Flecainide making me worse

[eagle-eye]

I've had an on and off relationship with Atrial Fibrillation since 2017. I've had two ablations and three cardioversions but my AF kept coming back. After my last ablation I stayed healthy until the summer of 2023. My blood pressure then went through the roof and I started getting palpitations. My problem then became SVE and PVCs while my sinus rhythm was good.

I was on a waiting list for a ventricular ablation for 8 months. On the day of the procedure no palpitations were visible and the ECG showed normal sinus rhythm which meant the procedure could not take place.

Two months later AF returned and it hasn't gone away. I was put on Flecainide in September but it has done nothing. I am due to have a consultation with a cardiologist but that might take months given the poor state our health service is in. I am also on Verapamil which some medical websites say should not be prescribed with Flecainide.

I am a bit concerned that Flecainide is actually making me worse. It hasn't done any good. Has anyone on here had a bad experience with Flecainide? I would be very grateful to hear from you.

Thank you,

[Karendeena]

Yes, I had a problem with flecainide. It gave me pro arrythmias. My heart rate would escalate and be all over the place. It gave me these 'episodes' weekly. I paid to see an EP and he immediately took me off it and put me on Sotalol. I did have an ablation though at the end of March . I continue to take Sotalol as my EP likes 'belt and braces' in his words, not mine

[eagle-eye in reply to Karendeena]

Thanks to everyone for the replies. It's good to know that I'm not alone. When the cardiologist put me on Flecainide he said it was a very effective and fast working drug. I want to ask his advice on how to proceed but he is on leave and will no doubt return to a very busy inbox. I contacted my GP this morning so I will hopefully get a call back later on. After googling Flecainide I'm wondering if my AF is the right type. I don't get episodes it's non stop.

[Canale]

yes - I take flecainide with Bisoprolol for af. I have found when I take it and if I take with food makes a difference to how it affects me. I try to space it out with other meds and take with food or close to when I am eating.

I have found it to be a harsh medication in general and something I need to make sure and remain fairly relaxed after taking. It’s a balancing act, which I think is different for most - it’s hard.

[eagle-eye in reply to Canale]

I always seem to get lots of side effects. The worst has been from Amiodarone. It's also the only one to stop AF. It's not a drug you can take for too long though.

[CDreamer in reply to eagle-eye]

Amiodarone is even more toxic as it’s Iodine based. My husband has been on that for about 6 years now, thankfully with minimal effects but it has kept him in NSR which in turn helped heart failure so the quality of life gains have been more than the offset by the risks but he seems to be able to tolerate drugs whereas I’m a doctor’s worst nightmare to treat!

[secondtry]

I understand Flecainide can cause more problems than it cures if your heart is not in good condition; have you had an echocardiogram and/or other tests?

[eagle-eye in reply to secondtry]

I've had echocardiograms before but not recently. The last one a year or so ago picked up ventricular arrhythmias but not AF. I recently had a Holter monitor attached to my chest for seven days but haven't seen the reults yet.

[secondtry in reply to eagle-eye]

Holter monitor for 48hrs was useful for me.

[Poochmom]

I was put on Flecainide and it gave me different arrhythmia. I couldn’t take it on a regular basis because of that. I was prescribed it by a cardiologist. I then went to an EP and he told me to use it as a PIP. I did and it worked like a charm for over a year until I had a minimize in Houston Texas in 2022 and haven’t needed it since. It was my best friend after being my worst enemy.

[mike1961 in reply to Poochmom]

What different arrhythmia did the Flec precipitate?

[Poochmom in reply to mike1961]

I don’t know exactly what it was but it was different from AFib or flutter. It was just whacky. Heart rate didn’t increase which with me AFib always did, but it sure was irregular and different from AFib. I don’t even know what to call it as I didn’t have a Kardia then so I couldn’t find out. May have been very close topics or something. 🤷‍♀️. I just know I couldn’t do it.

[ozziebob in reply to mike1961]

I recently had a very unusual and distressing 12.5 hour AF event. It included 6 novel Kardia determinations (2x Unclassified + 4 xTachycardia, all ecgs 60-90 mins apart and in range 135-145 bpm) which had me wondering about a possible harmful effect of the 100mg PIP flecainide I took at the start. I have subsequently tried to get Barts Arrhythmia Nurses to look at these ecgs to determine whether I need to be concerned and request a re-referral to their service, but no-one was interested. Very disappointing!

[eagle-eye in reply to Poochmom]

I have had a telephone consultation with an EP and she referred me for a CT Angiogram. Unfortunately the results showed some plaque blockages. I was then referred to an interventionist cardiologist to check my coronary arteries. That's another waiting list. I asked if the artery problems were a factor in my other problems but haven't had an answer.

[Poochmom in reply to eagle-eye]

Interesting. I had a CT angiogram before my Minimaze surgery and I was all clear so I have no idea what caused my Flec arrhythmia. I do know that is a side effect of Flec though or that’s what I was told.

[ozziebob in reply to Poochmom]

Was that with Dr Wolf? or somewhere else?

[Poochmom in reply to ozziebob]

Yes, with Dr Wolf. Best doctor in the world and the best medical experience I’ve ever had. NSR going on 3 years now. And with the LAA closure no more NOAC even if AFib returned

[MrBinks]

I was prescribed Flec after a consultation with the cardiologist that was 10 months in the waiting.

Since being on 50mg twice a day it feels like I’m having daily episodes as opposed to once a week. I don’t know whether to stop or what to do as I can’t get hold of a cardiologist!

[eagle-eye in reply to MrBinks]

Cardiologists are hard to find. My next door neighbour is a nurse. She said a lot of the NHS doctors were moving abroad.

[CDreamer]

Yes - Flecainide can make things worse so I would also be concerned. I took Flecainide for several years but had to stop taking it as there were signs I was developing other arrhythmias - which Flecainide can do. I was also getting break through AF although I was taking the highest dose of 200mg x 2bd with extra 100mg if I got a breakthrough episode.

My suggestion would be go see you GP asap and ask them to write to your cardiologist requesting either urgent appointment or information as to next course of action. My view is that if a medication is not helping and could be harming then why would we be taking it?

Flecainide is a toxic drug and therefore you should also be having regular blood tests (every 6 months but your GP should be doing that automatically - if not ring and arrange).

Regular ECGs are also important to determine whether or not there are signs of other arrhythmias and this is where a kardia device which many of us have and can be very helpful so you can monitor yourself and keep the ECG trace to take along to your appointment. Back in the day my EP would reply to Kardia traces I emailed to him if I was concerned or if the medication was not holding the AF - it is evidence and doctors will rarely change meds without evidence because many were taught at medical school that all patients lie - of course we don’t but we may under or over emphasise symptoms and experiences.

I’d also go privately f you can afford £200-300 to get an initial private consultation with an EP - you may still have a wait but it may not be as long. You might also try ringing the secretary of the cardiology department you were originally referred to and asking how long the wait is and because of your concerns is there someone you could talk to such as an Arrythmia nurse if you cannot speak to the cardiologist.

I have found these days one has to be a lot more proactive with secondary care, we have an excellent GP surgery and see moves to offer many more services to GPs such as Physiotherapy, Pharmacology, Social Prescribers etc but we are always going to need secondary care. I was recently referred for urgent MOHS surgery for a skin cancer only to be told that there is at least 12-18 months wait because so few surgeons perform this type os specialism. I went privately and by coincidence found myself with an appointment with the exact surgeon I was originally referred to - who had recently left the NHS.

There are still some excellent NHS clinics with wonderful medical teams but finding them is becoming more difficult as the number of sick grow and the number of those qualified to look after us diminishes.

[mike1961 in reply to CDreamer]

I’m curious - having taken 100mg Flec since 2008 with no issues - what were the proarrhythmias you experienced?

[Pommerania78 in reply to mike1961]

Did the Flecainide totally eliminate the Afib? Thanks.

[mike1961 in reply to Pommerania78]

Worked well 2008 to 2018 (first AF 1999 but episodes every 2 or 3 years until early 2008 when I had one/month for first four months of year so started daily Flec 100mg BID then which kept episodes to one per year (few hours long and converted back to NSR with extra 200mg Flec). Started getting one episode/month again in 2018 so had first ablation (PVI) then went persistent after C19 in Oct 22 and had second more extensive ablation in Jan 23 and OK since. Still take 100mg BID Flec to help keep things quiet. But will taper off it as I approach 70 (63 now) and see where I go from there. All in all, Flec has for me very much been a friend rather than an enemy so far on my AF journey (mother and both her sisters AF in mid thirties).

[CDreamer in reply to mike1961]

Flutter and long QRS but far more devastating was that it also exacerbated a latent neurological condition which thankfully, 10 years after the event, I now have under control and am able to reduce my immune suppressants.

[mike1961 in reply to CDreamer]

Was the flutter ever 1:1?? My own QRS has always thankfully been OK (as have all other ECGs, echos etc.).

[eagle-eye in reply to CDreamer]

You are right about being proactive. For a long time I just waited to be contacted or followed up after a procedure or a consultation. I took the view that I was just one of hundreds of thousand people waiting to be helped and I wasn't special. My son and several mates nagged me into being more proactive and it has worked to some extent.

[Visigoth]

Yes - flecainide made me worse so I was taken off it very quickly. It’s known that it can cause arrhythmias in some patients. Maybe consult your GP if you can’t get to see a cardiologist very soon? The GP should be able to get speedy advice from a cardio - my GP does.

[eagle-eye in reply to Visigoth]

Just got a text message from the GP. He says stop taking Flecainide immediately. Now I just need to find out what the cardiologist has got planned next. Cheers.

I got two letters from the hospital yesterday which surprised me. I'm going to have another angiogram in a couple of weeks. This will be the one where they stick a wire in your groin and proceed up your artery. I'm not sure if they are going to do anything about the blockages but I hope so. The other letter was an appointment for a telephone consultation with a cardiologist about what to do next about my AF. Hopefully this will give me a chance to get back to some kind of normal life. Just to be able to walk to the corner shop without running out of breath would be fantastic. 😀

Does anyone know if plaque blockages can trigger AF?

[Cookie24]

Flecainide made me worse so switched to Propafenone.

[BaileyC57]

I took it for a year and was a nervous wreck because of the side effects, he took me off and on a beta blocker and doing better! I have AFIB all the time but beta blocker helps and my heart rate is in the 80's and 90's range and at night in the 60's and 70's!

[ozziebob in reply to BaileyC57]

Can you describe those "side effects" of flecainide? did it include new arrythmias? and what dosage of flecainide were you taking? Daily or PIP?

[BaileyC57 in reply to ozziebob]

I took 100 mg in the morning and 100mg at night! I just felt off and nervous about the drug , but they took me off after one and half year because I got thicking around my heart and it did help the high heart rate! I have a friend takes it for 5yrs and is doing great with it