Was everyone who has been prescribed flecainide monitored when they first started taking it? I've just been discharged from A & E with a prescription for flecainide to start taking immediately. I had the two part myocardial stress test 3 months ago.I've been prescribed 50 mg twice a day but told to carry on with bisoprolol 3.75 mg in morning and 2.50 mg in evening.
I live alone and worried about dealing with possible side effects.
You ask a good question and I have seen various protocols from different ep's.
My ep's protocol is that you must pass an exercise stress test prior to starting Flecainide. Sounds like you did that part recently.
He follows that up with an ekg one week after you start Flecainide to make sure no troublesome ekg changes. Additional ekg's would then be taken for any dosage increase and/or if symptons present.
I had one such troublesome ekg change after a dosage increase and the dosage was then reduced.
Flecainide is a powerful drug and for safety reasons it's usually prescribed with a beta blocker and/or calcium channel blockers. Sounds like you have got that covered with the bisoprolol.
Of course all situations are different, but I had a rough first week on the same dose of Flecainide you're taking with numerous arrythmia's. I asked to up the dosage, but my ep said give it a little time. By week two my body adjusted and it did what it was supposed to do -- it kept me in sinus rhythm.
Jim
Thanks Jim, that's comforting. Hope I get the same result as you. It wasn't the exercise stress test I had. It was the two part Myocardial Perfusion Scan with an injection to stress the heart for the first part of the test.
Hi
I had an ECHO and ECG.
As my back chamber is enlarged I can't have any FLECAINIDE,ABLASTION or CARDIOVERSION.
Care is required as to your suitability.
On a CCB and BB and have controlled BP and H/R. Controlling these actually
help the AF in its severity.
cheri JOY. 74. (NZ)
I was started on Flecainide while in hospital and then after being discharged I had to go for an ECG at my docs surgery about 4 or 5 days later. All was ok.
Jean
Thanks Jean. I think I might wait until Monday to start taking flecainide and ring my surgery Monday morning to let them know about it in case news from A & E travels slowly.
My first dose of Flecainide was by IV in hospital. They wheeled my bed round so I could be seen from the nurses station and kept an eye on. I was fine and discharged the next day with tablet form of Flecainide. Never been prescribed a beta blocker with it and that was @16 years ago. Been on same dose of 50mg bd since.
Thanks Frances, that's interesting and hopeful. Interesting you were never described a beta blockers with it but obviously working for you.
Didn’t know about them at the time and everything was new to me. I wouldn’t/couldn’t have them now as my resting HR is late 50s-early 60s. x
Same for me, except I was given the prescription by my cardiologist and was not monitored until my annual check up. No problems though.
Thanks Topsy. Maybe monitoring is in the past now. Pleased to hear you had no problems.
I’ve been on the maximum dose 2x150mg per day for the last 20 years and not experienced any obvious side effects.
Thanks Rightwinger22, that's good to know.
I have been given flecainide as a pip but haven’t had occasion to use it yet thankfully but worry if the first occasion I have to use it is on a plane, in a foreign country and it causes a problem . I didn’t have any specific checks but they were monitoring my heart going at 180bpm in AF in the hospital I would think that qualifies as a stress test . I have decided I am going to pay for the extra analysis on my Kardia and if I have to take it hopefully I can check if the qrs ? Interval extends. I rang the BHF nurses here and they weren’t worried about my taking it the first time without supervision said standard practice now
Thank you Peony4575. That was a good idea taking advice from BHF nurses and I think I'll do what you're planning and pay for extra analysis on kardia.
same. I am not on any medication as PAF and Chadsvasc score 1. Last AF episode on 15th May and flecanide prescribed after that. So have bisoprolol, apixaban and flecanide to take as PIP if I have an episode. I haven’t taken any flecanide yet. I have had various tests, echo, stress so hopefully cardiologist knows what he is doing.
It seems you are fortunate enough to have a nimble thinking cardiologist rather than a protocol driven one . I have had two episodes the first two, two and a half years apart , then the last one on New Year’s Day . Cardiologist leaned on me to take anti coagulant . I missed one once, what alerted me was screaming off my head level anxiety. I don’t do well with anything that crosses the blood brain barrier, so I am stuck on them now and god help me if I had to stop them suddenly for a medical reason . Out of interest how long after an episode were you told to take the anti coagulant for ?
28 days I think. Something like that.
Thanks
It’s been a miracle drug for me. Very happy with it snd although just had a pacemaker I am still on it.
I was concerned so had a very deep discussion with my EP and he was very reassuring with keep taking flecainide.
I’ve been on 50 x twice a day since 2018 blood tests once a year and touch wood 🤞no side effects
All the best
Thank you Tapanac, that's so reassuring.
When I was prescribed flecainide I was given an echocardiogram first to check for structural damage to my heart. I didn’t have any immediate follow up once I started taking it and had no issues. Hope you have the same result.
Thank you Daisy. I hope so too.
Morning.
I had an ecg and echo - both were normal - was started on Flecanide 100mg pill in pocket. + Edoxaban
The stress of my husband being very ill with pneumonia caused an increase in my AFib so on advice of Arrhythmia nurse changed to Flecanide 50mg bd and Bisopralol 2.5mg daily with excellent effect.
I’ve had a 6 monthly review at the hospital but no specific monitoring.
Thank you. Dosage similar to mine and I'm on Edoxaban too. I hope I have excellent outcome. All these comments making me much more confident.
I was given it in hospital, without bisoprolol. A week later I was rushed in, to another hospital, who said I had now develop AFlutter as a beta blocker ( ie bisoprolol) should be taken alongside.They are obviously happy with your heart structure, as it is important for being suitable for Flecanide )
It has worked well for me xx
Thanks Wilsond. Sorry to hear you had that fright at the start but good to know it's working well for you now. Fingers crossed it works for me too.
Good luck,I think I'd wait until tomorrow as you say,so you can advise your GP surgery to be on safe side. Fingers crossed yes!
started as Pip then regular- all out of hospital
I wasn’t monitored when I started taking Flecainide. Fortunately no side effects and now been on it two or three years.
Thank you, all these comments are making me more confident about taking it with no problems.
I was put on Flecainide by cardiologist and that was it! No checks, no follow up. It worked wonders for years until break throughs necessitated pace and ablate!
If I get a few years of flecainide working I'll be highly delighted. Thank you
I was prescribed it this year after diagnosis. GP never followed up but I never had any issues either nor side effects. Stopped it before catheter ablation 9 weeks ago and only keeping it as a PIP so I think you will have to be proactive yourself if you want monitoring with the NHS issues now!
Yes, you're probably right. I'll make that phone call to surgery tomorrow but if they think there's no need for monitoring I'll accept that. Good to hear it worked for you.
I had the echo stress test and found no issues and was given 100mg of Flec morning and night along with BB which I took about 15mins before the Flec. About a month later I was cardioverted then they reduced my dose to 50mg for another month then stopped altogether as I was still in sinus. I now remain on very small dose of the BB. I think if your heart is structurally sound then Flec is ok to take. Apparently it can cause some Atrial Flutter in some people.
Thanks OzJames. I'll try and get appointment with GP tomorrow to find out exactly what stress test results were. I guess if the hospital has said it's OK to go ahead with flecainide there must be no serious problems but Id like to know exactly what the report said.
I started on it 18 years ago 50mg twice a day. Specialist visits at that time were 6 monthly. Dose increased over next 2 years to 150mg twice a day, with yearly appointments. Result, no side effects and almost total disappearance of AF, down to 1 or 2 ten minute episodes a year.I wasn't prescribed a beta blocker or calcium channel blocker as I also have long-term asthma. After 12-13 years I was found to be in persistent, now permanent AF.
Yours is such a positive story Thomas. Almost complete disappearance of AF and no side effects - without a beta blocker too. My episodes have been up to 50 hours each time lately so any improvement on that would be great.
Hi, I had a heart attack (NSTEMI type II) - 4.5 years and that was my introduction to Afib (paroxysmal); the eventual conclusion was the untreated and undiagnosed arrhythmia caused a small transient clot that entered my heart.
Initial treatment (Jun 19) was daily Flecainide 50mg (am) and 100 mg (pm) along with 2.5mg Bisoprolol and a Edoxaban/Clopidogrel dual therapy.
The Flecainide has been fantastic for me, no side effects. I had one AF episode (Jul 20), which spontaneously synced to NSR. Since then I am 3+ years ‘Afib free’. From my initial prescription, I was not specifically monitored though I had ECGs and an Echoe prior to this. The echocardiogram, for example, confirmed my heart was structurally normal.
The daily Bisoprolol has been discontinued. I am pretty fit and have a low resting heart rate; it just dropped off an edge with the beta blocker; tiredness and lethargy.
The Edoxaban was dropped too. Initially a precaution but as I am under the threshold for anticoagulants, it was removed.
I do have an ‘emergency PiP’ option too. Should I have an episode, I can try an extra 100 mg of Flecainide and 2.5 mg of Bisoprolol. My Afib is usually with RVR, so the beta blocker is there to protect them. The idea is this PiP will help ‘knock’ my heart back into NSR before I have to present at A&E. I am pleased to say, so far, I have never had to try it.
My annual review has been cancelled, now scheduled next year. The topics up for consultation are moving from daily Flecainide to PiP only and removal of the anti platelet.
For me, Flecainide has been a wonderful solution. I have had no ill affects that I’m aware of and have been very stable. I must admit I will go into the next conversation about removing it with some trepidation; I rather like the status quo. Despite what has happened to me, I don’t feel I have any limitations; well, bar the ageing process in general 😀
Being concerned about your position is understandable. As you can see from this forum, everyone’s experience is different and one approach/solution doesn’t fit everyone. I would just say, work with your doctor or cardiologist to find the right one for you.
Male - 57, Lancashire, UK.
Thank you. That's all really interesting and encouraging. I hope it works for me as it obviously does for you..
No monitoring, no side effects 🙂
Thank you, hope I'm as lucky with no side effects .
Hi Liz. I saw cardiologist Feb 2020 five months after I was diagnosed with Paroxysmal AF September 2019. He prescribed 50mg of flecainide as a PIP but no trial in hospital. I was given 60 and I've taken about 25 of them after trying other methods to get back to nsr other ways. I needed hardly any in first two years but slight increase this last year. I'm going to ask my gp if I can see a cardiologist if I don't have to wait too long. I understand that my gp can't prescribe flecainide but may be mistaken. In case you didn't know: PIP is pill in pocket
I've asked in the past why I couldn't have flecainide as a PIP but told it wasn't suitable. Now it's been prescribed to be taken daily.
That seems daft doesn't it?
Are you kidding? That doesn’t seem to be how the NHS works these days. Patients, with limited or no medical training, are expected to monitor their own symptoms and side effects these days.
I had NO monitoring despite all the websites and even NICE saying the first dose should only be administered in the presence of a doctor - and also the Digoxin they prescribed for me over the phone! And also the Metoporol and Atenolol and Amiodarone they prescribed me remotely. When I raised the issue of living alone and nobody being there to see me hit the floor if it all went horribly wrong, the nurse said SHE didn’t think it was a problem and just to call back any time in the next twelve months if I had any concerns. She would not discuss any possible side effects to snatch out for either because she “didn’t want to put ideas into my head”. 🤷♀️.
It’s frightening what they prescribe these days with little or no monitoring. xx
Tried to get an appointment to see or speak to GP today. Nothing doing. They can't discuss medication until they've had notification from the hospital which can take up to two weeks.I've asked surgery pharmacist to give me a ring today.
I found that when I was put over to the hospital cardiology dept my GP wouldn’t treat my AF at all. He just kept saying I had to speak to cardiology. 🤷♀️
I wondered if that would be the case. Sounds like you’ve had terrible experiences and had to go it alone.
Have to admit it’s been a pretty rough, lonesome ride. And had to contend with lack of proper care and attention before that when my back went in Jan 2021. After six months of shenanigans with the GPs I ended up paying privately for an MRI and to see a spine consultant to get the right diagnosis and then be put on the waiting list for the required surgery. And no, the pain wasn’t all in my head. 😟 I finally had the surgery in March 2023. That was was a two-year journey of pain and financial ruin that I wouldn’t wish on anyone. So if I sound a tad ‘disappointed’ with GPs and the NHS I wonder why, eh?
So sorry to read about your experience. I hope you start to feel much better soon.
I’m very well now thanks. Both the back operation (fusion) and the ablation have been a great success. When the NHS works, it works very well, and the staff and docs are amazing. It’s just the waiting times that are the killer.
Onwards and upwards now!! xx
Thank goodness, some positive news. A & E were really good on Saturday.
Efficient and so kind & understanding.
In and out in about 2.5 hours.
Hi LizLancashire,
I had an echo and an ECG and was given flec as a PIP and told to take 300 mg by a cardiologist, in one go 😳 I did ask if I need to be monitored but he said it wasn’t needed. I was never checked afterwards. I’m on 1.25 mg Bisoprolol daily, only.
I’ve only ever taken that amount once and I lived to tell the tale, but another EP since has told me to take just 100 mg as a PIP, so I do have my doubts as to whether he was right or not to prescribe such a hefty dose…
As you had those checks in A&E you should be ok. It does seem to be different, wherever you are based though, it seems.
Thanks Teresa, 300 mg sounds frightening but you survived 🙂I should be ok with 50 mg but I agree, advice seems to be different wherever you're based.
I took an extra 200mg as a PIP one night in sheer desperation and experienced the most dreadful episode of double vision. That, and the severe dehydration and constipation it was causing, made my cardiologist tell me to stop taking it immediately. The Flec had no effect on the raging AF anyway and the side effects took weeks to subside. Then they tried me on Amiodarone and that was even worse! The side effects of that filthy muck have taken even longer to subside. In fact I suspect it’s permanently wrecked my tear glands and the night time dry eyes are chronic now.
I’m delighted to say the ablation I had back in June has been a huge success and I’m off all meds now.
I must admit ( and I didn’t like to say) I did get intermittent chest discomfort/tightness (not pain as such) for a few days after I took 300 mg for the first time. I took it with a beta blocker. I can’t say it was the large dose of flec that definitely did that, but it was a coincidence and I’ve never had the discomfort again. I would be much more comfortable with the 100 mg as a PIP if I need to take it in the future and glad the EP suggested that would be better ( she looked a bit shocked that I was asked to take 300).
How are you getting on, Liz? I've been in crisis for three weeks due to some of the issues under discussion on your thread.
Should I have taken my 4-year-old prescription for flecainide as a PIP for the first time ever, with no supervision, when I have not had a cardiology check-up for nearly 4yrs due to the pandemic, so I have no idea whether I've sustained any structural damage in that time? (Especially since finally catching Covid for the first time in May this year.)
That was a rhetorical question. I think the answer is 'no'.
I had never taken the flecainide previously because my AF had never lasted longer than 24hrs and had been infrequent until very recently, as far as I know. (Several people expressed disbelief that I didn't know whether I was in AF or not, but I have been in near-asymptomatic 'slow fib' with a normal heart rate, and I didn't own a Kardia until now because it was such an infrequent problem. That has now changed. Daily monitoring shows that I have been in AF for nearly three weeks, and it may be even longer.)
The leaflet in the flecainide packet lists two reasons why I should NOT take it now.
No one -- 111, pharmacist, GP, A&E or the otherwise helpful AF association -- could tell me whether to take the flecainide or not. This suggests that there are good reasons NOT to take it without seeing a cardiologist (or EP).
I asked for a cardiology check-up back in June, after recovering from Covid, and was given a phone appointment in mid-January.
After all this kicked off nearly three weeks ago, my GP requested an urgent referral for me. The cardiology department at a large hospital nearby (which I prefer to my small local hospital, which does not have a good reputation) was supposed to phone back and discuss my current symptoms and, I assumed, starting anticoagulants.
That was 16 days ago. I haven't heard anything and am still in uncontrolled arrhythmia, keeping my heart rate down with metoprolol twice a day. My GP has phoned three times to check up on me, to ask me to go in for a BP check and bloodwork (cholesterol/blood sugar, which nobody has checked for 4+ years) and, today, to ask if I've heard anything from cardiology. Our request for urgency seems to have been fobbed off.
I cannot wait until January, even though most of the time I'm keeping my heart rate under 80. I am looking for an EP to go private.
I don't blame the NHS for this. Every NHS employee I've encountered is trying valiantly to do their job in nearly impossible circumstances. The situation I am in -- along with the millions on waiting lists -- is the result of political choices, not lackadaisical doctors.
Hi RedatriceI'm sorry to say my situation is somewhat similar to yours. I phoned the surgery 16 days ago but the receptionist wouldn't give me a face to face or a telephone appointment with a GP because she said it wasn't urgent. She did offer me an appointment on 9th October - wish I'd taken it now. I asked to speak to surgery pharmacist who agreed I should hold off taking flecainide until she'd spoken to a GP. Pharmacist rang back and said GP agreed I shouldn't take it without being monitored and she would refer me to Community Cardiology Unit. I'm still waiting to hear from them.
Liz, I'm sorry to hear that, but not surprised. I knew I would not be the only one unable to get an urgent cardiology appt, although my GP has been more responsive and sympathetic than yours. I'm glad you got a clear answer from the pharmacist even though it's no immediate help. I hope you are managing to sleep and that you are not having to keep up with a normal workload on top of all this. I also live alone and, for the first time ever, I have begun to worry about coping when I am older and less fit. Take care and very best of luck. I hope your phone rings today with the call you need.
Thanks so much for your kind words. I am older and less fit due to a bad car accident two years ago. I hope you get a phone call very soon. Maybe we'll both have better news soon.
Hi Liz, have you finally been seen? I hope so! I ended up going private -- the same cardiologist I was scheduled to see in January, but I could not wait that long. He's also an electrophysiologist, which I hadn't known. I saw him last week and we agreed that the way forward is drugs (flecainide + metoprolol + rivaroxaban) until we're sure I'm clot-free and I either spontaneously cardiovert or go for cardioversion. I'm still in AF after six days of flecainide, so it looks like it will be cardioversion. The drugs make me feel breathless, heavy and slow -- dragging my feet as I do my shopping, etc.; no stamina for gardening (not that the weather has lent itself to being outdoors) -- so I hope they'll be short term, but meanwhile I'm stable and less afraid of what could go wrong. I'm sleeping much better, which helps with everything. Also, I think I'm in very good hands with this cardiologist/EP; I believe we will have a good working relationship. That wasn't true of the one I was seeing 10 yrs ago.
I hope you've been able to get what you need.
The private hospital where I saw the cardio was another world. The difference between it and the NHS was shocking.
So pleased to read you decided to go privately to see your EP. You sound much more positive now.After waiting 4 weeks to hear from Community Cardiac Unit I had a phone call from the pharmacist at the surgery again to say another GP at the practice had decided I didn't need to be monitored and to go ahead and take it at home .
I still haven't due to reaction to covid booster but will do fairly soon . I've got a neighbour on standby to check up on me after I take it.
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