Hi there guys I haven't written a post on here for a while but have kept a regular check up and replied to many posts since...my question today is I've been on 25mg flecanide twice Dailey for last 30 months or so and it's worked really well for me with no bouts of afib to report after having afib every other day before hand.. my concern is they are talking about maybe taking me off it to see how I go ..but they also have said I don't need an abaltion either , so I would be left with no treatment at all and this worries me that it leaves the door wide open for a return of af which might even be worse symptoms than before the medication started...I changed my lifestyle massively with no intense cycling or swimming anymore just easy to moderate as advised and cut out 95 % of sugar with no caffeine either..this has obviously helped a lot also I've been told but it still makes me very nervous to take no meds at all..they say I shouldn't take the flecanide long term but have read many people on here do ..so I'm kind of confused ...any experience and comments would be very welcome thanks andyb
Flecanide check up confusion - Atrial Fibrillati...
Flecanide check up confusion
I’d try it and see. You really don’t want to be on Flecainide if you don’t need to be as it can cause other arrythmias worse than AF.
I took Flec reluctantly for a while, first as a PIP so I would explore that option if you have an episode.
Some people may have been on it for years, doesn’t mean there are still no risks taking it long term. I think your team offer wise advice and as everyone reacts very differently, you won’t know how you will be until you try.
Very well done with the changes in Lifestyle - that will make a big difference I’m sure.
Thanks dreamer I know where you are coming from ..I think.its just I'm on a very low dose as my doctor says and I've not had an episode in nearly 3 years I don't want to rock the boat...but I know what you are saying and will have to go with there advice...im not on blood thinners either but I think.if I went to pip i would want them for more reassurance. ..all the best andy...
I would want to be on an anticoagulant if they are thinking of stopping the flecanide. I’ve never been on Flecanide as had a HA and the consultant said in no cure instances could I have it - finally had an ablation Dec 23 and AFib free for last 10 months so far so fingers crossed. Do you know why you’ve not been prescribed and anticoagulant and why they have said an ablation is not available to you should you choose that option?
Hi there yes I'm not on anticoagulants because my chadvasc score is 0 and I have no other commodities also my afib seems to be well under control on the flecanide , but yes that is a good point if I come off the meds shouldn't be on anticoagulant..the abalation the consultant said because on such a low dose of flec and not having any afib then he wouldn't want to rush onto an abaltion at this time..
OK yeah I can understand the thinking behind that but I’d check your options as whilst Flecanide can make a huge difference it’s a powerful drug. there’s a lot of talk about anticoagulants - I hate all drugs and wish I was drug free but the one I’m absolutely happy to take is Apixaban. I went down the ablation route as couldn’t have any rate control drugs and very symptomatic AFib every few days towards the end- AFib free over 10 months now following the ablation and literally life back for me. still on anticoagulant though and I’m glad to be as AFib can come back, can occur when asleep so you can be unaware of it or also occur without symptoms
I think your concern about not fixing something that is working is valid. 25 mg of flecainide twice a day is s low dose that arguably could be continued indefinitely.
On the other hand, I understand them wanting to do a trial off of the drug to see if you can stay in rhythm without it.
However, I would only do so with the agreement that if you're a fib returned, then you would immediately resume daily Flecainide. This would probably be my choice because I'm a minimalist with drugs.
That said, your body, your choice. Not mine and not your doctors. So if they won't work with you in a shared decision capacity best to find a different doctor.
Also not sure why ablation is completely off the table. If low-dose flec helped me, I would probably delay ablation, but again, your body, your choice. Ablation is now first treatment for those that make the choice and if your doctor doesn't buy into that, there are others that will.
Jim
Hi jim , I think they said about the abaltion is because my quality of life is good because of the flecanide and its a low dose helping that they would advise at this moment in time of having one...also there's no guarantees they would work and i do know my friend has had 5 and is now had an af episode again and back on the meds...I think I will just have to wait to see what they say all the best andy
I don't disagree with their advice at all. I'm just a firm believer in patients making their own choice and now ablation is being offered as a first line choice
Again. as long as they're going to allow you to continue with the Flec, if needed, makes sense to treat the afib that way.
Jim
Can understand your anxiety on this. The thing is to try and reduce as l don’t think they will abandon you. It’s just a trial so l would make sure l had another appointment booked with them to see how it is going. That way you are covered and hopefully you won’t be so anxious. I don’t think the medics. realise how difficult AF is sometimes and how different we all are with our reactions to drugs. The last thing you need is stress over this because that is a trigger in itself. I would explain how vulnerable you feel with no medication and see what they suggest. Good luck.
Thank you for your reply ..yes that is exactley it ...everything has been going great so didn't want to rock the boat really...but understand them wanting to see if im ok without the meds , but they've cancelled my last 3 appointments and it's been over 18 months now since I had my last check up so it doesn't seem that easy to actually get an appointment these days...thanks andy
If they want you to stop your medication l would insist on being monitored, so don’t be fobbed off and ask for an appointment then and there. Is it your GP or Cardiologist who is suggesting this?
Arrhythmia nurse has suggested it and now I have an appointment at blackpool next month she said they will talk to me about it as they don't like us staying on flecanide for ever ...
Ok. Hope it all goes well for you and that they reassure you. I would feel the same. Take care.
Given the scarcity of appointments, just make sure if you decide to go ahead off the Flecainde, that they continue your prescription so you don't run out before the next appointment in case you go back into a fib and need it. You don't wanna go into a fib and be left high and dry..
Jim
Some people don’t need the drugs all the time originally diagnosed at 35 with one episode only average every 5 years and no drugs then at 65 I’ve now had 4 AF episodes in the last 2 years so now I’m on the same as you with a small amount of Beta blocker. The ablation is something I’m considering if things don’t settle into 2025. I remember a Prof saying to me it’s a great drug for some people and I was one of them. Once you have structure issues with your heart then you can get some pro arrhythmias occurring. They are different and created by the drug. Do annual checks and make sure heart is sound
Plenty of good advice given already. In your shoes and long story short I would probably stay on 50mgs.
The alternative viewpoint:
Assuming an echo cardiogram has revealed nothing abnormal and you have no other comorbidities and you don't get complacent and relapse on the improved lifestyle choices, maybe try stopping the Flecainide as you are on such a low dose but only if you can control the resultant anxiety.
You need to accept that should you then be unlucky and get an AF episode, it is likely that you are closer than thought to the threshold (my belief is we all have a variety of individual factors which combine to threaten breaching the threshold) and therefore re-starting Flecainide at 100mgs/day may be advisable, which is still a low dose. I have been on 200mgs daily for 11 yrs!
Best wishes.
Secondary, can l just cut in here and ask you if you have had any ablations? My AF has progressed, although still paroxysmal. I am having holter monitor next week and had echo. Awaiting EP after that. I am seriously undecided where to go from here. I am coming up 77 and really don’t feel up to an ablation or possibly two…….. with what time l may have left. The only medication l have had for 6 years is warfarin and pip bisoprolol beta-blocker. I am getting AF attacks approx. every month, after nothing for 18 months. I feel there is probably other medication l could try before l put myself through surgery. What would be your opinion? Hope you don’t mind me asking. Thanks.
If echo is all good and assuming monitor does not highlight any major issues, I would be talking frankly to an experienced trusted cardiologist (private appointment best to reduce an anxious wait) about pill options eg Flecainide
I maybe quite wrong but I think most EPs will offer an ablation in most cases. I haven't had one. I was offered one 11 years ago with a 70% success quote and again this year with an 85% success quote, I am 71 with Lone PAF.
In your 70s, or for that matter younger, I don't consider an ablation 'a walk in the park'. I will know when I have to have one as my QOL will prompt that and in the meantime I will focus on maximising my health with better lifestyle choices.
Yes I know where you are coming from and I remember having af episodes every other day as they progressed until I took the 25mg flecanide then they stopped completely after about two weeks of starting the meds and everything has been fine for last 3 years nearly since then...I think I might ask about reducing the meds even further to 12.5mg x 2 a day and see how that goes before stopping completely..all the best andy
I would make sure you have a supply and perhaps reduce to one flec. per day maybe, see how that goes, then maybe stop but have some 'in stock' just in case. However having said that, if the drug works for you without side effects, carry on as you are. After ablation you would be on even more drugs probably!
Yes I will definatley be making sure I have some left in reserve if that's the route I end up taking..I thought about the reducing slowly method if they really want me to have a go with out the meds...I will be suggesting that and see what they say...
Hi Andy - I was on 50mg flecainide twice a day for about 18 months and then advised to gradually come off it over a fortnight. I was then AF free for about another 18 months. Unfortunately my AF returned and I’m now back on flecainide awaiting an ablation at Blackpool. Personally I found it worth a try going without flecainide and it was no problem getting it prescribed again when needed. Good luck!
Hi daisy , yes this is something that confuses me..I was told by my cardiologist once you have af you will have the condition for life , and its all about the different treatments to control it as best as you can...weather that be meds or abalation..so what I don't get is if everything is going fine with the meds why they would consider stopping them ,knowing fair well the af will come back at some point once left untreated ...
I think the flecainide can eventually stop working for some people. Although I take it now I still get AF every few days (this has increased from none for 3 years, then every 6 months, then every month etc). So for me the flecainide was not a long term solution, I wish it was. Anyway I hope you get some answers when you go for your appointment.
I took Flecainide daily for a year then stopped taking it and now only take 250 mg as ‘pill in pocket’. Works fine every time: stops AF within 2 to 5 hours.
Yes this is something i have to consider...my thoughts are though I'm taking it everyday I haven't had an episode for nearly 3 years...so if I stop taking it then its likely at some point I will have an episode or two , then take a tablet to try to stop it..so is it not better to stay on meds and stop them from happening in the first place ..
Just ask if you can use Flecainide as pip, I have been taking 100mg every 8 hours and it’s been a life changer for me,
Yes i have a lot of questions to ask them now...my concerns as a pip you are waiting for an episode then try to stop it with the pill...if taken every day it's a preventative before it starts measure if it works so that's what I need to think about...it seems anyone who swaps from a daily dose to a pip seems to be ok for a while but it eventually comes back at some point so I wil see what they say ..all the best andy
personally if Flecainide is working I would want to remain taking it, that’s just my preference, why try fixing something that’s broken,
25 mg x2 is a very small dose - I take 50mg in the morning and 100mg in the evening but I’m well over 80 and have only been taking it regularly for a few years.
Yes it is and because I'm.doing well.on it so far that is why I'm a little concerned at upsetting the applecart so to speak...
Hi. I think what they're suggesting is sensible. I speak as someone who was on Flecainide for 3 years ans got on well with it. Your dose is a mini dose so I can see why they want to see if you can do without it. What I was told - if you don't need it all the time, the risks (it's classed as a dangerous drug I think) outweigh the benefits. For me - even though I still get breakthrough AF episodes post ablation (I was AF free for 19 months) I've therefore chosen to have pill in the pocket with Flecainide. I'd ask about that in your case. It's a very reasonable intermin step.Well done for all the lifestyle changes too!
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