Flecanide ?

[dmack4646]

Have been on fir 10 plus years 2x50mg and has worked very well indeed , always aware that one day even a larger dose won’t work. But, I have found the opposite problem , I was getting v breathless and low pulse , had Echo, Ecg’s etc - no problem found - in desperation to feel normal cut Flec to one a day - low pulse and breathlessness gone - has anyone else ever found the Flecaniade began to have a greater effect after a long period on it ?

[Hidden]

No but it's an interesting question, I'm on 100mg AM and 50 PM whuch mostly works, 10 years is a long time, how many echocardiograms did you have and did they change over time ? My first one showed slight LVH (mild), second one was normal, on both I had very minor LA enlargement (but only 1mm above normal range). Have you any co morbidity such as high BP etc ?

Andy

[dmac4646 in reply to Hidden]

Hi , lots of ECG's/ Echo , stress tests minor changes but nothing to concern. HBP since 1998 but well controlled 100mg Losartan, Have never been able to tolerate BBlocker with Flec as pulse goes to <40 - but this is really strange when I cut from 2 to 1 Flec its like night and day I feel completely different - there are 2 big ? - do I now NEED any Flec - if I do and get an AFIB attack how will I tolerate a higher dose -..... its a bit of a dilemma - as I dont want to take any chances in the current situation I will carry on with the 1.

[Bob56 in reply to dmac4646]

We would expect any medication we take to have some effect, but over time it is we who change rather than the meds we are on, and as a long time user of Flecainide, I know that over time it became less able to control my AF and eventually I had to have an ablation, which has essentially reset my heart, and made the Flecainide, which I still take, effective again in nipping occasional AF episodes in the bud. I suppose it’s possible that your heart has changed somewhat in character, and maybe the Flecainide no longer does the same job and instead its side effects have kicked in. I have no professional basis to pontificate on this and haven’t studied the side effects of Flecainide in any detail. What I do know is that the greater the dose, the worse I feel generally. I only take 50mg a day and my cardiologist describes this as a maintenance dose. I have had as much as 200mg a day in the past, but didn’t feel great and was pleased to come back down as quickly as possible. Personally, I wouldn’t change my dose on any long term basis without my doctor agreeing, but our hearts and bodies work in mysterious ways and if you have hit on something which works for you, then that’s great.

[dmac4646 in reply to Bob56]

Thanks , my cardiologist is relaxed about it saying that it may well be my heart has calmed down due to absence of episodes and that a “baby”maintenance dose my be all I need , but, it’s difficult to explain the effects drugs have long term.

[Bob56 in reply to dmac4646]

Sounds good. I’m not one of those people desperate to get off all meds, but clearly the less we need to take the better. Best of luck!

[sdweller in reply to Bob56]

Bob can I ask how long the Flec worked for you?

[Bob56 in reply to sdweller]

I would say it worked well for the best part of 20 years. I was diagnosed in my late thirties and went onto Flecainide pretty soon after. With its help, I managed my AF very well, but eventually, by my late fifties, the episodes became more frequent and longer, and I realised that however much Flecainide I was taking, my heart was reverting to NSR only when it felt like it, often a day or more, sometimes two days later. Eventually, it didn't revert at all without a Cardioversion, and it was decided an ablation was the right way to go. Since then, more than 5 years ago, I have had a few further episodes, but with Flecainide, never for more than a few hours. It has made the drug effective again, at least for now. It isn't for everyone, but I regard Flecainide as my friend. Hope that answers your question.

[sdweller in reply to Bob56]

For sure, thanks for that. Flec has been great for me this year, but I've read effectiveness can "wear off" over time so just wondering. Nice to hear it can last longer!

[cuore in reply to Bob56]

It sounds as if you were not more than three months persistent when you had your ablation. You also say you have been taking a maintenance dose of 50mg x 2 Flecainide. So my question is the reason for a daily dose of maintenance Flecainide rather than a PIP since you have had just a few further episodes? I would also be interested to know how many months persistent you were when you had your ablation.

I have recently been to my internist specialist who said the reason for an ablation is to get off drugs or why have an ablation and just remain on drugs. I felt she had limited knowledge of atrial fibrillation but I did not want to get into a discussion with her about the electrical functioning of the heart. Your case is a good example of patients still remaining on drugs even after ablation.

[Bob56 in reply to cuore]

Hi, I started discussions about having an ablation some years prior to actually having it. This was partly to see if medication could control my AF and partly as my cardiologist wanted to see the success rate on ablations continue to rise. My AF episodes did gradually increase in frequency and duration, but I never reached a persistent AF state, unless you count the last time, when after 8 days of AF I had to have a cardioversion to shock my heart back into NSR. My specialist said that it was likely medication or not, that my AF episodes might not right themselves, and more cardioversions might have to follow. It was then that we decided to go for the ablation. Its worth saying that my heart wasn't beating very fast, just irregularly, so a beta blocker like Bisoprolol wouldn't help much. It was the Flecainide that was helping me to revert to a normal rhythm, and once that stopped working, I had nowhere to go.The EP who reformed the ablation did intend me to come off all medication, but a couple of days after the procedure, I started getting frequent AF episodes, and he advised that temporarily I should go back on Flecainide and Bisprolol until my heart had settled and recovered. The attacks soon waned and I came off the medication again but after 6 months or so, I started getting short bouts ( a few hours) of AF and after a holter test which captured one of those episodes, the EP suggested I go back on the medication full time. His feeling was that it was helping me to stay AF free, and even though he wasn't against using Flecainide as a PIP, he felt it had worked well for me for so many years, why not carry on as I was, now that the ablation had restored its effectiveness. My EP likened the ablation to a reboot of the heart. It has basically turned the clock back to a time when my medication worked very well. Not perfect, but well manageable.

That was more than 5 years ago. Since then I have had about 3/4 AF episodes, ie less than 1 a year, and I just take a large dose of Flecainide on top of my usual 50mg, perhaps up to 200mg and after a couple of hours I am ok again. That sort of frequency is fine by me, and whilst it would have been nice to have no medication , I have few, if any, side effects and my health otherwise is good. I'm not in a hurry to change things, but I accept my heart might have other ideas as I get older!

I do read lots of posts where people are desperate to get off drugs, and I completely understand, but you have to do what works for you, and get the right advice from people who really know what they are doing. I have swapped cardiologists a couple of times, to find people who know a lot about AF ( and ectopics, which can be a real bind).

Sorry for the very long reply, but I felt you needed some context for where I have ended up.

[dmac4646 in reply to Bob56]

Interesting journey thanks for posting

[cuore in reply to Bob56]

Thank you so much for your lengthy reply which I re-read a few times and which is helping me evaluate the stage I am at post third ablation. At nine months I tried getting off 300 x 2 Propafenone but lasted only six days sinus. Presently, at one year and seven months I am down to 150x2 mg, and thinking again trying to stop. If I do go back into AF, which may be most likely, I will think of your case. Thank you again.

It is so great that your EP did not let persistent AF develop. Eight days is nothing in terms of persistent.

[Bob56 in reply to cuore]

Hi again,I think I'm lucky that I was able to go privately when I had my ablation, and was able to build up a relationship with a cardiologist and an EP who knew each other well, and trusted each others judgment. I was also given time to discuss all the options available, and the decision to remain on some level of medication post ablation. I'm also lucky that I haven't had any obvious side effects from Flecainide. It did become less effective before I had the ablation but, as you say, I was never really in a persistent AF state, and the ablation reset the heart enough for the Flecainide to work well again. Although I am prescribed 50mg twice a day, I'm actually operating on 50mg once a day right now, so very much a maintenance dose. I don't really feel inclined to drop it all altogether as long as it continues to work for me. Of course, I could opt for some tidying up with a second ablation but the first one, whilst successful, did change the character of my heart, and having got used to it again, I don't want to risk further alterations , for now at least.

I'm not kidding myself that as I get older I will probably face more difficult decisions,, but it's strictly one day at a time for me.

My journey with AF is going on 30 years now, so nothing much surprises me. That doesn't mean I don't get some real lows and "why me" moments, as I'm sure we all do. I wish you all the best, and hope you continue to get support from this forum as I do.

[dmac4646 in reply to Bob56]

Interesting, I haven’t had an ablation but done everything else to stop AF. , now down to 50mg a day , and stinking at that

[cuore in reply to Bob56]

Interesting that you chose 50mg Flecainide once a day on your own. Does your EP have any thoughts on that?

[Bob56 in reply to cuore]

My EP’s view was that it depended on how comfortable I was and if I felt that 50mg gave me enough protection he was ok with that. I don’t think the same would have applied if I had wanted to increase above his suggested dose.

[secondtry]

I agree stick on 1. I increasingly follow what my body tells me tempered with some caution/listening to the medics. You are on a very low dose, so any signs of trouble you have got plenty of scope to increase the dose. I have been on a 'medium dose' of 200mgs flecainide nothing else for 7 yrs and am getting increasingly better QOL, which I put down to Lifestyle changes and that might be the reason behind your decreasing need for Flec.