Anticoagulation

[Visigoth]

Not sure if anyone else has posted this -apologies if so - but it’s an interesting article:

independent.co.uk/news/heal...

[BobD Volunteer]

It has always been my view that many doctors are reluctant to prescribe anticoagulants in AF and UK has always been behind the curve in this respect.

[Bagrat in reply to BobD]

Over 10 years ago, although suggested by cardiologist, my then GP told me dire tales of brain bleeds etc in what seemed like an attempt to put me off. I was not deterred!!

[Fblue in reply to Bagrat]

They are both true.

[Omniscient1]

Mind blowing,thank you for posting. With the recent flagging of heart failure as being a higher risk than stroke for AF this is not a good look.My first reading of the source paper is that the study looked at patients scoring 2 or more on chads2vasc so people scoring 1 were taken out of the numbers, but this is wrong, they removed these people , so it concerns people not yet on ACs. The implication is that ACs will reduce this risk back down to normal.

[Shopgal67]

I had a letter recently inviting me to take part in that study , they were looking for a younger cohort and at 56 I fitted the profile.

After much consideration I decided against it , mostly because of my concerns about a spontaneous bleed on the brain and the fact that I am classed as 1 for stroke risk .

I am talking to an EP today and this is one of my main questions for her .

[joolzj in reply to Shopgal67]

I was chadsvasc 1 and very healthy and had a stroke 3 months ago from my lone paroxysmal AF. Please please take the blood thinner. I had been to doctors several times pleading to be put on an AC but they said my S (can hardly bring myself to write the word as I am still in shock) risk was too low and I was too healthy. I have no consequences physically or cognitively from the event, but it has affected my life profoundly emotionally. I am not the same person and everything I thought about where I was at in life was thrown into turmoil and fear and insecurity. I have never been anxious but now am in therapy to try to help me regain a sense of self and confidence. The fear of it happening again overwhelms me even though I have finally been put on an anti-coagulant, the anti-arrhythmic Flecainide, and a statin (automatically get put on high dose after a s even if not bad cholesterol). Have ongoing side effects but I will put up with them until my statin dose is reduced and will see if that helps (not sure which medication is the cause of the side effects or if it is a combination). Please don't think you're safe because of the low score... My doctor said after what happened to me and I was basically suffering PTSD (still am) after I was refused an AC, "This is the sort of thing that makes us rethink our protocol."

[ozziebob in reply to joolzj]

I didn't have an S, but an Scbsh🤔(spontaneous(ie. unexplained) chronic bilateral subdural haematomas), so I share your natural concerns about negative outcomes both off and on anticoagulants. In my case, with a cha2ds2-vasc score of 2 for age, my concerns re a repeat brain bleed while living alone, and becoming incapacitated before being able to call for help, have led to my current decision to refuse apixaban. There is no "right" decision.

[Fblue in reply to ozziebob]

That is my biggest fear. I hope you’re doing OK now. How did you know you were having that? I find it so upsetting that if you go off, the drug itself can cause a stroke or a heart attack or blood clot, which is what the blackbox warning is. Many doctors don’t even understand that warning. I think the drug company does that on purpose stating don’t stop suddenly, but they don’t explain that it’s the drug itself not your condition that can cause these things in the first month when you stop . I hope you’re doing OK now.

[ozziebob in reply to Fblue]

I have never ever taken apixaban, so I've never "stopped" it. The haematomas occurred several years before my AF started and the option of apixaban arose.

As for symptoms, I started getting intermittent spells of left hand paralysis, only for 5 mins at a time, but 3 or so times over a week, before I could no longer ignore it (as I initially did) and went to my local Surgery for advice, then on my bicycle with a letter to A&E. Fortunately, the bleeding had stopped by the time of my diagnosis 5-6 hours later. This meant I could be treated conservatively with a 10 day course of steroids (dexamethasone), with no symptoms since. However, I will always remember my shock at seeing, on the much clearer second CTI scan, the extensive areas of blood deeply pooled across both hemispheres of my brain. And this was after the steroid treatment was completed and had started to resolve some of the blood and inflammation. It was shockingly much more extensive and deeper than I ever imagined, and truly frightening. So, my concerns on later being offered apixaban for my AF, is that if I had another such bleed while anticoagulated, it would bleed for longer, and with my living alone, it might become catastrophic before I was able to call for help, and I don't want that. But I do keep reviewing my decision as I attempt to consider the latest research re stroke and bleed risks.

bob

[Fblue in reply to ozziebob]

Thanks for clarifying. I thought it was from the Apixaban. Feel well.

[Shopgal67 in reply to joolzj]

I 💯get where you are coming from , I’m so sorry to hear about your stroke and the mental implications that it has left you with

I have received CBT for heart health anxiety because of my misdiagnosis, it can be deliberating on a daily basis .

Having PAF has changed me as a person, i thought I was bullet proof , never really suffered from anxiety but all that changed 4 years ago and most times it’s all I can think about.

The decisions we have to make are life changing and no one understands until you have to make these yourself.

Wishing you well on your journey ❤️

[OldGrit]

I joined the DaRe2THINK trial a couple of years ago …

[108cat]

Interesting and thank you for posting, I hadn't realised the dementia connection ..

Yes in my case the 'reluctant' GP put almost no energy into diagnosing my 'palpitations' other than suggesting counselling and medication for 'anxiety'(!) After 8 months I insisted on a private referral to cardiology who 'prescribed' Kardia and then quickly diagnosed paroxysmal AF and put me on ACs.

Looking back that was 8 months of high risk .. and not everyone can afford to go private.

There seem to be varying theories about how fast a clot can form in the heart when in AF - from 5 mins to 5 hours ..?

[Thomas45]

I think the article would be more useful if the journalist had bothered to learn about AF first.

[RoyMacDonald]

Apixaban only delays clotting for about 20 mins, according to the information I've read. I didn't take the Apixaban the GP and Consultant recommended when I self diagnosed the AF, because of my fear of a bleed because my Father died of a bleed. I don't think he was on Apixaban. He did have Angina for many years.

18 months after my diagnosis I had a major stroke. I always take my Apixaban religiously now.

All the best.

Roy