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anticoagulants-or not..

OldJane profile image
16 Replies

I have read a number of articles which I think say that the protocol for when to add to the CHaDs s score for prescribing anticoagulants with AF was based on patients who were very obviously symptomatic whereas many newer patients have fewer symptoms and discover AF through smart watches / other devices which pick up less symptomatic AF. That the stroke risk for the latter group is less and therefore the bleed risk becomes more important. Especially if the episodes are brief, less than several hours. Since my ablation in 2020, I have only had one episode over 1-3 hours.

I have always accepted the need for anticoagulation and been a bit dismissive of those that question it, who wants to risk a stroke?

BUT if I was not on Apixaban I could risk the odd NSAI painkillers / aspirin and as many of us are elderly with other ailments to manage that would be very helpful.

open.substack.com/pub/johnm...

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OldJane
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mjames1 profile image
mjames1

A lot of exciting research going on in this area. Besides the link you provided to Dr Madrola's Substack, there's the US REACT-AF trial trying to answer these types of questions.

And while some ep's, mine included, are starting to individual risk scoring based on afib type and burden, it should be noted that for now, the duration, frequency and type of afib are not part of the official risk score/evaluation guidelines either in the US or UK.

With that in mind, I think it would be ill advised for anyone to take themselves off anticoagulants/thinners by themselves, but if so motivated, definitely bring up the topic, including the new research, with your ep and come to a decision that works best for you.

Another thread just started today on the same topic, here:

healthunlocked.com/afassoci...

Jim

mav7 profile image
mav7 in reply tomjames1

Jim, if I recall correctly, awhile back you gave comments about Dr Mandrola, his background, achievements, perception (pro and con). May I suggest it would benefit all if you could tell us more about him in both threads. Thanks ! (if I am mistaken, pls disregard)

The REACT-AF trial hopefully will provide answers and direction. And will be accepted by all. Being forever the cynic, it relies on the Apple Watch (major contributor to the study) instead of a neutral medical device. I realize the FDA has approved the Apple Watch.

newsroom.heart.org/news/lea...

mjames1 profile image
mjames1 in reply tomav7

I probably said that Mandrola is a bit of an outlier and a contrarian. This can be good and bad. He also writes a lot in lay publications, such as Medscape, so he views aren't necessarily reviewed by his peers. I don't agree with everything he says, but it's nice to have an ep's voice that isn't in lockstep with every other ep and device manufacturer. But Mandrola aside, the studies and papers speak for themselves. He's just reporting them.

Apple Watch was picked because it's reliable for detecting afb, FDA approved and readily available to the public should the trial be successful. Yes, they could have picked a more sophisticated device or implant, however then the results would be hard to duplicate in the real world by doctors and patients afterwards. I think it was a good choice.

Jim

BobD profile image
BobDVolunteer

I would never want to make another person's mind up since this is a very personal choice but I will say two things.

It has been said that it is not the AF which creates the stroke risk but the company it keeps.

I have not knowingly had AF since 2008 after my third ablation, but knowing as I do that even successful ablation does not remove stroke risk, for now they will prise my warfarin from my dead hands. LOL 😁 (After they switch off my pacemaker of course.)

OldJane profile image
OldJane in reply toBobD

I agree but I am medically fit - blood pressure / BMI etc just orthopaedically challenged. I long for painkillers at times.

Af8b_futter profile image
Af8b_futter in reply toOldJane

Hi there, I was 38 2hen diagnosed with AF and not on Apixaban until at 43 when I had a stroke. I do believe patient choice should be involved not just the chad²vasc score alone. My stroke was caused by a clot not a bleed and stroke doesn't discriminate age unfortunately.

mjames1 profile image
mjames1 in reply toBobD

Bob: It has been said that it is not the AF which creates the stroke risk but the company it keeps.

--------------

Dr. Rod Passman, lead investigator on REACT-AF acknowledges that your statement above, may be true. However, he believes there is already enough evidence to the contrary to at least put this question to an evidence based trial. Time will tell if it's the company afib keeps, or specifics of the afib itself that causes a higher stroke risk. This question is the crux of the trial. Stay tuned...

Jim

Karendeena profile image
Karendeena in reply toBobD

Love it BobD, always puts the humour into the response, keeps me positive.Having seen what 4 strokes have done to my brother through undiagnosed afib, I wouldn't want to take myself off anticoagulants no matter what the AF burden. As you say, many people don't feel it and therefore don't know they have it. According to my EP they are often the unlucky ones whose first symptom is a stroke. My brother lost his left periferal vision and independence, he will never be the same again.

Peony4575 profile image
Peony4575

I hurt my back and after taking the second half dose of prescribed NSAID celecoxib had my first AF episode. Apparently in susceptible people it does something to the potassium channels in your heart and triggers AF. Most people are fine with it , I had no way of knowing I wouldn’t be. Personally I won’t be touching another NSAID even though I have knees that complain loudly quite a lot of the time . I am doing exercise to build up the muscles around my knees .

OldJane profile image
OldJane in reply toPeony4575

I tend to agree but from my non specialist research aspirin appears to work differently and less likely to trigger AF.

Peony4575 profile image
Peony4575 in reply toOldJane

From my clinical trial of one I self medicated with aspirin for years without any problems whatsoever

Finvola profile image
Finvola

Pain management is a challenge with anticoagulants, when paracetamol isn't enough. I would never again take NSAID's - they are proven to cause AF as well as the possibility of enhancing the effects of anticoagulants.

Have you considered an alternative pain killer which allows you to remain on your AC? Short term relief can be had from prescription-only Co-codamol ( 30/100 strength and 15/100 strength) and longer term relief from pain patches and/or steroid injections.

I hope you manage to find a regime which suits you and keeps you safe.

OldJane profile image
OldJane

use Co codamol sparingly as it makes me drugged and affects digestion. I have lots of advice but the bottom line is the poorly kept secret that pain relief for many conditions is poor! Thanks for helping though

FSsimmer profile image
FSsimmer

Hi, and hope you are keeping well, I can see your concerns here.

I developed Afib 3 years ago suddenly. No specific trigger, although I was a runner and its common in athletic types. I am also a retired Nursing Tutor, so I knew the score, and talking of that my CHAD was 2.

Now, I am virtually asymptomatic but was put on Edoxaban and Beta Blockers. I have since had an ablation which has not worked apart from putting me back in NSR for one week!, so my Afib is long term persistent. I am due a cardioversion next.. Anticoagulation is based mainly on CHAD, not necessarily upon symptoms, which can be variable. Some people as I said ( like myself ) hardly have any.

My own view is, symptoms or not, if the medics think you need to be on anticoagulation ( yes, I know the risks ) then you should happily take them. Its a known fact that approx one in 5 stroke cases is associated with Afib, and you really want to reduce that risk.

Unfortunately some people only find out they have Afib when in hospital being treated for a stroke. Afib is a stubborn arrhythmia although not a killer in itself it keeps company with some nasty 'medical' conditions!!...It also tends to be progressive.

With the proper treatment you can live a normal and healthy life, Whatever you folks do, do not self prescribe or remove yourself from prescribed medication thinking you know best...You are not Cardiologists or EP's and you are not trained

2219overtimego profile image
2219overtimego

I am still on blood thinner and half no a fib as my AV node was burned after 3 ablation and a convergent procedure I still was having afib. I now have congestive and kidney failure.

OldJane profile image
OldJane in reply to2219overtimego

That sounds very tough. My very best wishes to you

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