Flecainide experience

[FedupwithAF71]

Other members experiences of being on Flecainide - I have been put on 50mg twice a day and for the first 2-3 weeks I was OK but was in permanent Arrhythmia and low heart beats of 53-68 then last Sunday my heart beat went up to 90+ and was like that for 36 hours before going back into normal rhythm. I was advised to reduce the Flecainide to half a tablet in the morning and half a tablet at night and again I have been OK for a week then today my heart rate has gone up again to 90-100 beats per minute and I feel dizzy. Has anyone experienced this on flecainide and more especially when they first started taking it, did they have any problems?

[mjames1]

When your heart rate went up, do you know if you were in afib or aflutter or another arrhythmia? Are you on any medications other than flecainide?

[Drounding]

I have been taking Flecainide for many years now. I've been on 100mg am and pm for a number of those. On rare occasions I do still get AFib episodes though. When they occur AFib is preceded by ectopics and then it slips intop AFib and sometimes into what I think is AFlutter (a faster pulse rate of around 120bbm) which is regular (not regularly irregular as with AFib). The high pulse rat is not pleasant and may be what you're experiencing. I was also prescibed 5mg Bisoprolol to take am with the Flecainide.

Ironically I think (I'm not a medic and what I think may be wrong - so please don't take this as definitive) Flecainide can itself induce AFlutter, although I think the same drug is used to stop AFlutter - hence the irony.

My cardiologisdt advised me to take an additional 100mg Flecainide (max 300mg in 24 hours) and an additional 5mg Bisoprolol if I get AFib in between my two regular daily doses.

This works well for me but please discuss with your doctors what's best for you.

Interestingly my main triggers are either vagal (stomach upsets and GERD related) and colds and flu. Felcainide has been a game changer for me, it allows me to get on with my life rather than being plagued by endless epsodes of AFib.

[BobD Volunteer]

Flecainide should usually be only prescribed alongside a beta blocker to limit the possibiity of it causing atrial flutter. Are you taking one? It was also common to only start treating with flecainide in a hospital inviron for this reason.

[Dippy22 in reply to BobD]

Are you kidding me?!? I was prescribed Flec 50mg twice a day over the phone two weeks ago, along with digoxin 187mg daily (I can’t tolerate BB’s).

The follow up letter has only just gone to my GP asking them to check my U&A’s. I told the arrhythmia nurse on the phone that i was concerned that I live alone and no one would see me flake out, but she just said she was sure I’d be OK. Luckily, so far I have been ok. Disgraceful way to treat patients isn’t it. 🫤

[SuziElley in reply to Dippy22]

I also can’t tolerate beta blockers so take a calcium channel blocker instead. Have a word with your GP

[Dippy22 in reply to SuziElley]

I can’t tolerate CCB either. Tildiazem exacerbated my (mild) COPD.

[SuziElley in reply to Dippy22]

interesting as they now suspect COPD with me…….

[Teresa156 in reply to Dippy22]

Hi Dippy22,

Nowadays they prescribe fleconaide without the need of a hospital setting for the first dose ( not sure if that’s because of NHS limitations but probably). I checked this with the cardiologist when they said I could take it as a PIP. Bob is correct in what he says though as I believe they used to do it this way, but now, if the echocardiogram and tests show your heart is structurally ok, they prescribe fleconaide. As I understand it, only cardiology should and can prescribe the first prescription and then afterwards your GP. Presumably, this was the case for you?

Teresa

[Dippy22 in reply to Teresa156]

yes, it was. But! Then I paid to see a cardiologist privately to get more info and reassurance as I was denied an ambulatory ECG and not allowed to ask any questions. He immediately booked me in for a CT scan of the heart arteries, saying that this should have been done before prescribing Flecainide. He also looked me up and down and promptly reduced the dose of digoxin from three tablets to two (I’m petite!) . He said not to start the Flec until he’s seen the results of the scan. Unfortunately that will take up to nine weeks. As the AF was running out of control I’ve taken the executive decision to start taking them. Trouble is I’m due to have spine surgery in the next few weeks and may not be able to travel to the CT scan appointment if/when it comes through, so I’m investigating paying for it privately to get the appropriate meds/treatment sorted before the surgery. He also said I look like an ideal candidate for an ablation, but I’m no where near even getting onto a waiting list for that. Cardiology and the GO will spend months just trying increasing doses of medications. Such is life eh!

Also, it’s taken two weeks(!) for the cardiology letter to go to my GP surgery instructing them to monitor my U&E’s. Lord only knows how long it will take the surgery to call me in for the tests. Everything goes at a ruddy snails pace!

[Dippy22 in reply to Teresa156]

What is a PIP by the way?

[Teresa156 in reply to Dippy22]

Ah. I think cardiologists ( and EPs for that matter,) seem to have very different views of when it’s right to give Flec and when it’s right for an ablation for that matter. I just had an Echo and ECG before I was told I was ok for flec by the cardiologist. CT scan has never been offered. You are right, everything is at a snail’s pace. Follow up appointments for cardiology on the NHS are also very behind…I should have had a yearly follow up last November and despite chasing, I’m told that they’re very behind. It seems the way now.

A PIP is a “pill in the pocket’ it’s something you take when you have an episode and need to get back into NSR as quickly as poss. Some take it when they’re unmedicated and some take it when they already take a daily med, like me. I was told to take a hefty dose of 300 mg (2x 150mg, half an hour apart, with an additional BB). Although not petite like you, I’m fairly tall and at 10.7 st, I’m under the min weight of 11 st for the full 300mg which is the max daily dose anyone should take. I’ve only had to take it once,( and it was very un-nerving taking that amount for the very first time, I can tell you) but I’ll be honest, I’d try 200 in total next time as I still feel it’s too much. I think sometimes we need to go with our gut feelings in some things.

Good luck with everything.x

[Singwell in reply to Dippy22]

I think the digoxin acts to counter the potential impact of Flecainide. That's what my EP told me. People either take Flecainide with a BB or Calcium Channel Blocker as a rule, but digoxin is also used. That said, quite a few forum membes take Flecainide successfully on its own. There's no fixed rule.

[Prince123456 in reply to BobD]

my EP prescribed me Flecainide over a telephone consultation 100mg twice daily I take them for multifocal PVCs I’ve been taking it for 12 months and it’s been fantastic it’s stopped 90% of my PVCs. My EP told me Flecainide is safe to take for people with structural normal hearts.

[Jason1971 in reply to BobD]

I didn't know it should be prescribed alongside a beta blocker. I've been on Flecainide for about 8 years now. 100mg both AM & PM. I'd be slightly worried taking a BB, as I have a resting heart rate of 52 (Drops to 44 when I'm asleep). I do need to have a medication review, as I've not had one for 5 years, so I'll bring it up. Thanks for the info.

[Budken in reply to BobD]

My original Cardiologist had me on both Flecainide 2x 50mg, along with 25mg Metoprolol. He said the Metoprolol, made the Flecainide "work better". After six years of this I started having occasional episodes of afib. He cut my Met, by half 2x. Then when they continued he upped my Flec to 2x100mg. I still had the oubreaks of afib. I moved to another state, where my new Cardiologist said he thought the Metoprolol was causing the problem. Took me off the Metoprolol and I did not have another episode for over four years. My cuttent Cardiolgist here in Germany has taken me off the Flec as well, as now only PIP. I am still waiting to see how this works. Have had a couple of very short episodes. It has been a month now. Last night I experienced a fast heartbeat 88bpm and a head rush like feeling, for a half hour. It did not feel like Afib, and it was a steady but fast pulse. Not sure just what that was. My Doctor here agreed with my previous Cardiologist, that it was not necessary to take a BB with it.

[KiwiBlake]

So Bob, just to clarify your comment, one of the side effects of Flecainide is that it can speed up your heart rate. Therefore it needs to be prescribed with something that slows the heart down to counter this. In my case Diltiazem. Have I got that right? Thanks

[secondtry in reply to KiwiBlake]

My understanding is that Flec is supposed to be just an anti arrythmic drug not affecting the HR; however in my case it seemed to knock my HR down a tad from 60 to 55. In the medium to long term, apparently it may 'remodel' your AF into Flutter or on an AF breakthrough you could develop dangerously high HR.

My cardio put me on 200mgs Flec and nothing else as he said a BB would make me feel unwell; principally I expect because my heart rate was quite low around 60 and BP 115/67. I was also previously put on a Flec drip in hospital with no adverse reaction and a number of AF episodes (on 100mgs Flec/day) produced HR around 90 with only short higher bursts, so a favourable history. As BobD mentions and many others, this limited prescription is unusual so I have checked with my cardio twice, no change in his advice and in his favour it has worked fine for me for 9+ years.

I have tried to research this area and my conclusion is if you are under 70, active, low BP, HR and no comorbidities Flec on its own can be relatively safe BUT YOU MUST CHECK WITH YOUR MEDIC FIRST.

[Prince123456 in reply to secondtry]

Flecainide is safe for patients with structurally normal hearts

[BobD Volunteer in reply to KiwiBlake]

Normally yes but there does seem to be a somewhat cavalier attitude to this drug in some quarters.

[BeeBee79]

I had a terrible time on Flecanide - it sent me into a tailspin so I didn’t last a week on them. Are you being monitored on them to make sure it doesn’t prolong your QT interval?

[Prince123456 in reply to BeeBee79]

They don’t need to monitor you they just do one ecg after 2 weeks to check your PR, QRS and QT prolongation, Flecainide is safe to take if you have a structurally normal heart. I take Flecainide alongside Nebivolol it’s worked fantastic for my Multifocal,PVCs

[BeeBee79 in reply to Prince123456]

it’s suspected that Flecanide contributed to or was the cause of my cardiac arrest shortly afterwards. Had I had a follow up ecg to check my QT, it may not have happened

[Prince123456 in reply to BeeBee79]

what was the outcome of your cardiac arrest ?

[BeeBee79 in reply to Prince123456]

Alive to tell the tale thanks to my husband coming back into the room and giving me CPR. I’m now fitted with an ICD and pacing leads - I’m 43

[Prince123456 in reply to BeeBee79]

so happy you got sorted i also have an icd fitted due to previous runs of NSVT. Did the paramedics shock your heart ?

[BeeBee79 in reply to Prince123456]

Thank you - glad to hear you’re well now and have your security device in.

My husband and his uncle managed to bring me back with CPR - I didn’t need any shocks thankfully!

[Prince123456 in reply to BeeBee79]

ok. So your heart didn’t actually stop then because CPR doesn’t restart the heart it only keeps oxygen flowing to the brain. When the heart stops it needs shocking

[BeeBee79 in reply to Prince123456]

I didn’t know that but I get guess I never got to that stage as my husband was right next to me when it happened and immediately started CPR. I was taking agnonal breaths which alerted him which he initially thought was a seizure but then he noticed I wasn’t breathing, my lips were blue and my skin was waxy plus I lost continence 😞

[1Golf]

it’s a bear and yes all sorts of strange things happen with this drug. Just roll with it and let the body regroup. This cardio meds are strong.

[willec49]

the variety of responses here simply illustrate tha very individual and unique nature of this phenomenon and there is no set course of action for everyone. Regarding the need for a beta blocker to be combined with Flecainide for heart rate control , it is generally the case but not always. I was initially just given Metoprolol for my paroximal Afib which didn’t work. So Flecainide was added which, initially, caused ectopics and arrhythmias but settled down after a week or so. HOWEVER, being that I already had Bradycardia with heart rate in the mid 40’s, my doctor dropped the metoprolol and I’ve been on just the Flecainide for the past four years which has been very helpful. I had a cyro ablation in March of last year and am now just taking 50mg of Flecainide am and 50 mg pm. And yes, as others have pointed out, because my echocardiograms, etc show normal heart structure and no other underlying conditions, I was cleared for just the Flecainide alone. Good luck!

[Karendeena]

Hiya, yes me, it caused me to have more episodes, so I paid to see an EP and he said Flecainide wouldn't have been his first choice for me so he changed me to sotalol which better controls my afib. Apparently, in some people Flecainide can cause pro-arrythmias

[Singwell]

Reading your report it sounds like you might need another med to act together with the Flecainide. This might be a calcium channel blocker such as Diltiazem, or one of the other meds mentioned in the responses above. Or, it could be that this drug does not suit you. I would get checked out - request a full ECG.

[Paulbounce]

Hi Fed up.

I can only talk about my personal experience with flec. I had a cardioversion and had two years in sinus. I feel sure this was down to the flex - started on 2 x 50mg a day which was upped to 2 x 100mg a day after a month or so.

I recommend it but of course our bodies are all different - whats good for the goose may not be good for the gander with flex!

Paul