Increasing Flecainide at home - Atrial Fibrillati...

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Increasing Flecainide at home

NEONBUTTERFLY22 profile image
26 Replies

Hello everyone. I hope you are are keeping safe and well. I've just had a telephone consultation with my cardiologist. He is wanting to increase my flecainide from 1 x 50mg tablet twice a day to the same strength tablet 3 times a day as I'm still having 4 or 5 episodes a month lasting from 3 to 16 hours and ranging from 120 to 147 beats. Although this month its only lasted 2 to 3 hours. I'm really worried about taking another tablet as my resting heart rate is 56. I once spoke to a 111 doctor who advised never to increase the tablet at home as its very potent and could potentially send my heart rate dangerously the other way. I told my cardiologist about this conversation and said how nervous I was he said I will be fine to increase this at home. Has anyone else been in this situation and was everything OK when you increased the tablet? I'm just worrying with my resting heart being 56. I also mentioned pip but he said I am having too many episodes for pip to me of use to me.

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NEONBUTTERFLY22
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26 Replies
pottypete1 profile image
pottypete1

If your EP tells you to change it I think you should not worry.

The maximum dose prescribed is 300mg per day but many including me are on 100 x 2 per day. You are therefore well within the limit.

Obviously if you get side effects that you don’t recognise speak again to your EP.

Pete

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22 in reply to pottypete1

Thank you. I need to put my big girl pants on and stop being such a wuss 😊

I was changed from 50x2 to 100x2 when I was away on holiday and I was fine.

in reply to

Oh and my heart rate was 49!

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22 in reply to

That makes me feel so much better. Thank you!

in reply to NEONBUTTERFLY22

So glad

BobD profile image
BobDVolunteer

Your current dose is well below the max 300mg per day so stop worrying. Add in that flecainide is a rhythm control drug not a rate control one and you will be fine. I do wish doctors who are not experts in AF would stop making unhelpful comments.

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22 in reply to BobD

Thank you. I agree doctors who make these comments have no idea of the impact it has on some people.

secondtry profile image
secondtry

You will very likely be fine with the increased dose. It happened to me, I went up from100 to 200mgs and the good news was that it stopped the AF altogether. My heart rate was similar to yours and despite it being considered a rhythm drug only, I found it did reduce my HR down, so don't be concerned if yours goes down to 50 or just above. I also wanted to start with PIP but got the same advice namely that 'it would be too much of a rollercoaster for my heart'.

PS Don't rely on just the drugs, make more changes to lifestyle to reduce anxiety & potential AF triggers

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22 in reply to secondtry

Thank you. My resting heart rate is 56 which is my concern. But reading other people's comments I can see that some are lower than mine. I don't really seem to have any triggers for mine. It can happen when I have just woken up or when I'm relaxing watching TV. It seems to have a mind of its own.

pottypete1 profile image
pottypete1 in reply to NEONBUTTERFLY22

Note that Flecainide is a heart rhythm control medication not a heart rate control medication. It is Beta blockers such as Bisoprolol that slow the heart.

If it is any consolation my resting heart rate on waking is very low around 40bpm.

I have a heart block issue hence the slow heart rate.

Pete

PamH75 profile image
PamH75 in reply to pottypete1

What do they do to address the heart block issue?

pottypete1 profile image
pottypete1 in reply to PamH75

Flecainide controls your heart rhythm and helps to minimise AF.

Bisoprolol is a rate control medication and therefore if your heart develops a fast heart rate it should slow things down and make it more bearable.

They are often used together so that Bisoprolol can reduce issues that can be created by Flecainide.

Pete

PamH75 profile image
PamH75 in reply to pottypete1

Thanks Pete. I know their role and how they operate together. I am on both. My current issue is that I have a very low heart rate most of the time and am dizzy /low energy. You mentioned you had a Heart Block- I was wondering what they are doing for that. My last ECG noted a Level 1 Heart Block but my current cardiologist did not mention it, it was my GP that told me that. I guess my cardiologist did not think it was worth addressing so I was curious what they had told you. I know heart blocks have 3 levels.

pottypete1 profile image
pottypete1 in reply to PamH75

Sorry I misunderstood your question.

I have 1st degree heart block which is bad conductivity between the upper and lower chambers.

My EP wants me to have a pacemaker but I have serious allergic reactions to many things and therefore for the time being I have resisted this option.

I have had a lot of issues recently with my Vegas Nerve and every time I eat my heart rate rises, I feel bad and then I get multiple ectopics for about an hour or two. This also happens whenever I raise my heart rate for anything, even an animated conversation.

I hope to see my EP on 9th December when I hope we can discuss all this more.

Pete

PamH75 profile image
PamH75 in reply to pottypete1

Thanks for the info. Sounds like you have a very sensitive vagus nerve. Hope you get some answers when you talk with your EP.

secondtry profile image
secondtry in reply to NEONBUTTERFLY22

Re 'it seems to have a mind of its own'....I suggest you read up here about the Vagus Nerve. More specifically, relaxation in the evening or at night was the danger areas for me so I cut out as much stress in the day as possible so the contrast between 'work & play' was not so pronounced.

Tux18 profile image
Tux18 in reply to secondtry

Secondary, this is a interesting concept about the contract between stress and relaxation! I’d never thought of it quite like that. It makes sense. I will definitely try to be more mindful of such.

Thanks for you thoughts.

bassets profile image
bassets

Like Hylda, mine was increased to 100mg while I was on holiday a couple of moths ago and I was ok, so you should be fine.

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22 in reply to bassets

Thank you. All of these comments are so reassuring.

Hannibal1948 profile image
Hannibal1948

Hi,

I take 2x100 gm per day for rhythm and it stopped my AF in it's tracks!

I also take Bisoprolol as a rate controller and has resulted in an average HR of 54bpm but has been known to drop to under 50. Mostly its 18% 45-49bpm and 71% 50-59bpm.

These numbers have not caused alarm with the GP and/or Cardiologist.

I have been offered an ablation, which I am considering with very shaky resolve, (6-8 months waiting in Leicester) as an option to reduce or replace the medication.

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22 in reply to Hannibal1948

Thank you. That's so reassuring. The cardiologist has mentioned Ablation to me too. I'm also very nervous about that but I'm trying not to think about it at the moment. I'm getting such a wuss as I'm getting older.

NEONBUTTERFLY22 profile image
NEONBUTTERFLY22

Thank you everyone. It's so good to chat to other people who have a total understanding of AF.

lindat15 profile image
lindat15

I totally relate to your concerns. My dose was increased from 200mg to 300mg as advised to my GP by on call consultant cardiologist. Was unnerved by doing this at home however all was OK and for a time stopped the breakthrough episodes which were happening every few weeks. Not entirely happy about taking maximum dose of such a potent drug however preferable to horrible episodes. My HR historically has been on the low side too and can drop on occasion to low 40s, mostly 45-50 resting now that EP has stopped the Bisoprolol. It's hard to take tablets in this situation but I guess you learn to trust your EP. It definitely helps though to get support from fellow sufferers and hear experiences similar to your own.

Equish profile image
Equish

Hi there. Sorry you are having a worrying time. I’m not experienced with AF and am still on a big learning curve. However I was increased from 50 mg flecainide to 100 mg flecainide twice a day whilst at home 8 months ago now. The benefit to me was amazing. It has really helped my symptoms and totally stopped that feeling of ‘being on the verge’ of an attack. I still get AF but it is low rate without all the other scary symptoms. Hope this helps. All the best x

tunybgur profile image
tunybgur

Hi,

I'm on 100mg am and 50mg pm Flecainide, recently increased from 2 x 50mg.

Flec doesn't normally change your heart rate, beta blockers do that, but you should have an annual ECG to make sure your Qt interval is ok, Flec can be a problem if you have an extended Qt interval, the Qt interval is a standard calculation made during an ECG, it's always printed on it.

My resting pulse is about 45 and I don't have a problem, Flec has been around a long time and is well understood, I'm sure on this dose you will have no issues.

Good luck

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