Awareness of AF medication and anticoagulants

When I was hospitalised in 2014 with pulmonary toxicity / cryptogenic organising pnuemonia from prescribed Dronedarone, I was surprised that the young doctors had not heard of Dronedarone. I'm now one of the "mystery patients" that trainee doctors have to diagnose in the local health centre: in my case this is a stroke linked to AF despite a very healthy lifestyle. This week the GP leading the session said that he'd never heard of Dronedarone. I think that we have a lot to do in the AF community. As part of spreading the message I'm aware of a two minute video to be released to clinicians in the UK and USA about taking an anticoagulant when you have AF, even though you have a healthy lifestyle.

[10gingercats]

I also lead a healthy life style , amd am a 5.3.woman weighing less than 9 stone...and ...had have had an almost veg. diet for many years....actually total veg.for about 15 years.There was a question mark over whether I have/had AF when I had a TIA.During the investigations I was found to have a hole in the heart.This was closed in a simple op. and I immediately (within 24 hours )felt much better and energetic.Afib was confirmed and I take Apixaban but I have symptoms only on rare occasions.It does make you wonder about the circumstances that can lead to Afib and stroke and all the hidden possibilties.

[julesp]

I was prescribed Dronedarone last year and the nurse in the hospital said that in her 13 year working there I was the only patient it had been prescribed for.

[BobD Volunteer]

I tried to leave a post earlier but it never arrived so here goes again. Back along when Dronedarone (Multaq) was first approved in UK I did several radio interviews and also a short film about AF for the makers Sanofi Aventis. It was hoped to be a great help in the treatment of AF and as a result lots of people demanded to be put on it. Unfortunately this lead to some unsuitable patients being prescribed the drug leading to some unfortunate side effects. Regular blood tests were not always followed and a few people became ill as a result.

Since then it seems to have been little used and fallen out of favour although a few people do have great results with it. Again it is about selecting suitable patients as it isn't a drug which suits everybody.

[Hidden in reply to BobD]

Hi Bob;

I had run and cycled for many years so I had a day time resting heart rate between 45 and 48 and, during sleep it would drop to the mid-20s and even pause for around 2.5 seconds. Additionally I was and still am a bleed risk from an haemangioma on my tongue. I did a prolonged Bruce protocol test because of my cardio fitness and the EP and Nurse Practioner decided on Dronedarone for me. Unfortunately I was one of the 0.06% that developed pulmonary toxicity (a mass in the right lung) and whilst in hospital I was given Amiodarone that created a mass in the left lung. I'm only here because Professor Millar of the North Bristol Lung Centre (NBLC) recognised that it was not pneumonia, I had wonderful care in the NBLC and, my cardiorespiratory fitness kept me in this world. I was told later that I had been close to death.

[BobD Volunteer]

I don't understand why life style has any bearing on anticoagulation. The need is about risk factors not diet or how fit you are or how much alcohol you consume.

[Mike11 in reply to BobD]

I think that was the point of the video he mentioned - people think that with a healthy lifestyle you can somehow avoid anticoagulation without risk.

[Hidden]

We are told that a healthy lifestyle is the answer to many ills, maybe because it is self-evident that a lot of people have an unhealthy attitude to their body. A healthy lifestyle is important but we need to recognise that it is not enough and that other factors need to be taken into account. I know a female runner who ate vegetables from her organic allotment, yet she contracted breast cancer. My total cholesterol never exceeded 3.8 total with a good ratio of HDL, I had a long history of cardio exercise (my metabolic age was 15 years less than my true age), I was 70kgs and 5 feet 10 and one EP scored my CHADVASC at 1 when I was 68 and expressly said that I should not take an anticoagulant because of my bleed risk. Yet I had stroke. None of us are bullet-proof but if a stroke or heart attack happens, fitness and mental resilience will give you a better chance of survival and recovery, provided that the need for the right care is recognised. Because I didn't have the FAST symptoms when I had a stroke, the ambulance crew talked to me for an hour before they realised that my responses where getting slower, and then it became a blue light run to A&E.

[BobD Volunteer]

I totally agree about mental attitude which to my mind is the real factor in recovery from any condition. Maybe I'm too stupid to understand that I should have died earlier this year. My doctor said how traumatic it must have been but I pointed out that I wasn't there at the time and it was somebody else's OH SHIT moment. Once I was awake again it never occurred to me that I wouldn't recover even seeing my BP was 60/30! It was just another battle to win as far as I was concerned.

[Hidden]

It's that make or break point. I remember the Consultant saying at 1:15 a.m. that he wanted permission to ring my wife as they were going to sedate me and put me in Intensive Care. I had read that with pulmonary toxicity that I had 50% chance of survival if they sedated me. I also knew that my wife would panic and there was a high risk that she would have an accident driving to hospital. The night nurse and then the Intensive Care Sister were wonderful and tried to persuade me to agree to be sedated but they didn't succeed. It wasn't that I was afraid of death, my body knew that I could survive and I wanted to take responsibility for any decisions.

[Alemo27]

John, are you suggesting,that anticoagulant can lead to stroke, or I have understood it wrong.

[Hidden]

That is an incorrect understanding. In 2014 I had been close to death from a rare reaction - pulmonary toxicity - to Dronedaone and Amiodarone that are rate control medication for AF. I was not taking an anticoagulant at that time, and could not take a beta blocker due to bradycardia from cardio exercise. In November 2014 an EP recommended that I should not take an anticoagulant as the haemangioma on my tongue was already a bleed risk and, for my age group I did a high level of cardio exercise. I could easily sustain a heart rate of 200 bpm during exercise. In July 2016 I had a stroke whilst I wasn't exercising or doing anything strenuous. It was after the stroke that I was prescribed an anticoagulant. I had a bleed whilst on Apixaban, Rivaroxaban was contra-indicated because of the pulmonary toxicity, so that left Pradaxa. You may know that Pradaxa has a reversing agent Praxbind. That suits me fine as I'm a member of a volunteer group that work in a nature reserve in Bristol. When I'm clearing scrub in the reserve I use a razor-sharp bill hook and a bow saw with a rip blade. If I did sustain a severe bleed there is a chance that Praxbind administered in hospital could save me from bleeding to death. Hence I always wear a wrist band carrying the words anticoagulant and Predaxa medicated.

[ILowe in reply to Hidden]

You say you routinely use razor-sharp tools. Then you should be aware of the newer first aid material such as seaweed (alginate) dressings, and Celox powder, and some of the newer bandages etc. Celox is quick, easy to administer, and has the great advantage that it does NOT need removing later. I carry the Celox and Alginate dressings and keep the bandages in the car etc.

[Mike11 in reply to ILowe]

Same here ! I have a couple in each jacket and a whole pack in the car. My own particular 'foible' is accidently biting my tongue which simply won't stop bleeding without these dressings.

[ILowe in reply to Mike11]

This really ought to be wider known. There is also a huuuge market here. Some enterprising company should put together a small kit + clear instructions and sell it at discount prices.

[Mike11 in reply to ILowe]

Savlon do a home kit with small ones, but basically they are expensive as the Israeli Army or one of its associated still has a patent on them

[Hidden in reply to ILowe]

General cuts don't bother me, it's more the risk of a severed finger(s) that either of my tools could do with ease, although I wear Kevlar sleeves and gloves that are a mixture of Kevlar and fine stainless steel wire. Since taking Pradaxa I note that carrying a 20kg kettlebell leaves a purple bruise on at least one finger, but it clears during the day.

[cuore in reply to Hidden]

Hats off to your survival skills, John-Boy. My research places Dronedarone and Amiodarone as rhythm control drugs for AF.

[jennydog in reply to Hidden]

I also take Pradaxa. Have you ever checked whether or not your local hospital has some Praxbind available?

[Hidden in reply to jennydog]

That's a really good point as I have presumed that they would. Having waited hours for the computerised pharmacy to dispense run of the mill medication I might be in for an unpleasant surprise.

[Mike11]

Don't worry - even some cardiac consultants haven't always heard of it ! Before my ablation I attended A&E once when my heart went crazy and was transferred to the heart centre where after excessive quantities of nebivolol we got it under control. Saw the consultant in the morning and after I told him aminodarone crashed me he said that was all he had so I had to tell him "what about trying dronedarone". He googled it and then phoned the pharmacy to see if they had any and they phoned back my nurse 30 minutes later saying they had only one packet that was just inside its expiry date so I said I'd take it.

Unfortunately it didn't work for me either so had the ablation three weeks later.

[Hidden]

Currently, I don't take any form of rate control medication as one way or another I'd probably end up "brown bread": my sleeping pulse is mid-20s and it can pause briefly so I can't take beta blockers either. I haven't had an ablation as amongst other things, the Consultant who carries out the procedure said that he wouldn't have it done himself! Whilst I am getting used to the gym again I limit myself to 30 to 40 minutes in the gym and a weekly 60 minute intermediate Pilates class. That does mean that the rowing machine and static bike still raise my heart rate towards 200 bpm. Unlike Andrew Marr I didn't have a stroke whilst exercising. I recall that Andrew had a stroke when was trying to row 10k in 20 minutes on a Concept 2 rowing machine. Before the stroke my short session was to row 10k in 22 minutes at full resistance on a Concept 2, followed by 4 x 5 minute sessions on a Marpo rope machine.