Me again! Flecainide related query.

[Apple88]

Hello everyone.

I didn’t know whether to start a new thread or not, so this post is also on the bottom of my thread on Tuesday. It was amazing to have such a lot of helpful replies.

I woke up this morning on day 4 of the flecainide and was immediately in AF. Took Kardia reading and was 150 HR on waking & very erratic.

I took periodic readings for the next couple of hours - all of which showed AF but rate did come down to around 100. I didn’t need the readings to be honest - it was really banging.

Anyway, I was hoping to draw on all of your experience. Do you think that this is to do with the flecainide? Or just another episode of my PAF. Or maybe to do with stopping bisoprolol?

It’s now 7pm and I’ve been in AF for quite a lot of the day.

My ECG isn’t until Wednesday now. They weren’t sure about letting me go for it at the clinic until I persuaded them that I didn’t have any Coronavirus symptoms. I think it’s going to be difficult to raise other health concerns whilst this is going on.

Thanks in advance if anyone can share any similar experiences.

[jeanjeannie50]

I would have a word with your GP tomorrow as Flecainide can sometimes cause other arrhythmia's. A lot of people take a small dose of a beta blocker alongside it to prevent this from happening.

Jean

[Apple88 in reply to jeanjeannie50]

Thanks for the reply again. My GP is closed tomorrow. The beta blocker was stopped due to my low HR. I’m not sure what to do really. Ringing 111 isn’t really an option at the moment with what they’re having to deal with.

Do you think that this might be a side-effect then? I guess it’s only the 4th day. I just wondered if it was normal.

I’ll see how things are tomorrow. 🤞🏼

[lindat15 in reply to Apple88]

Currently on flec with lowish BP and low HR when in NSR. I take min dose of Bisoprolol (1.25mg) which doesn't lower things too much.

[Apple88 in reply to lindat15]

Thanks for replying. I took 1.25mg of bisoprolol for a year & by the time I was taken off it my resting HR was in the 40s - hence the decision to take me off it. I’m on list for ablation anyway so flecainide is for me to try in the meantime. I just didn’t expect things to shoot up so much!

[lindat15 in reply to Apple88]

My resting HR is in 40s and have mentioned to EP on couple of occasions- his response was provided feeling okay( no dizziness etc) then not to worry about the numbers! Advice varies so much around AF.

[Apple88 in reply to lindat15]

Thanks again. I was really dizzy and have been struggling. Have been off work too. I’m hoping the flecainide will improve me enough to go back.

Although who knows what’ll happen with things the way they are at the moment!

You’re right about different advice though. I feel like I’m still looking for the right balance.

[dmjtanner in reply to lindat15]

Same here, mine even goes into the 30’s during sleep. It is strange how advice differs.

[RajaRua in reply to Apple88]

When I started on Flecanide I was taking 100mgs twice and day. I asked the doc what I'd do if I got AFib and he said I wouldn't but if I did to take an extra Flecanide. This is what I have done over the years since starting on Flecanide and it does work. Might take a few hrs but it works. Also it's good to just relax and meditate if you can. Or listen to very relaxing music. I also have a supply of Xanax which I only use when I'm in AFib. I Just take a half. My AFib is anxiety driven these days. This is a very anxious time for everyone and us AFibbers need to work hard at not getting too worked up about the precarious situation we are finding ourselves in with Covid-19. I'm not saying you should take the extra Flecanide but It might be worth asking your GP about that and do it soon if you can.

[Apple88 in reply to RajaRua]

That’s interesting. Thank you.

I am meant to see EP again after my ECG on Wednesday so hopefully I’ll be able to report any episodes, and ask if it would be okay for me to do that.

Problem is, I’m only on a one month repeat prescription and if I take extra I’ll need to get them every couple of weeks. It’s definitely worth discussing that possibly though.

Today has been completely different. No Afib so far and much lower HR.

You’re right about the anxiety too. I worry so much about this condition - and am now worried that I’m not going to be able to get any help because the NHS are (understandably) swamped with dealing with Coronavirus.

Tough times for everyone.

[secondtry]

When I started on a low dose of Flecainide x2 50mgs per day and nothing else, I got 9 episodes in the first month and was offered an ablation. Instead, I requested a medium dose of Flecainide x2 100mgs per day and that stopped the AF episodes. However, don't do this without getting approval from your cardiologist/EP as we all react differently.

[Apple88 in reply to secondtry]

Thank you. I’m down for an ablation anyway now. Maybe I’ll have to take a higher dose.

[BobJ52]

I am on 50mg flecainide bd but cardiologist also kept me on bisoprolol as well 5mg daily as this helps stop flecanaide arrhythmias occurring. I suggest you talk to you cardio team before doing anything

[Apple88 in reply to BobJ52]

Thank you. I will talk to him as soon as I get the opportunity. Bisoprolol was stopped due to low HR.

[Buffafly]

Flecainide is supposed to prevent AF, not cause it. What it can cause is other arrhythmias which can be more serious than AF, hence the use of Bisoprolol or Diltiazem in combination to prevent tachycardia. It's good that the rate has gone down to 100 - maybe that is the influence of the flecainide? I'm afraid I agree, no medic is going to care about your AF anymore unless you are collapsing 😷

[Apple88 in reply to Buffafly]

Thanks. I know. Very uncertain times at the moment.

Today has been different. No AF as far as I can tell and much lower rate. Resting at around 60.

I just got a bit worried yesterday but I guess the nature of PAF is that it’s unexpected.

[Sunstreaker]

Hi Apple, me again , we started Flec on the same day. I have Ben having problems too. Afib episode and tachycardia 150bpm. I think when I was in the Bisoprolol although I went into afib most days my rate stayed low, so this Flec I was thinking is more rhythm than rate control and not doing any good. First phoned pharmacist who said she would question a prescription with both Bisoprolol and Flecanide as they do have similar effect. However things do seem to settled down a bit now on day 5. I called GP who was wary of altering anything but did managed and ECG before they shut their doors due to virus measures. ECG showed atrial Arrythmia, but I got no feedback. I’m thinking is it , give it a chance and see what happens, does it need to be increased or is there a need for a bit of Bisoprolol. I don’t want to give up on the Flec as it helps many and if it worked may influence whether I go for ablation. So I think it’s we may be experiencing a change from the Bisoprolol which we were use to.

[Apple88 in reply to Sunstreaker]

I think you’re absolutely right. I guess the combined effect of no beta blocker and a new drug is going to have weird effects.

I don’t want to give up either as I’m really hoping that it’ll have a positive enough effect for me to get back to normal.

Glad you got your ECG done - will it be sent to your cardiologist? That’s what meant to be happening with mine, although it’s not until Wednesday. I hope I can still go & they won’t have closed their doors by then.

It’s handy to have a buddy that started on the same day!

[Janey1955]

I started flecainide without a beta blocker as my heart rate can go down to 33bpm in the night and a risk the beta blocker may drop that further. To be honest I had three attacks in two weeks whilst on it and for20 hours at a time. Normally I have an attack about every 4-6 weeks. So I was advised to come off it and take 2x50mg if I get an attack to see if that works.

[Apple88]

Hello again.

I’m 10 days in and had a horrible AF episode yesterday again. Really struggled to get it to slow down.

Have spoken with GP who doesn’t want to change things without cardiologist say so, but I can’t get to speak to/see the cardiologist at the moment with all that’s going on.

I’ve had more episodes of AF than I’ve ever had before since starting this. Most of them fairly short, but 2 really horrible ones now.

Am starting Apixaban today too now. I feel so worried about going back to work, but feel a fraud for being off with “just AF”.

Don’t know what to think/do. Sorry - I think I just wanted to get this off my chest this morning.