I asked the arrhythmia nurse, at a recent post cardioversion appointment, if I could stop or reduce my medication (Apixaban, Carvedilol and flecainide) and she said she would write to the specialist. I have had a letter today to say I can stop taking flecainide but is it safe to just stop taking it or should I reduce the dose first? I don’t see a specialist for AF, just the arrhythmia nurse who did my successful cardioversion in July.
Does anyone have any experience that could help me decide what to do. I thought about phoning the nurse but she must be snowed under and I feel bad adding more to her workload. I have a problem taking medication. It’s the first time in my 67 years that I’ve had to do it and I’m still finding it hard to deal with.
Thanks in advance.
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Wilky57
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Hi,You can ring a pharmacy, they should be able to tell you if it's ok to suddenly stop or if you need to do it gradually.
I sympathise with the way you feel about taking medication. I have the same problem - same age, never been on medication before and desperate to come off it.
Thank you so much. What a good idea. I hadn't thought of that. Do uou find it hard to accept that for the rest of your life you'll be on medication? My friends think I'm being silly but it's so depressing
That's exactly how I feel. I feel like I'm on the slippery slope. I can't believe I've gone from fit, well, healthy and full of energy to needing to take medication.
I keep saying to my GP and the cardiologist that I'm hoping to get off medication at some stage but it falls on deaf ears and I can't accept it. I'm doing all I can to look after myself in the hope that I'll reach a point where I will be medication free, and even though I know at the back of my mind that it's very unlikely I believe I'll get there. Who knows? I might just surprise everyone.
My Cardiologist took one look at my ECG and said I could come off of Flecainide as it looked like it was doing me more harm than good. I stopped it right away and the next time I saw him he said my ECG was much better. I must say that I felt a lot better without it too.
I’ve stopped it post CV and asked my cardiologist and he said the first time I could stop immediately. I was only on it for 4 weeks post CV. The second time I’d been on it for around 5 weeks before CV and a month after and he said same but I was more cautious and reduced it gradually from 50mg to 25mg for a week and then halved it again for another few days then went one a day then stopped after a few more days. Felt a little bump or two but stayed on beta blocker for another 2 weeks before reducing that the same way and stopping that too.
Most importantly you must tell your doctor your doing this
After going into AF a few times we are now trying very low dose daily Metoprolol 10mg bd which is equivalent to 1mg Bisoprolol and 20mg bd Flecainide. The Cardiologist wants me to settle and not flip into AF every couple of months. He started me higher but was ok for me to go down to see how I went. I too hate taking drugs but I must say I’ve never felt better and am approaching 9 months AF free. I walk 5km a day do reformer Pilates twice a week and ride indoor bike 10-20km twice a week. I went as low as 8mg on the metoprolol and cardiologist suggested it was a homeopathic dose 😁 I may yet reduce both as test but will wait for the 12 month mark and then discuss with Cardiologist at my appointment I also checked my bloods and now supplement magnesium vitd3 and coq10 so who knows what’s keeping me out of AF I’d like to think it’s me not the drugs but it’s probably a combo of all
Thanks for your advice. My problem is how I deal with illness and medication. I’m pretty hopeless. I feel really well at the moment. I have lost 3 and a half stone, I no longer drink alcohol, I exercise 5 times a week and I cook everything from scratch. This is a massive change for me. My cardioversion was a success which means I had AF for 5 months, to my knowledge, anyway. As I’ve said in my previous replies, I think a visit to the EP I originally saw might be the best option. He was the one that mentioned flecainide as a pill in a pocket. I only saw him once before changing to see a cardiologist much nearer. Thanks again for your help.
Yes that sounds wise have a chat with EP lifestyle and general health I’m convinced makes a difference.
After my first CV in October 2022 I stayed on meds for a month enjoying 11 months AF free and no meds then another CV in September 2023 and again another CV January 2024. The last two were caused by over eating and stress, do we get more susceptible as we age..maybe so that’s why I thought I’d try the really low dose of both drugs. I was pretty lucky as I was first diagnosed in 1993 and only had on average one episode every 5 years until 2022 and no drugs during that time.
Well done for losing the weight and changing your lifestyle so radically. Looking after yourself is so important. You are doing all the right things.
As I said in my previous replies, I also dislike suddenly needing lifelong meditation and hope to come off it at some point.
I worry about the long term side effects - one tablet causing a problem which will, over time, need another tablet. Then that causes more bother and more medication is needed. And so on, down the slippery slope.
Sometimes I think young people look at a 67year old and think I'm old, that it's normal for someone my age to be on medication. In fact, some people my own age were surprised that I wasn't on any medication before all this started.
Why on earth do you not feel like 'bothering' your assigned team? After all they are there to help you to keep well,snowed under or not if you have a concern they want to know. They are paid to help us, and want to.
We can't advise
Your consultant must have thought these meds would be useful. It surely would be wise to report back that these are not.
Thanks for your reply. I did try to explain how I felt about medication to the arrhythmia nurse but she didn’t understand my worries about what it might be doing to my body. I don’t think a second chat would make it any better really, although she is brilliant. I know it’s a risk to start reducing/stopping medication but the original EP had suggested using flecainide as a pill in a pocket, if the cardioversion was successful. I think I’m going to pay to see him again to get a better idea.
I wonder why you would want to stop a drug which reduced my AF episodes to one or two ten-minute episodes a year, for 12-13 years. I'm on medication for life. I have been for years. I'm now 79. Without asthma inhalers and short courses, when needed, of antibiotics and prednisolone, I wouldn't be here to write this. I'm asthmatic as well as having AF.
Medication is needed because parts of our bodies are not functioning as they should. It's nothing to be worried about. It's normal to take medication.
When I was found to be in persistent, though asymptomatic, AF I was advised to stop taking Flecainide. I was on 300mg a day, and was told to just stop, so I did. Nothing untoward happened.
Thanks for your reply. I have only had 2 episodes of AF but was in permanent AF when I had a successful cardioversion. I have felt great since. It seems that a reduction of medication,at least, would be a good idea. The EP I saw originally had said flecainide would be used as a pill in a pocket but I don’t see him anymore. Perhaps I should pay for one more consultation so that he could explain things a bit more.
So to sum up your situation as I see it. You are 67, female, and in your first post you admitted to being over 17 stone. You have had two episodes of AF, the second one being persistent, that is all the time for 24 hours a day for at least 7 days. You had been put on an anticoagulant, (Apixaban), a beta blocker, and Flecainide.You had a Cardioversion which was successful.
And as a result you feel you should reduce your medication.
Because you have had 2 episodes, one being persistent, you will be 5 times more likely to have a stroke. You can reduce the odds by continuing to take apixaban, the anticoagulant, for life.
The beta blocker is to reduce your heart rate.
The Flecainide to stop you going back into AF.
I took Flecainide daily, but was not prescribed a beta blocker because the van exacerbate asthma, which I also have. When after 12 to 13 years of Flecainide, I was found to be in persistent, though asymptomatic, AF, I was told to stop the Flecainide which I did, the next day.
My AF is now permanent, and has been for about 8 years. No medical intervention will return me to normal sinus rhythm. I take only an anticoagulant, warfarin being my choice, as my heart rate is within the normal range.
I can't advise you on what medication to take, as I don't know you and I am not medically qualified, but it's generally accepted that once prescribed an anticoagulant for AF, you should take it for life.
From the experience of many, including myself, you will help your health by reducing weight.
Many people have had Cardioversions. Some are successful, but AF returns in time. A few have had 6+ Cardioversions.
Once you've had AF you are likely to have it again, sooner or later.
Thanks Thomas. I will take Apixaban because obviously I don’t want a stroke. I assumed that because I had only had AF for a relatively short time I was “cured”. I also thought that a change of lifestyle would support this. I suppose I will have to take beta blockers forever now as well although I’ve never had high blood pressure. I know my problem is in my head. I just need to get it sorted. I know how lucky I have been .
A good reason why having been prescribed it, the decision has been reversed
A good reason why it is fine to go 'cold turkey' with such a strong drug, my inclination would be to run it off gently
I am afraid gone are the days when you just rely on a medic's instruction without a proper explanation and doing your own research (as you are doing here 😁)
I was prescribed flecainide for a few days before my cardioversion by the private EP I saw. For a variety of reasons I changed to a different private cardiologist who said he would follow the ep’s original advice. However, I haven’t seen him since, only the arrhythmia nurse who did the cardioversion and she said she couldn’t really advise me. The reason I want to stop or reduce medication is that I don’t know what it’s doing to my body. I haven’t needed medication in the past so this worries me. I feel very well at the moment with a lovely, regular heart beat! Thanks for your help.
When I started Flecainide I was v worried and promised myself I would wean off it after 6 months. However it worked well and my research showed it to be a comparatively old tried and tested heart drug with few problems for those with Lone PAF ie no comorbidities. So now 11 yrs on at 71yo I am still taking the same dose 200mgs (medium level) per day.
Some here have been on it for longer with the record I have read being 30+ yrs.
Who knows that is the frustrating thing about all action to deal with AF. What I can tell you is that with no obvious side effects, I still consider it as important part of my overall treatment.
Next week I get a second opinion from an EP as this year a different pattern of heart disturbance has emerged and Flecainide can be involved with a Flutter issue I understand.
Had an osteopath visit and maybe a chiropractor in the distant past but nothing recent. I believe it can help but I do weekly exercises to stay supple and hope that is sufficient. Thanks for the reminder.
You know, the flutter you mention might be the result of something simple, say, like a certain mineral/vitamin deficiency that would be easy to rectify. Also, I have begun taking D-Ribose. Many believe D-Ribose is so good that it eliminates all arrythmias. You might investigate it. It can't hurt you. Thanks.
Thanks again Pomme. I will try that as I have found now after many years I am self regulating supplements. Just this week I am adjusting my dose of magnesium compound (which include taurine) as a bigger dose than my usual was causing unusual flutter in the mornings.
A chiropractor has no training in cardiac treatment and should not suggest it. His job is manipulating the skeletal system. Doing any other medical maneuvers is malpractice.
When it was time for me to stop Flecainide, my cardiologist said just stop takin it, no need to be weened off it or anything. Although this was a good few years ago, I had no side effects from doing it.
Good question. I was at a stage with my AF that it didn't matter what I took, AF would still break through so the quote from my cardiologist was "we've poisened you enough" and this was after a few years on it. Next stage after that was my second ablation.
Looking online, flecainide should be tapered off and not stopped immediately. However, the specialist will know your heart's health and background well and is the best source of advice. Alternatively, perhaps ask your GP who might well have had a great deal of experience of other patients stopping the drug (more so even the your consultant, perhaps, since it is the GP who will be caring long term).
You can also email the clinic via the consultants secretary. This is what I do at Leicester Glenfield and I always get a reply.
Can I ask why you want to stop taking it? I was given it recently, but, because of fear over side effects, only took one tablet! Luckily, my AF, although far more frequent and long-lasting, is easier to cope with these days (fingers crossed as I write this). On my last episode, I dd think the I ought to start the flecainide.
Thanks for your help. I don’t like taking any medication and, until February, I hadn’t needed any. I had a successful cardioversion in June and feel really well. I have made lots of good lifestyle changes but I worry what the flecainide might be doing to my body. I went to a GP when I first had a problem but he said there was nothing that I could do except take medication. I got advice from this forum and discovered that I could have a cardioversion. I paid to see an EP and then a cardiologist and I had a cardioversion on the NHS. An arrhythmia nurse did the procedure and said my doctor should have referred me to her in the beginning. I don’t think he knew of this possibility as it had only been created 6 months previously. At least I got there in the end.
Yes - the vagaries of the NHS added to in my experience form the lack of time and pressure felt when we do actually get to sit in front of a doctor. Like you, I do not want to take medications, and yet I find I am taking far more than I ever thought I would each morning! Oh to be young again.
I was told by my cardiologist to stop taking Flinn. I just stopped it straight away no side-effects but I did guest my taste back and I have a lot more energy now without the Flinn still taking all the others but i’m glad to see the back of it. I hated taking it from the start. do not to see the back of it.
I was put on the usual pills for afib/tachycardia (apixaban, bisoprolol snd flecainide. After many years of feeling great on this combination I got covid which really messed everything up. Then after an ablation snd eventually 4 cardioversions I did feel better and carried on with the tablets as prescribed
Then my heart rate kept going too low snd fainting and falling so was dropped on the bisoprolol to 1.25 and had to have a pacemaker
All good then for just over 7 months when I had the covid jab and then got covid itself. It messed up the pacemaker as PM was trying to compensate and all back to acrobats in my chest and not well
Back to EP who said I was in permanent afib and to stop flecainide as it was not doing any good now
The point of this long message is that despite the permanent afib I actually felt better so stopped the flecainide as advised (I weaned off it over a month), but gradually all symptoms of afib/tachycardia came back so wrote to EP and said could I start the flecainide again and he said yes.
So back to square one but do feel better with my flecainide. After reading everyone’s comments though I’m not sure whether I should try again to stop the flecainide
Awhile back I was told to stop taking Flecainide and just use it as a Pill in the Pocket. Unfortunately after being off of it for a few months, I had an outbreak, that the PIP did not stop. So am now back on, but at the lowest dose. I was told I could simply stop, but I weaned off it for a few days.
Thank you all so much for your replies. I am so grateful. I think I’m going to pay to see the original EP and hope he can help me. He was the one who said I could use Flecainide as a pill in a pocket. I also think I’m going to try to see a doctor and talk through my worries. I’m so glad I’ve found this forum. Thank you
I have stopped taking flecainide twice without tapering off and with no problems. I take 100 mg 2x a day. Both times I was hoping my afib had gone away...or that I could use it PIP.
Nothing except the afib was no longer controlled. I started having episodes again. When I got three in a month I went back on flecainide because I have very symptomatic episodes. I just hate taking medicine!
Interesting you should ask. I hadn't at the time, but I have since lost 20 pounds and have been weight lifting, so I am thinking about asking my cardiologist about trying again.
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Is there an anti arrhythmia drug which doesn't have a side effect of nausea?
Further update day 4
Flecainide & Tinnitus
