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New AF episode - first time with flecanide

Sixtyslidogirl profile image
27 Replies

Hi wise people

I am in AF after a busy day of (with hindsight possibly) too much exercise and a flu jab. So my cardiologist gave me some flecanide to take if happened. So have taken apixaban, bisoprorol and then half an hour later, the flecanide. As I have never taken it before, I am wondering what to expect having read the rather long and frightening list of side effects. Anything to share of first time experience and things to look out for? What I really want to do is go to bed and hope it’s gone in the morning.

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Sixtyslidogirl profile image
Sixtyslidogirl
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27 Replies

Hi there, firstly I need to point out that I’m not a medic or medically trained but I have some experience of taking Flecainide, both as a regular daily maintenance dose and as a one off, pill in the pocket dose if AF kicks off. From what you have said, the basis upon which Flecainide has been prescribed is a bit unusual. Flecainide is a powerful rhythm control drug which needs to be treated carefully. Generally, when it’s prescribed as a maintenance drug, it’s often done in a controlled environment and the patient is monitored to ensure there are no adverse reactions. If it’s taken as a one off pill in the pocket medication then a precise does is given and under no circumstances must the patient take more than 300mgs within any 24 hour period.

Before I say any more, I would appreciate it if you say you are familiar or aware of any of these restrictions when taking Flecainide……thanks

Sixtyslidogirl profile image
Sixtyslidogirl in reply to

Hi Flapjack,

I have been told just to take 50mg once. I have a GP appt in the morning, about something else as it happens. I got the flecanide from private cardiologist who has done echo so hoping he is happy with heart structure as I understand normal structure is required. I have a moderately dilated left atrium but he didn’t seem too worried about that.

wilsond profile image
wilsond in reply to Sixtyslidogirl

Your heart HAS to be structurally before flecanide can be given xx

Slidingdoors99 profile image
Slidingdoors99 in reply to wilsond

Thank you for clearing up that one for me! I have suggested it in the past and the consultant told me that it wouldn’t be suitable… I have HCM so that explains why!

in reply to Sixtyslidogirl

Thank you. This sounds a bit unusual and first I will explain why but the important thing is that you follow the advice of your doctor and under no circumstances do anything different. The dose prescribed ie 50 mg is low and should not create problems in terms of side effects. Very often a daily dose of 2 x 50mg is prescribed before and after an ablation or a cardioversion to help keep the patient in normal sinus rhythm but this has to be taken whilst on a rate control drug such as Bisoprolol. To be honest, I’m not sure that one dose of 50mg is going to harm you in any way and it might just be a means of seeing how you react to it hence the appointment with your GP.

I suggest you follow the instructions given by your cardiologist and not worry too much about experiencing any side effects. Hopefully I assume that is the beginning of a treatment plan for the longer term but it’s a bit unusual, possibly because a private consultation might lead to something being done on the NHS. Have quickly read some of your earlier posts I see you are a keen cyclist. You may already be aware of the link between extreme exercise and AF but please be careful not to overdo things until this is sorted out. Good luck tomorrow and please let us know how you get on……

OzJames profile image
OzJames in reply to Sixtyslidogirl

I had slightly dilated left atrium too and Cardio said everything else looked sound so said ok to use Flecainide. I used it before and after a Cardioversion for a few weeks before and after. No problem aside from the odd funny feeling in the chest but went away after a couple of hours

wilsond profile image
wilsond

Please don't fret overmuch about possible side effects. You have been given this, after consideration from your prescriber, so deemed to be suitable. I have had it for years, PIP and daily doses Yes,it is a powerful drug. It needs to be to override the powerful silly nonsense going on in the electrics of your heart.

Let it do its job and you will feel the benefit I'm sure. Its quite a low dose, actually,for a PIP.

Hope you settle down soon xxx

BobD profile image
BobDVolunteer

Going to be and resting sounds like a plan to me. Others have said everything else.

mjames1 profile image
mjames1

Of course I don't know any of your medical history but the prescribing doctor does. But what we do know is that in the maturity of cases, the major side effect of PIP flecainide is normal sinus rhythm within 1 to 4 hours :) You are also additionally, protected by the bisoprolol. Relax, and try not to worry. Best of luck.

Jim

mjames1 profile image
mjames1

I now see from your follow up post that your Flec PIP dosage was only 50mg. In most cases it's between 100-300mg. Still better to start too low than too high. If the 50 mg does not work, notify your prescribing doctor for further instructions, but don't do anything on your own. We all have different thresholds for these drugs and 50 may be all you need.

Jim

secondtry profile image
secondtry

Don't worry too much Flecainide is a relatively old tried and tested drug.

Definitely moderate your cycling (as Flapjack has already mentioned) and also stress levels generally, particularly if you have also had the Covid/flu jabs. There are a number of heart drugs for AF and it may take a little while to juggle these and the dose levels to find out what is best for you.

Please note occasionally if the circumstances fit (like in my case) a cardiologist will suggest you take flecainide but don't start on Bisoprorol or any BB or CB; I understand this is because it can make you overly tired/unwell feeling but check that with your private cardiologist (not GP) as that selection is not common.

I have been on just flecainide for many years with no problems and think I was put on just that drug as I was a sporty type at 60 yo with no heart or other comorbidities. I have also adopted many lifestyle changes as an insurance policy against a rapid breakout of AF, including changing sports and moderating all activity.... life is still fun 🙌 😁.

Sixtyslidogirl profile image
Sixtyslidogirl in reply to secondtry

Thanks secondtry ,

Whilst I do cycle, I am really a runner. I have cut down massively, made most all the recommended lifestyle changes: hardly any school, caffeine, Zoe nutrition to get inflammation levels down. What sports did you change from and to?

secondtry profile image
secondtry in reply to Sixtyslidogirl

Stopped tennis (couldn't resist going for a drop shot 😆) and skiing (altitude & adrenaline not good for AF). Started walking basketball - great fun, all ages attend and some don't understand the term 'walking'! I also walk daily with Nordic poles for half an hour, which I think is v beneficial - moderate exercise and training the heart.

I am lucky as I am a versatile sports person (not amazing at any!) so I can easily swap, others may find that impossible but give it a try, you can always go back slowly once your AF is controlled.

Sixtyslidogirl profile image
Sixtyslidogirl in reply to secondtry

Thanks, very interesting. I can’t actually bear the idea of giving up running altogether so hoping that slow runs with good rest days will work. I managed 20 weeks without an episode so the clock is starting again now. Time will tell whether I can keep it at bay for longer. As John Day says, constant vigilance is required.

secondtry profile image
secondtry in reply to Sixtyslidogirl

You've got it, steady running may be fine but definitely no sprints.

John Day's book & his experience is good. Constant vigilance's closest companion is anxiety, so take early action with that to make sure it is kept in control - the principal methods I use are slow breathing nose only when I do my daily walk (see YouTube James Nestor & Patrick McKeown), proper engagement with Nature and prayer.

I found it interesting that nose breathing increases Nitric oxide by x6 and humming x15.

in reply to secondtry

Obviously Sixtys needs to check with her Cardiologist if Flecainide is ultimately prescribed for daily use but what I have been told by a number of different EP’s and Cardiologists is that if Flecainide is taken as a regular daily maintenance dose then either a beta blocker or calcium channel blocker needs to be taken daily as well otherwise it could cause other, more complex arrhythmias than AF to develop. This is not necessary if Flecainide is only taken as a Pill in the Pocket at irregular intervals. Not sure if this conflicts with what you are saying but thought I should mention it. There may be individual cases where a specialist feels this is unnecessary so usual caveat, follow the Doctors instructions……

Sixtyslidogirl profile image
Sixtyslidogirl in reply to

Thanks Hidden . I didn’t get on very well with bisoprolol on a daily basis as it took my HR too low. So if anti-arythmic needed daily that will be another conversation.

in reply to Sixtyslidogirl

I was in a similar position, particularly as I was very asthmatic as a youngster but I changed to Diltiazem (calcium channel blocker) and have never looked back but fortunately, I have largely remained in NSR since 2014 🤞🤞🤞🤞

Sixtyslidogirl profile image
Sixtyslidogirl in reply to

That’s great to hear.

secondtry profile image
secondtry in reply to

My cardio said in my circumstances OK to take Flecainide on its own. One or two on this Forum are following the same protocol but because we are clearly in the minority, I have double checked the position on my annual check-ups but so far he is maintaining his initial advice. His last comment was the older I get (now 70) the less not more chance of a serious rapid arrhythmia break out. I feel I can't challenge this further as I have had great QOL for 10 yrs. Who knows what tomorrow brings....🫣.

in reply to secondtry

Sounds pretty good to me!!

Sixtyslidogirl profile image
Sixtyslidogirl

Thanks everyone,

I was still in AF at 5:30am, so emailed cardiologist to ask for advice about flecanide, as that was outside the 1-4 hour window. Then the shopping delivery arrived around 6am and when I carried the bags back, I thought I felt normal, and indeed my HR seems steady. My frontier X device stopped working so can’t absolutely check but seeing GP this morning so can confirm.

The last couple of episodes have stopped around 5-6am without flecanide so not sure that 50mg had much to do with it. I’ll never know. Quiet day today! I was monitoring ectopics pretty closely since last episode in May but suspect I had also got complacent. I had a weekend of coastal walking and then did quite a lot yesterday, obviously too much. It is a fine line to tread, for me.

Vonnegut profile image
Vonnegut in reply to Sixtyslidogirl

When first prescribed flecainide as a PIP, by a private EP I saw, after an echocardiogram had shown nothing structurally wrong with my heart, but 1.25 mg of bisoprolol was too much for me to take daily, it was 100mg to be taken with the addition of 1.25 mg of Bisoprolol if the heart rate was over 140 twenty minutes after taking it, which hardly ever happened. Now I take 100mg Flecainide twice daily and only had an episode around the time I caught covid (wouldn’t have known apart from a positive test!) stopped a few hours later after an additional 100mg as a PIP, reaching the maximum daily dose.

southkorea profile image
southkorea

On my experience it just makes you feel very washed out

Thomas45 profile image
Thomas45

I took it for 12 years regularly, twice daily, not as a pill in the pocket as you appeared to be doing. I took initially a dose of 50mg a day, which was gradually increased to 150mg x 2 a day.I felt much better, free of AF episodes except for 1 or 2 short, (10-20 minutes), episodes per YEAR.

I had no side effects.

I was prescribed Bisoprolol by a well-meaning hospital doctor. I had 2 rare side effects: urticaria which has lasted 6 years, and sudden exacerbation of asthma. By sudden I mean I was fine one minute, but two minutes later I was gasping for breath. An ambulance was called and I spent two nights in hospital.i prefer to take Warfarin. Tried a DOAC, Rivaroxaban, but side effects so bad I was taken off it after 12 days.

in reply to Thomas45

Spiders!! Predictive spelling strikes again 😂 more seriously, were you prescribed an alternative BB?

lizzieloo2 profile image
lizzieloo2

I too was wary about taking 100mg Flecainide as a PIP but eventually tried it with no ill effects so was happy to take it on following occasions. I did worry when I had to take a further tablet when the first one didn't work but again, there were no ill effects although I only ever took two tablets on one occasion.

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