My history is that I was first diagnosed with AF in A & E in the early hours of the morning in November 2021 after a very hot curry and half a bottle of wine. I was prescribed anti coagulants and beta blockers. I had a brief reoccurrence in March 2022 but I went back into NSR as soon as they called my name out in A & E - although I was still getting strong ectopics so they doubled my dose of sotalol (having already been changed from Bisoprolol) Some weeks later the doctors decided that the sotalol was making my blood pressure too low and halved the dose and then took me off it totally saying it was causing more harm than good so then I was only taking the anticoagulants. I then had another AF episode in January this year where my heart rate was between 150 to 170. I was given a cardioversion and prescribed tildiem. I asked my GP if I could have a PIP in case it happened again so he emailed a consultant for advice who has put me on 100mg of flecainide twice a day. Does anyone with experience of taking it think that is a bit too much too soon? I did have another short burst of AF this afternoon but it only lasted about 5 minutes, heart rate about 120 and then it stayed in the 90s but NSR for about half an hour.
Starting on Flecainide: My history is... - Atrial Fibrillati...
Starting on Flecainide
I have to be honest ..... I'm tempted to think you were in the hands of an fairly inexperienced team ! I was admitted to an A&E Dept around 9 hours following an onset that appeared more like 'flu than a cardiac issue.
The flu symptoms were disguising AF!
In that 9 hours the correct diagnosis had been made and treatment started ! My HR on admission was clocked at 156.
BTW, I didn't have flu at all, just paroxysmal AF!
John
What treatment are you on John?
Prior to this event I was on Ramipril (10mg) and Statins (40mg).
After AF mugged me my party bag was increased to include Felodopine (2.5mg), Bisoprolol 5 mg and Warfarin (dose varies day to day).
I am still today ( 13 years on) on the same stuff added to which I am dieting as I found my AF could be triggered by food and ingredients.
So, basically, today its a combo of diet and meds.
John
I cannot advise on the correct drug regime but on reading your post it looks like you've had 3 episodes in about 2 years. Have you had a consultation with a cardiologist or were the decisions about Sotalol etc made at A&E?
Have you asked why you weren't considered for PIP treatment and why the cardiologist recommended 100 x 2 daily?
I know these are rough times for consultant appointments in the NHS but I would have expected to have a consultation with the cardiologist before a moderate dose of Flecainide was prescribed. Perhaps have a talk with your GP about your concerns. Best wishes.
PS Forgot to say that I am taking 100 x 2 Flecainide since 2014 and so far, it has stopped my frequent AF.
Hi Finvola. I paid for a consultation with a cardiologist and an echo in December 2021 as we were going on a long awaited (because of covid) holiday in January 9 and didn't want to invalidate the insurance by having outstanding investigations. The decision about meds was made at A & E and the consultant didn't change it. My echo was fine except for a slightly leaky valve which I am told is common for a woman in her mid 60's. All other decisions have been made by the GP, except for the flecainide where the GP wrote to a consultant for advice. I have a phone call booked for next Tuesday to discuss what the consultant said in his reply but when I had a short episode this afternoon I phoned the GP. The receptionist spoke to the doctor who told her to tell me (yes I know!) to go to the chemist and pick up a prescription for Flecainide and take 100mg twice a day and he will speak to me next Tuesday. I think i am going to phone again in the morning to try and speak to a GP.
Goodness that is cavalier! You need some proper joined up thinking here. I do wish A and E wouldn't just shove pills at us and leave us to it! This happened to me 3 years ago and I was simply 'left'. Then th pandemic hit. It's good you've seen a cardiologist off your own bat but it sounds like an appointment with an EP would be your next step. You're on Tildiem now, which is a form of Diltiazem- a calcium channel blocker. It does partner well with Flecainide so I expect that's why your cardiologist has suggested it. I was on the combination myself for 3 years. Am now post ablation and off the Flecainide altogether. You can use Flecainide as a PiP but would.need advising on that. Sometimes however a low maintenance dose is better.Flecainide is an anti arrhythmic whereas Diltiazem is a rate controller and also.a.vasodilator which helps your BP. It's the different jobs they do thatbis thought to make them complementary.
Truth is, it's not exact science and you'll have to find what works for you.
It's good that you have seen a cardiologist and had an echo - well done for taking control of the issue early - shouldn't be necessary but many of us have taken a similar route. What I think is needed now is a well-explained treatment plan, preferably under the guidance of a cardiologist or an EP.
I saw an EP privately and was able to transfer to his NHS list after the initial consultation - that might be an option for you. The EP in my case said that I needed 100 x 2 Flecainide 'in the interests of clinical effectiveness' which I took to mean that the low dose wouldn't stop the episodes.
Perhaps make a note of your points to discuss with your GP - your Flecainide dose may be necessary as a starting point but I would ask why the cardiologist feels that a PIP is not suitable for you.
Best wishes with your GP - let us know how things go for you.
There is some research that finds having an ablation before it becomes persistent may increase chances of being "cured".
As to your dosage, I cannot speak to that since I was never put on anything other than diltiazem and amiordarone for about a year after my first ablation.
If you can get an appointment an EP, I'd highly recommend you do that so you're getting the best advice from a specialist in this disorder - both medication-wise and long-term management.
I have only had two episodes of AF two years apart the last on New Year’s Day . I went into hospital pronto as wasn’t anti coagulated . I came out on Edoxaban , and 50mg Flecainide as a PIP with instructions to come to hospital if it hadn’t reverted to NSR in 24 hours. I said no thank you very much to the beta blocker . I react very badly to them and why am I going to take a drug every day that makes me feel awful unless the episodes become more frequent ? The EP said fair enough. The very low dose of flecainide may not do anything but personally I would rather try a low dose and see how I react and maybe increase it, than be put on a high dose and risk there being any drama . I haven’t had occasion to try it as yet so can’t comment
I have had only 3 protracted episodes of AF since 2011. 2 within the first month.of diagnosis. On all occasions it took a while, after an armful of drugs including amiodarone iv ( no effect) digoxin,(ditto) for me to revert to normal rhythm spintaneously few hours later. My only cardioversion lasted a month.After my second episode with a rate of over 170/180 at times I was given flecainide 50mg twice a day for 2 weeks then 100mg ditto.
I have stayed on flecainide ever since, that was 2011.
I do have ectopics and runs of regular higher pulse rate ( about 130+) but cardiologist has discharged me for now. (I'm heading for 79) and my quality of life is good on the whole.
Hi, I was diagnosed via my Apple Watch back in August 2022, consultant carried out various tests and prescribed bisoprolol, Flecainide and after a further consultation apixaban , I take 100 mg Flecainide twice a day , the second consultant suggested I could reduce or stop the Flecainide however I’d been on it for a few months with no problems/ side effects so I’m maintaining the same dosage. I would not have known I was in AF if it wasn’t for the watch and to date I’ve not noticed any symptoms.
Did you go straight on to that dosage or did you build up to it?
yes straight on the Flecainide dose, it was the second consultant that recommended the apixaban as the risk due to the AF going unnoticed and the potential for a stroke, so I took his advice .
At age 60 and a month of twice weekly episodes we agreed my Flecainide should be stepped up from usual entry level (100mgs) to a medium dose 200mgs; the latter stopped the episodes and ever since (9+yrs) I have focussed on making lifestyle changes eg no hot curries or alcohol 😆. Unless you are exceptionally lucky I would always bypass your GP and pay for an annual review with a trusted cardio.
Your GP will know from your specialist's report the state of your heart and whether you are safe suffering a period of sustained high rate or not. If you are, then a beta-blocker or similar is the usual way to go to bring the rate down as and when needed. That's what I do as I can't take sotalol or flecainide. Luckily my heart seems - except on one occasion - to peak at about 130bpm these days. 150+ is hard going, for sure.
Steve
I can't tolerate beta blockers either so I am on a calcium channel blocker.
Hi Sandy, when I wrote "or similar", I meant Ca++ blockers.
I hope you get sorted. I take only bisoprolol (up to 5mg) as "pill in pocket" although it takes a good few hours to work. Like you, my AF is unusual, although I get a lot of ectopics and mild racing. I'm guessing your first bout might possibly have been set off not by what you ate, but by simple bloating from eating and sitting down, maybe leaning forwards. This can put direct pressure on the base of the heart and set of ectopic beats or mild tachycardia, a combination that can spark AF in prone individuals.
Steve
Can I ask what you would call mild tachycardia. I do get this from time to time going up to say 120 bpm but gradually coming down and sitting in the 80's for about half an hour before returning to my normal 60's/low 70's. I too get quite a few ectopics.
You sound like me - my resting heart rate can be quite slow, often 60s but even 50 or so. Since my ablation for atrial flutter (AFl) in 2019, I began to notice that I also got increases in heart rate without apparent cause; I've also developed occasional AF. Of course, I might well have had these things before the flutter episode, but I always put them down to anxiety or to my hiatus hernia, never thinking about AFl or AF.
A common time for this to develop is over breakfast, when my heartbeat sometimes feels stronger (i.e. palpitations and ectopic beats occurring) but also will be a bit too fast (often 85-90bpm, but up to 120). This doesn't register as AF on my Kardia or Watch, but isn't normal (in my books anyway). It can also occur during a walk or similar when the rate would be higher, but feels to be higher than normal (maybe 135bpm). Occasionally, this has sparked off AF. I can also get a mild chest discomfort from it.
I did ask the cardiologist I see occasionally and he said it wasn't unusual and isn't a concern. I do also have a kind of heart block called LBBB, and was also once told I wasn't suitable for flecanide or sotalol, but without explanation (I should have asked!); well, all I can think is that I might have a slightly long QT interval (which contra-indiucates the use of those two drugs). I've read that this can cause palpitations in response to certain things like exercise or even confrontations.
It's all very weird.
Steve
What's the difference between atrial fibrillation and atrial flutter - does it feel different?
I gather you can’t feel either - it’s the pulse (from the valves, i.e. from the bottom rather than the top of the heart) and other effects that are able to be felt when it is racing and with palpitations.
AFl is when the right atrium is beating too quickly (300bpm); AF is when the left atrium is twitching crazily. Far fewer people have flutter but it’s said to be similar overall.
Steve
Just to clarify - since I asked the same question of my cardiac device doc yesterday - Afib is when the atria has wild, unorganized electrical impulses all over. Aflutter is when the electrical impulse goes in an organized, defined circle and can't get out of that cycle. Afib is supposedly not as "bad" as Aflutter and AFib is much more common.
not a medic of course, but it seems as if you haven’t had many attacks snd I am surprised that you were started on 100 twice a day.
I am on flecainide 50 twice a day snd that seems sufficient - for me anyway
Hope all ok
I was originally prescribed flecainide (I think 100mg a day) years ago not long after I was first diagnosed by the hospital team. After some months and no more episodes I spoke to my very helpful GP and he agreed that even 100mg a day was too much and I could try flecainide as a PiP. And that is what I have done ever since, last year I had one episode stopped in its tracks by 200mg flecainide and 1.25mg bisoprolol. My GP did say if my episodes became more frequent we would have to look at going back onto a daily dose again, but that has never happened.
Sandych55 - let me preface this by saying that I'm not a doctor but that never stopped me from voicing an opinion! 😀
Based on the information you've given, particularly how few episodes you've had, it would make sense (to me) for you to go next to a PiP regime of Flecainide and a beta blocker. And yes, from reading on here it seems that the starting dose for a daily Flecainide seems to be 50mgs twice a day. But that's of course without a full picture of your specific health 'picture' and requirements. I've had a number of episodes over the past 18 months - usually a few months apart - and I take 200mgs of Flecainide as PiP and, luckily for me, so far that has stopped an episode usually within 30 minutes. My HR generally doesn't go super high and comes down quite quickly so I might take a low dose Propranalol (beta blocker) or nothing, depending on how I'm feeling.
If I were you I'd be wanting to discuss this with the cardio dept. that prescriped you the Flec.
I've just had a long chat with my doctor (different to the one who prescribed) he said the original doctor didn't read the reply from the cardiologist properly who gave me the choice between a PIP or taking flec 50-100mg twice a day. I have opted for the PIP with the option to change if Afib becomes more frequent. Fingers crossed it's the right decision!
Well done for finding a path through the ominous world where GPs don't read your notes properly, and for correctly identifying a dangerous carelessness in your treatment. Your intuition has served you well. Good luck going forward.
Thank you - if it hadn't been for the wonderful people on this forum I would have had no idea about my treatment.
You asked for pill in a pocket! Isnt this what Flecanide is used for?
Yes, sorry if I confused. I am using it as a PIP rather than taking a daily dose.
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