

We don't really know what causes Afib, new research is being done that hopefully will help us individually choose the best direction for treating Afib. My choice is to live an active and healthy lifestyle, not take anticoagulants at this time and enjoy each day to its fullest!!

[KathFrances in reply to Slattery]

Hi Slattery, would welcome a reply to my PMs to you!

[Slattery in reply to KathFrances]

KathFrances,

I do not see your PM on this blog?

[KathFrances in reply to Slattery]

I sent you 2 PMs about a month ago and have asked a couple of times since then whether you would reply. Are they not in your messages folder?

[Bagrat]

I find this YouTube video by Dr Sanjay Gupta a very helpful explanation of life the universe and everything.

youtu.be/-M2vA4nxzT8(Not working as expected?)

[Sambaqui]

Thanks all for your different and personal perspectives on this topic. They are much appreciated. I hope that further research can result in a finer and more individual assessment of the role of anti-coagulation in AF.

[Hidden]

Post ablation 2 with 3 AF events since I have been taken off Apixaban based on 1/100 chances of stroke compared with 1/100 chances of bleed. I am 63 and quite unfit and unwell generally. The responses on this forum are clearly a majority for taking anti-coagulation. As it happens I feel better off it or less legless and less likely to drop in the street when out walking so I am going with the flow of my consultants advise not to take it. My health is so poor I can do very little and life is quite limiting so all I have left is 'hope' and that includes the hope of course that despite all the advise here I hope I won't get a stroke and that my consultant didn't get it wrong. He and I for sure are doing are best to get it right and neither of us has the power to know the definitive answer or the power of hindsight.

[Rellim296 in reply to Hidden]

It's great when you are in tune with your doctor and can go, with his blessing, with what feels best to you.

My GP told me I was not his average AF patient and didn't mention anticoagulation when I turned 65. A year later he advised me to live life without letting AF get in my way. We saw eye to eye and I was happy, but he had time off and when I saw a locum he referred me to a cardiologist who told me I was going onto Warfarin. There was no choice nor any invitation to discuss it. The GPs at the surgery chased me and they did give me a choice - Warfarin or a very swift and devastating stroke.

It's impossible to feel at ease when you take a stand and refuse to follow medical advice and in the end I opted for Warfarin (a NOAC was not on offer) because sudden death from a haemorrhage seemed by far the better fate. I felt moribund, whooshed forward about twenty years, with my life suddenly full of pills, trips to the surgery for blood tests and no cranberry topped pork pies. I disliked having been taken away from normality, with a horrid little yellow book, a card to carry and a bracelet to wear.

The thing is, it was all so monumentally awful that it's made me quite euphoric now I'm older, on Rivaroxaban, and haven't had a stroke, nor a bleed.

[Bagrat in reply to Rellim296]

Recently had to stop supplements and warfarin pre GA. I know supplements are my choice but left with only one tiny pill twice a day I felt liberated. I know it's totally irrational and I'm grateful I can reduce risk by taking meds but those 5 days were great!!

[Redhead1949 in reply to Bagrat]

Bagrat, was the GA surgery? So you stopped the supplements and warfarin for just 5 days? Would you mind me asking what supplements you take. I used to take supplements, as I never liked taking 'pills'. But today, all that has changed having A-Fib. I used to take Vit.C-1000mg, garlic tablets-200mg., Oregano Oil and Tabs 3 times a day. Now they don't want me to take any! I am going to ask my GP if I can take Magnesium as I have heard lots of good things about it. Wishing you the best!

[Bagrat in reply to Redhead1949]

Thankyou. Yes it was breast surgery.They like you to stop all supplements a week before GA. I stopped warfarin last dose the friday before surgery last Thursday. Surgeon didnt want me to restart warfarin till Saturday ( last time I had an op I restarted same day). use magnesium spray at present and since talking to Dr Gupta I intend to move onto Magnesium taurate though warfarin nurses at surgery not happy. Also take multivitamin plus probiotics and omega 3. Vary between cholesterol lowering plant sterol drinks and plant sterol tabs. Finding a doctor who supports the use of supplements is as rare as hens teeth. There is lots of evidence that we are short of magnesium, soil depletion etc not helping.

Best wishes Wendy b

[Redhead1949 in reply to Bagrat]

Thanks for getting back to me Wendy. I pray everything went well with your surgery. Yes, I have started reading a lot about magnesium. Just found all the YouTube videos by Dr. Sanjay Gupta yesterday! I have a lot of viewing to do to get caught up! I mentioned taking magnesium to my visiting nurse today, and she said a lot of people take magnesium. I then said, "but it's a blood thinner". She didn't seem concerned. She said she didn't think taking it would make that much difference, but to talk with my doctor, which I'm planning on doing. The plant sterol drinks and tablets, are they for cholesterol? Yes, doctor's don't like us taking supplements. Big Pharma can't make any money if we stop buying their pills. Do you or did you have any problems with the warfarin? I hope I'm not bothering you with my questions. It's just so nice to talk with someone who has the same problems, and takes supplements. Write when you can. Hugs, Bonnie

[Bagrat in reply to Redhead1949]

No probs with warfarin at all. I like my greens and try to eat the same amount over a week. My theory is if you are eating a reasonable amount of vit k rich foods you dont need to worry too much about food with average vit k. I eat nuts every day for magnesium too although cashews have more vit k than most ( my favourite!) Our GP surgery uses the fingerprick coaguchek machine for INR and its 15 mins walk away . I can request a check anyime. Yes plant sterols for ? Lowering cholesterol. I was asked to start statins ( borderline for treatment) but didn't as I'm not sure I believe all the hype as a preventative. There's lots of conflicting research especially for women . Enjoy youtube! Wendyb

Reply Like (0)

[Redhead1949 in reply to Bagrat]

How fortunate you're coaguchek is so close to you! I have a nurse come in once a week who does mine. But shortly, they are going to discharge me and I will have to go to my doctor's every week or two to get checked. Thank goodness it is only a 15 minute drive. I thank you for your information, as it is giving me courage to try a few things and not be so afraid of everything I eat or take. I will keep you updated as to how I make out. Talk to you soon. Bonnie

[Bagrat]

Redhead1949 message me if I can be of support. Between blips my INR checks are every 10 weeks now!

[opal11uk]

I had PAF for approx. 2 years, my cardio advising against anticoags because she felt I was too young at 54 to go through all the bother that Warfarin brings and then I had a stroke, caused by PAF, which landed me in hospital for two weeks, I had been taking 375 mg soluble Aspirin daily up until then and feel that it saved me from a more severe debilitating stroke however then I was put on Warfarin and I wonder if I had been prescribed prior to the stroke whether or not I would actually have had the stroke lol

[Sambaqui]

To coagulate or not is clearly an important - and possibly life-giving - choice. I'm glad you survived and hope you are well and recovered today.

[bayonnejoe1]

My experience was I had a low CHADS score, opted for aspirin, had a stroke, lost my peripheral vision. Treated at John's Hopkins for stroke. Was told owing to the size of most heart formed clot I was Super Lucky I wasn't dead (20%), severely disabled (40 to 50%). I'm on Apixapan now. It's all numbers to me now, I'm 2x higher risk of stroke, and I have, as best as I can tell, a yearly 3% chance of "a serious bleeding incident". The only alternative is the heart chamber implant, and that comes with its own numbers. Ughhhh . . .