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PAF and Flecainide

Deskford profile image
25 Replies

Hi, I was diagnosed with PAF in May of this year by my GP and was given a prescription for Bisoprolol at a low dose, this helped reduce my episodes of PAF but when my dose was increased I had bad side effects of severe chest pains, fatigue and poor sleep patterns, so my dose was reduced back to the ‘starter’ one.

Privately I saw a cardiologist in the autumn and after a full battery of tests, he prescribed Flexcainide at 2x 50mg, 2x 5mg Apixaban and 1X 12.5mg of Atenolol per day. The new drug treatment started in mid November. Whilst the side effects have been ‘liveable’ with - mild chest tightening, occasional vision blurring and dizziness the Flecainide appears to have made little or no difference to my PAF, I’m lucky if I can go 2 days without my smart watch telling me I’m in AF and episodes can last 24 hours or more. Plus I get a high heart BPM reading going in and out of AF. BP and heart BPM out of AF are absolutely fine.

My question is am I right in assuming Flecainide is probably not the the drug for me and as Bisoprolol wasn’t effective either, any suggestions as to what drug regime might actually control the AF or am I going to have to wait for an ablation to make any progress.

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Deskford
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25 Replies
wilsond profile image
wilsond

HiI'd contact your Consultants Secretary and ask for an urgent review. 50 mg x twice a day is quite low tbh.

Xx

Deskford profile image
Deskford in reply towilsond

Thank you for your reply, I very much agree with your observation! Have emailed my consultant for a review asap.

secondtry profile image
secondtry

I understand it is commonly accepted that Bisoprolol is to control heart rate and Flecainide to control heat rhythm ie AF. I am not familiar with Atenolol.

The dose of Flecainide you were prescribed is the 'entry level' and probably quite common as medics proceed cautiously just in case of an adverse reaction.

I was the same and after a month of 2 episodes a week, I was offered an ablation but requested instead that my Flecainide dose be increased to a 'medium dose' of 100mgs x2 daily, which stopped it for 10 years. I should add I wasn't given any other drugs eg the usual accompanying Beta Blocker as my cardio said it would make me 'feel unwell'; not sure why maybe because I have lowish BP and HR.... the medics don't like to get into discussions! I also made many lifestyle improvements over the 10 year period which no doubt helped keep my Lone PAF at bay eg reduce sugar and gluten by 80%+.

Might be worth discussing with your private cardiologist.

50568789 profile image
50568789 in reply tosecondtry

I am on Atenolol as an alternative betablocker to Bisopropol, which gave me diarrhea. Dose of 100mg per day has been reduced to 50mg six months after ablation, alongside anticoagulant. No Flec. All holding up well so far.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply tosecondtry

Hi

Um. BBs two did not lower my heart rate to controllable limits under 100.

! was 186!

Other 156!

First 1 year 5 months and the other 9 months. What a awful time recovering Stroke and Thyroid Cancer.

In enters CCB Diltiazem.

1/2 dose reduced to 51. I was still taking Bisoprolol so this was reduced to 2.5mg and separated.

BBs for me were better at controlling my BP especially Systolic.

Remember your statement wouldn't be right for Rapid H.R AF. Research says trial both BB and CCB to begin with. This would have helped me from the start of my journey.

cherio JOY. 75. (NZ)

Deskford profile image
Deskford in reply tosecondtry

Yes, I think I need to increase my dose of Flecainide! Have emailed my consultant for an urgent review. Thanks for your contribution, appreciated.

Vonnegut profile image
Vonnegut

Poor you! How different we all are! Hopefully, doctors will eventually realise that and treat us individually. The lowest dose of Bisoprolol proved too much for me to take daily, after only three days, but Flecainide works fine. Hopefully, the new year will bring something that works for you.

Deskford profile image
Deskford in reply toVonnegut

Thanks for your contribution- have asked for a review with my consultant with a view to increasing my Flecainide dose. Here’s hoping.

Vonnegut profile image
Vonnegut in reply toDeskford

I have reduced the first dose of the day to 50mg and then take the 100mg at night and it works very well. Hope it will work for you too.

Deskford profile image
Deskford in reply toVonnegut

Thanks for that, I’ll bear it mind for my review. Appreciated.

Abbyroza profile image
Abbyroza

Flecainide can promote AF in some cases. Especially if yours is vagally mediated. In that case Disopyramide could be more suited.

Deskford profile image
Deskford in reply toAbbyroza

Yes, I’ve read that too, have asked my consultant for an urgent review. Maybe I need to try a higher dose of Flecainide but it might be the case that it doesn’t agree with me and I need to try another drug. Definitely needs to be part of the discussion. Thanks for your contribution.

Abbyroza profile image
Abbyroza in reply toDeskford

If you try a higher dose, have your QTc value checked. Flecainide has a tendency to increase that value, and above 450 there is an increased risk for developing a dangerous arrhythmia called ‘torsades de pointe’. For some time, I took 350 mg/day and my QTc rose to 520!

Deskford profile image
Deskford in reply toAbbyroza

Thanks for that, good to know. I need to proceed cautiously.

Vonnegut profile image
Vonnegut in reply toAbbyroza

But the maximum daily dose for Flecainde is 300mg so no wonder you had problems taking 350mg! Did you not read the info that comes in the packs?!

Abbyroza profile image
Abbyroza in reply toVonnegut

My cardiologist, a respected university professor in cardiology, advised that I could take 200 mg fast-acting on top of my 150 mg daily slow release Flecainide if there was a breakthrough.

If I would have had. 2 breakthroughs in 24 hours, the total would thus have been 550 mg. The most I ever took, though, was 400 mg. in one day.

Apart from an unpleasant pre-syncope at the moment of conversion, and an increased QTc-value, it did not create any serious problems.

But it could have. So I stopped taking the slow release version (per my own advice) and now only take 300 mg as PIP, when needed.

There is no mention of a maximum dose in the product leaflet here, by the way. But it’s all over the internet.

Vonnegut profile image
Vonnegut in reply toAbbyroza

Well, as we know, we are all different but 300mg seems rather excessive. When the EP first prescribed it for me it was to take 100 mg as a PIP and I think that is the same for most people.

Abbyroza profile image
Abbyroza in reply toVonnegut

Not over here. 200 mg slow-acting is quite common. Anyway, I survived 350 mg/day several times, but I would not recommend it.

Vonnegut profile image
Vonnegut in reply toVonnegut

Perhaps the drug companies make different strengths in the US to what we have in the UK (or what your drug companies make for us!)

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Flec... is for trying to regulate your rhythm.

Mine was to control Heart Rate first from Rapid. Never mind the rythm in other words.

What was important was rate.

Over time 2 years 3 months BB Beta Blocjers were not controlling this.

But at the time my Locum introduced a CCB Diltiazem H/R on 1/2 dose 180ms CD dropped from the Bisoprolol level of 156 to 51 in 2 hours.

So CCB was best for me.

Bisoprolol controlled my BP. Diltiazem also had a little affect.

It was reduced to 2.5mg and was taken separately at night.

Now I have turfed the BB altogether,

Now Diltiazem only 120mg CD AM is working for me. My BP went low. Slight dizziness when I closed my eyes or after concentration of table tennis I had to wait for 3 minures after bending and picking up the ball.

Really in the first instance all folks who have AF diagnosis who have a rapid heart rate should be trialled on BB and CCB. Research says that.

A cardiologist will carefully go over all your history and its a bit of a maze until all your tests eg ECHO, ECG and 24hr Heart Monitor come in.

Do your research.

cheri JOY. 75. (NZ)

Deskford profile image
Deskford in reply toJOY2THEWORLD49

Thanks for your reply- clearly I need to discuss with my cardiologist asap. Have a.ready set the wheels in motion.

Vonnegut profile image
Vonnegut in reply toDeskford

You need an EP- they specialise in electrical problems in the heart which ours is! Not a plumber!

30912 profile image
30912

After 3 months of pretty persistent AF and atrial tachycardia, when given Bisoprolol and Digoxin to try and control the HR, it just made matters far worse. Eventually settled on a 320mg daily dose of Sotolol (2×160mg) which not only put me back in NSR after 27 hours of starting that dose, it also keeps a lid on my HR at around 50bpm up to 64 when walking. I've not had a bout of AF for 5 weeks now. Luxury!

Only side effects are extremeties can get a bit cold but I'm more than happy to live with that.

I was taken off Flecainide a few years ago which is now flagged on my health records as an 'alergy' but I never did find out why. Sotolol administered under the supervision of a cardiologist.

Good luck with your journey.

Deskford profile image
Deskford in reply to30912

Thank you for your contribution, yes, I need to review with my cardiologist asap. I have already set the wheels in motion. Good luck to yourself, too!

JezzaJezza profile image
JezzaJezza

Hi beta blockers are not arrhythmia drugs - they help to slow the rate (and pressure) your heart beats at. They can be very effective at managing the feeling of palpitations and flutter and skipped heart beats. You know when your heart is ‘beta blocked’ when it is at a rate of circa 40-60. This is achieved by prescribing a starter dose of 1.25 or 2.5 and monitoring and then (if needed) increasing until the HR reduces to the band of somewhere of 40-60. They also have some effect on blood pressure, but there are far better drugs for managing bp, such as calcium channel blockers eg amlodipine. Beta blockers have a half life of 4 days and can take a couple of weeks to be fully effective.

Many of the most effective arrhythmia drugs such as Class III can only be prescribed by cardiologist or an EP. These include amiodarone and dronedarone (Multaq). I’ve been on Multaq for 9 months and bisop 2.5 and I’ve not had a single recurrence of my super ventricular tachycardia (SVT). I still get the odd bout of palpitations but can then normally trace it to a known trigger. My triggers are alcohol, caffeine, stress and eating too much or too late or ultra processed food. I’ve cut out alcohol and caffeine completely and make a concerted effort to manage stress with daily meditation.

Hope this helps.

Jezza

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