Goodbye flecanide my old friend! - Atrial Fibrillati...

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Goodbye flecanide my old friend!

dedeottie profile image
15 Replies

Well, the day I knew would eventually come, has arrived.

A year ago I had a routine stress test to check that flecanide was not causing any potentially dangerous rhythms. My previous years test results had been reported to me and they were fine. This time I didn’t get a report despite my best efforts to get them and believe me I did try. Anyway, yesterday was my annual appointment with the consultant. It was obvious that he was looking at the stress test results for the first time and alarmingly , he did find evidence of some possibly dangerous rhythms at high heart rates. So, I now have to come off flecanide and have tests to see if my arteries are ok as this could be one reason for flecanide suddenly causing problems. The consultant stressed that I had to stop taking flecanide immediately never mind thatI have been walking round for a year with the potential to drop down dead because he hadn’t looked at the results. I’m trying to keep calm about this .

Now I have been put on An initially low dose of sotalol which I am dubious about as

1. I think I will need to up the dose to keep AF at bay and I have a lowish heart rate and low blood pressure already .

2. I know this is not a recommended drug in uk but I’m not sure why.

Clearly if it is the least dangerous drug for me, I will have to take it but welcome anyone’s thoughts or experiences. I have tried doing a search but nothing specific came up.

Also, has flecanide been pro arrhythmic for any of you guys, without the presence of artery disease?

I have no symptoms of clogged arteries and weight Bp normal and low . Can’t make anymore lifestyle changes as I’m already living the enforced life of a saint.

Many thanks folks x

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dedeottie
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15 Replies
rosyG profile image
rosyG

Hi

I think flecanide can cause problems even without artery disease. Do seek second opinion re alternatives!!

dedeottie profile image
dedeottie in reply to rosyG

Thanks Rosie, I will. Hope you are well. X

rosyG profile image
rosyG in reply to dedeottie

Just checking- I’m sure you had a beta or channel blocker with flecanide ? Should have stopped the problem...

dedeottie profile image
dedeottie in reply to rosyG

I was on bisoprolol with the flecanide.

rosyG profile image
rosyG in reply to dedeottie

That rules that out then! There must be something else suitable???

CDreamer profile image
CDreamer

I can understand your concern. Mmmm.......have you tried polishing your halo?

Both Flec and Sotolol can cause as well as treat arrythmias, as can any anti-arrythmia drug but as we all react very differently it is really hard to predict. Sotolol was dropped in the UK as a recommended drug for Lone AF and no longer favoured by some EPs because in a couple of very rare incidents, it caused ventricular arrythmia which resulted in death. It is still used for other types of heart conditions associated with AF so I would suggest you need more detail of why the recommendation before being able to make a judgement.

I know of someone recently who has been told they could have a pacemaker - so that they could continue to take Flec to stop AF - seems strange to me but I can understand your caution and wanting more information. I know Flec can also cause narrow QT complex - one of the reasons I have PM because I showed some signs of narrow QT and I took Flec for about 4-5 years.

It’s a conundrum. Hope you find some answers

dedeottie profile image
dedeottie in reply to CDreamer

Thanks CDreamer. I was told I was being given sotolol because it was safer for me than the flecanide but as they can both cause dangerous arrythmias, it doesnt seem to make sense.

How are you these days? Did you have the second part of the pace and ablate? X

CDreamer profile image
CDreamer in reply to dedeottie

Hi recovering from PM LV lead review & replace 12 days ago - today I’m not good - see my post. The AV node ablate is on hold for the moment as generally I’m a lot better.

Between the devil & deep blue sea with anti arrythmia drugs.

I took one dose of Flecainide for PAF and developed flutter. I don’t have angina, but do have some narrowing of the coronary arteries.

I took Sotalol for 9 years without any apparent problems. I think it was widely prescribed until it became clear that it could (rarely) cause “corsade de pointes”. The key risk factor is prolongation of the QT interval on ECG.

emedicine.medscape.com/arti...

dedeottie profile image
dedeottie in reply to

Could I ask you what medication you are on now Oyster if not flecanide or sotalol? Thanks x

in reply to dedeottie

I should have explained that I have permanent flutter with 4:1 conduction at rest. This gives me a ventricular rate around 66.

Being permanent, I'm no longer on rhythm control, and I don't need rate control.

If I have sustained periods of 2:1 conduction with a rate of 130 after exercise, I take a small dose of Nebivolol.

So just taking apixaban as regular medication.

Propafenone is an alternative to Flecainide but presumably shares the same contraindications as Flecainide, or I imagine you would have been given that rather than Sotalol.

dedeottie profile image
dedeottie in reply to

Thank you. I think it is sotolol or think again time! As I understand from my arrythmia nurse Sotalol works by blocking something different to flecanide ,propafanone etc

I think Im just going to take a leap of faith and hope it works.

So far I have been taking it for 48 hours and flecanide must be more or less out of my system. I have had a few short runs of AF and quite a few short runs of fast heart rate ( 130) so not sure whats going on there. I am keeping a diary.

I hope you are feeling well . X

dedeottie profile image
dedeottie

Thanks for the info Oyster.

A few years ago my flecanide was reduced from 150mg x2 to 100mg x2 because there was some widening of QS complex again at higher heart rates. I would like to think that they had taken that into account but I dont have too much faith in this cardiology department anymore. X

sarniacherie profile image
sarniacherie

Sorry to hear about you. I had exactly the same when a 24 hour tape showed bisoprolol was reducing my night time heart rate to dangerous levels but it was 6 months later at my follow-up appointment that the cardiologist went a bit quiet on reading the results and told me to stop taking bisoprolol immediately. I was really annoyed too. This was pre-Covid so he had no excuses for not picking this up. The medics I have seen never get concerned about palpitations. All I ever get told is that it won't kill me. Well it damn well feels like it might at times. Sotalol is not usually recommended for women according to a cardiologist I saw many years ago. I would ask to see another doctor. Make a list of all your symptoms and questions and don't leave until you get some answers. Good luck.

dedeottie profile image
dedeottie

It is scary isn’t it. Things have moved on for me now as the sotalol has also stopped working and so now a pace and ablate procedure is all that is left. I am due to have the first part of this within the next month. X

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