I have had paroxysmal AF for 10 years. When it happens I never know what to do, especially as I live alone. If it goes on for more than about 12 hours I seek help from 111, they send the paramedics who do an ECG and confirm the problem, but by the time I get to A&E it stops! I have asked for advice on what to do and am just told to ring 999 if it does not stop. I would love to have something I could take, but they tell me that flecainide (which my doctor husband used to take) is no longer used and just to take a beta blocker and see if it helps.
I am anti-coagulated.
Any thoughts?
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Singingforever
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As you probably know, most of us are not medically trained therefore we are unable to advise on medication as such but I think it’s ok to share our thoughts. Flecainide is frequently still used as an effective PiP medication but it is not suitable for everyone so it has to be prescribed by a cardiologist/EP and as far as I know, cannot be prescribed by a GP without a specialists authority. Beta blockers such as Bisoprolol can be prescribed by GP’s and they often help when used as a PiP but I don’t think they are as effective as rhythm control drug such as Flecainide. If it’s something you feel you want to pursue then I believe you need a referral to see at least a cardiologist but preferably an Electrophysiologist, a cardiologist who specialises in arrhythmias. I hope this helps……..
"They" are misinformed. Flecainide is still widely used as a pill in pocket (PIP). I use it myself like that. I would seek another doctor better versed and when it comes to Flecainide, that would be an electrophysiologist (ep). That said, Flecainide does require a structurally sound heart and the ep will be able to tell if you qualify. If you don't, there are other PIP drugs out there.
Personally I would find alternative medical advice from a specialist.
Flecainide can only be prescribed by a specialist in secondary care so if by ‘they’ you mean your GP or A&E - correct, unless they have relevant training, experience and competence in prescribing and monitoring for arrythmias ‘they’ will be unable to prescribe - but a specialist could - if you are assessed as a suitable candidate.
Here in the US you are usually required to see a cardiologist first who will refer you once he has baseline understanding of what’s going on. The EP will then get everything on you and work out a plan so as to be able to act fast to give you quality of life. Best of luck if you can go straight to an EP by all means, take it, but they are so bogged down because they are the ones doing the big procedures at least again here in the US and because it is such a specialty there are less of them.
Flecainide is used, so that seems odd to be told that. I was told I can't use it as my heart timings aren't suited to it - maybe that applies to you, too? Instead, I use a small dose of bisoprolol. That is less effective, I gather, as it is slow to act (about an hour or more), but it works well enough for me as I don't get too much trouble with AF, mostly rI get mild acing and palpitations.
flecainide here is used mainly for things like SVT, and other serious heart rhythms it is not for everyone and can cause serious effects. That is probably why they are so strict.
Really need to be referred to an EP or at least a Cardio.It is not suitable for some but many people take it,myself included. As a PIP then I went on maintainance dose.
If you get resistance from your GP for referral,I would insist on it.
Another option if possible is to self refer to a private EP or Cardio. Most also work in the NHS and can transfer you to their lists.
Around 170 to 200 pounds for consultation.
This is not good enough to be left without rythym control of some kind.
I was prescribed flecainide to take daily about seven years ago, but that was by the hospital cardiac department. A couple of years later I spoke to my GP about taking it as a PiP as my episodes were so infrequent and he was totally in agreement, and that is what I have done ever since. My episodes stop completely within 1-2 hours when I do take it, it has been most effective. I think you need to be referred to an EP who can find out exactly what is going on and if you are a suitable candidate for flecainide or some other drug. Certainly having to dial 999 and eventually go to A&E every time you have an episode isn't a satisfactory state of affairs for you.
HI Singingforever (lovely name), I am another one with paroxysmal atrial fib who has been taking flecainide Pill-in-Pocket (150 mg) for 3-4 yrs, and it works great within 1-4 hrs. I am also on 25 mg metoprolol twice/day (a beta-blocker similar to bisoprolol) which keeps my heart rate calmer and prevents AF episodes. This combination works well. (If you are on flec daily, it is advised to take a beta blocker also, to prevent certain other arrhythmias. But I'm on a beta blocker simply to prevent as many AF episodes as possible.) Curious why any dr. would say "flec isn't used anymore" because 1000's of people are on it, successfully. Blessings, Diane S.
Prompt private appointment with cardiologist if funds allow to discuss firstly if you can start taking a daily dose of Flecainide and if so what would be the best amount.
Basis of this suggestion:
I got PAF 10 yrs ago, 100mgs Flec didn't stop it, so I went back to a trusted cardiologist and agreed we would try 200mgs (a medium dose) of Flec. I didn't want daily, asked for PIP but he persuaded me that the heart didn't like the 'roller coaster' of PIP and the important goal was to calm it albeit under the influence of Flec. Virtually AF free for 10 yrs, just 2 very brief episodes.
I have vagal, lone, paroxysmal AF. I finally tried Flecainide 50mg morning and night and it has taken 95% of all symptoms away. See an electrophysiologist, get an echocardiogram and try Flecainide if you are a candidate. It's been a life saver for me so far!
I'm in Canada and my PIP is propafenone (Rhythmol). I have it with me all the time. I have only minutes to find a place to recline or lie down because of my shortness of breath and I have to take it stat. But because I've been at home and I can treat myself I haven't needed to call emergency services. My cardiologist has given me specific instructions as to when and how much to take. Two stat and one an hour later. It normally takes me at least two hours to convert. And I would much rather do that at home!
The next recommendation for me is that I go on daily rhythm control with a beta blocker but I'm doing my best to avoid that.
Many thanks to everyone for their very helpful replies. I have managed to get a phone appointment with my GP for Friday and will discuss the way forward in the light of your kind advice.
I am in the U.S. and also take Flecainide (100 mg) as a PIP, but my instructions say “take one tablet by mouth every six to eight hours as needed for atrial fibrillation that lays more than 2-3 hours). Sometimes I take a second dose after being in aFib 8 hours. However, usually one dose works after about 4-6 hours. Still, I prefer that to taking it full time. I also take metoprolol tartrate (25 mg) twice a day and have a pacemaker. I agree with everyone else that you need to see an EP.
I am on a Metropolol succrate XL I was taken off my Multaq immediately after they fit my pacemaker. I am not sure how long I will be on the metropolol I know eventually I will just be on my anticoagulant. It’s only been three weeks lol
I am in the US and never given a PIP I honestly don’t see how taking one pill helps but I can’t really comment because I’ve never done it. Again, as they often say you need to reach out to your doctor. We are all so different. 12 hours. Does not sound much to me. It probably seems forever to you. I have had it much longer sometimes never stopping for months and months that is why only your doctor can really say what’s going on. With a fib things are ever-changing there is no cure as you know sometimes it can behave for years and then act ugly again.
I always took Flec as PIP. It worked every time. I couldn’t tolerate it daily. I took one 50 mg at onset and one a half hour later. My episodes were gone I. Two hours.
it would be great if we could all just do that instead of taking it all the time. Unfortunately for me, it wouldn’t have worked because they couldn’t find anything that would continue to work for me more than two weeks at a time. Once my a fib came back, it never left until the cardioversion and gave me a 3 1/2 week break. Now I have my pacemaker. Thank you for sharing.
I'm surprised you're not allowed flecainide, as that's my go to and it generally works, but then I'm in the U.S. I'm 76, and after three ablations (the third turned out to be for a whole new area), not really interested in another. When I started this journey, rapidly advancing to full-time AFib, before the first ablation (which was successful for 18 months), flecainide did nothing. Now, however, it does seem to stop it successfully...though knocks me out, too, so best at night. Wonder why they don't let you have it. It's even cheap....lots cheaper than an emergency trip!
Before my mini maze in June 22 I always used Flecainide as PIP as I couldn’t take it daily. It worked like a charm. I’m in the US though so I am guessing the Flec not being used is a UK thing.
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