Attacks while on flecenaide

[Thomps95]

I am taking 50 mg flecenaide twice per day, and I have never had an attack since starting this medication. My excellent cardiologist suggested that I combine this rhythm control medication with rate control, even though my heart rate is currently low, averaging between 50-60. His reason is that if you do go into fibrillation while you are on flecenaide, you can sometimes get an extreme rapid pulse that is possibly dangerous. Has anyone had this experience, or heard this advice? I am reluctant to take daily beta blockers because it makes me feel lethargic, and digoxin makes me feel like I'm having a heart attack. I feel great on flecenaide alone and thus far have declined additional medication. Any thoughts?

[BobD Volunteer]

It is quite common to be on both flecainide and beta blockers. If it is working at the moment good for you.

[Hidden]

Flecainide gives me palpitations. I've tried it twice, 10 years apart with the same effect, so it doesn't suit me at all. My EP took me off it immediately and changed me to another rhythm control drug which works perfectly for me. Had to try 4 different ones to get there though.

Koll

[Thomps95 in reply to Hidden]

Thanks so much. So what you're saying is if I feel fine on flecenaide alone, it's probably ok to continue without rate control as well.

Interestingly, I do take rate control as PIP when my heart is beating fast - I probably take a quarter tablet of atenolol once a week for that purpose. From what you've said, these episodes could be caused by the flecenaide. Somehow I never put 2+2 together since they did not feel like AFib and seemed too slow to call flutter (around 95 bpm, but fast for me).

Koll, what's the rhythm control drug that works for you? It never occurred to me that the flecenaide itself may have actually contributed to my episodes of fast heart rate.

[Hidden in reply to Thomps95]

No, I'm not giving any advice on drugs. I don't think what works for me is relevant Thomps because we're all different. But just as a matter of interest the two that have worked for me are propafenone and disopyramide. I've never needed rate control, although I have been prescribed it by GP's and also a cardio once.

[Thomps95 in reply to Hidden]

Thanks Koll, yes of course I understand that you cannot give advice - I was more just interested in what all of the options are and how others are handling this situation I'm assuming that you are not taking both at the same time, like a "combination" therapy? Or are you? Again, just interested ...

[Hidden in reply to Thomps95]

I just take the one rhythm control drug. My EP tried me on 4 different ones, one at a time, before landing on the one that worked for me. The 2nd best one also worked, but had side-effects. I had to pester a bit to get the drugs changed.

[bridget54]

I was on 50mgs Flecainide twice a day for 4 years and my normal hr was 50 until I went into AF then it shot upto 150 plus. I was put on Metoprolol aswell and my hr went down to 35 and I thought I was dying! Took myself to A and E where they kept me in until I saw a cardiologist who immediately took me back off Metoprolol.

Eventually the Flecainide was increased to 100mgs twice a day which helped control the AF . Now Ive had an ablation so hope to get off this drug too.

Good luck with your decision ....bloody nuisance isnt it ?

[Thomps95 in reply to bridget54]

It sounds like your situation is in my future

[dedeottie]

Hi. I was told by my E.P. that flecanide could cause a strange rhythm if the heart rate went too high and irregular hence he put me on bisoprolol too. I did some internet research and that all seemed to agree with him so I did as I was told! X

[Craggy]

When I was first prescribed with flecainide my PAF got much worse so I was then also prescribed bisoprolol (rate control drug) and things gradually improved. I also started taking a magnesium supplement.

I still get the odd episode but intervals are improving and I feel much better. However I do get very tired in the evenings which could be caused by the bisoprolol.

When I next see my specialist in June I plan to ask him if I could reduce and eventually stop taking bisoprolol on a regular basis and just use it as a PIP.

I think if I was in your position I would probably resist a rate control drug.

[Hidden]

Thanks for this tip, looks like it's back to my cardiologist to push him..... up until now he has sworn blind there are no downsides to Flecainide.

I had been on Flec 100mg twice a day for 12 months and had an AF episode but it was minor up to my usual erratic 80 pulse from 56 and taking my Flec 4 hrs early put it back. However, that's just once and maybe I should have another drug as PIP in case the rate breaks out of the norm particularly as I am on course to reduce the Flec to 50mg x3 per day.

[Hidden]

Hi there Thomps,

The Felcaindine and Bisoprolol did the "trick" for me for about 18 months.Although I had unexplainable side affects to the meds.ie tiredness,visual problems,hearing problems and joint pains...Whether or not they were due to the meds or the AF is a difficult one to ascertain...

The crunch came when the drugs stopped "doing the trick" and my PAF was developing at an alarming rate so after a lot of research I opted for an Ablation...

The Ablation was a success and I am now "cured" of the arythmia and apart from Warfarin free of the Meds...but of course as we all know not cured of the condition and at the moment the AF is "silent"

Is an Ablation an option that you may consider Thomps? I try to keep up to date with everyone's posts the best I can but sometimes things get missed...I have only one regret that I didn't "snap up" my EP`s offer sooner rather than later...

Could do with a little of your warm climate over here as it is freezing here at the moment...

Carol....

[Thomps95 in reply to Hidden]

Certainly Carol, an ablation is something I would consider. However, I am also a bit reluctant since every cardiologist I've seen (five so far) advises against this option in my situation. Now, it does seem possible they are all rigidly adhering to the standard textbook "AFib treatment protocol" which advices starting w medication and only moving to ablation if all else fails. My main cardiologist is also convinced that techniques and expertise levels of ablation specialists are improving every month, so the longer I wait, the better: lower risks, high success rates, and more precise ablation. Still, I do feel somewhat crippled by the disease - even though I've been AFib free for the past year, there are the anxieties, the ectopics, the palpitations after big meals, etc etc. Oh it's such a bore.

[Hidden in reply to Thomps95]

Hi it's a double edge sword this one....

Whether you believe you have a good quality of life on the meds or not!

What I am trying to say is don't leave it to long before pushing for a better quality of life...It isyour life and you have a right to say how it goes...

Carol..

[Thomps95 in reply to Hidden]

Your success story is certainly an inspiration, and gives me hope that if I get an ablation it might also be successful. Quality of life - yes it's true I tippy toe around this condition. However, I played tennis today for a full hour - first time in ages and played fairly hard - it felt great. I was nervous about going into fibrillation, so took an eight of a beta blocker about an hour before the game. Immediately after the game, when my HR was still fast, I noticed a few ectopics, nothing serious, but soon my HR went down and it feels fine now. I'm hoping tomorrow it still feels okay.

[Hidden]

Can I add a hunch about dealing with cardiologists.....I would see yours again and ask (prefaced with you respect his opinion highly) how many patients he has just on Flec, how many of those have had the problem he refers to and of those how many have had a life threatening result. Alternatively, he may quote a research paper.

My hunch is the conclusion will be a very tiny percentage have dangerous episodes and probably does not include 'your type' i.e. I believe reasonably healthy and monitor/manage AF issues closely.

As you know, we don't advise here but we do help each other to accept there is risk in everything and the important constant is to approach each decision with the best information and accept consultants are human and influenced like us by one bad experience as well as wanting to keep their record free of any black marks even if it adds 2 grey marks.

e.g. My cardiologist put me on Rivaroxaban (new anti-coag) 12 months ago and after a week or so I had bleeding from the back end. I said I stopped them because I suspected it was my mild haemorrhoids and he wanted to send me for a colonoscopy as a recent patient had some bleeding and found he had cancer of the colon. I declined the invitation as I judged in my case that was not likely enough.

Please keep us informed, I am particularly interested as your record is similar to mine.

[Varina8]

Thomps and Koll discussion: there is a logic in there. Flecainid is recommended to be used with a betablocking agent like bisoprolol. A small dose I suppose. Otherwise it can be too arytmogenic ( cause new arytmias). The other rytm controlling drug, propafenone , has itself some betablocking properties, so usually no extra betablock is needed. I have been taking propafenone (Rytmonorm) 150mg x3, since oct 2014 and I'm satisfied. Take sometimes extra bisoprolol 1,25mg if I feel some atopic extras about 2-3 hours after taking propaf. I read somewhere that in the early days of these drugs there were severe rytmproblems before the right use was determined.

[cbsrbpm]

I was taking flecainide for 12 years prior to developing persistent AF. I would have episodes roughly every 4 months or so and would take an extra flecainide if an episode started but in 2014 I ended up in A & E with a really fast HR that took some time to control. I was then taken off the flecainide and put on Diltiazem but a few months later I developed persistent AF and the rest is another story. Not sure if the fast HR episode had anything to do with progressing to persistent or not or just the usual progression of AF. Could he not prescribe it as a pill in the pocket.

best wishes

Brenda

[Thomps95 in reply to cbsrbpm]

12 years - that is certainly a pretty good run on one drug. I hope you've been given treatment to control your current situation. Will you get an ablation?

[Lovedmum]

I am in the same situation as you. I was put on Flecanaide because 2.5mg of bisoprolol by itself made me really ill. Flecanaide was perfect for me for weeks with no irregularity and then my consultant said for safety reasons take 1.2mg of bisoprolol but within 3 days my heart beat was irregular and I felt dreadful again. After two weeks came off bisoprolol again and just the odd irregular heart beat now but I am worried because if the safety reasons he mentioned. i need to discuss this when I go back to the consultant. So much to worry about.

[Thomps95 in reply to Lovedmum]

Lovedmum can you let me know what your doc tells you? Somehow I didn't get the full explanation when I went back, although I told him I could not tolerate the bb or digoxin.

[Lovedmum]

Will do but I am not due to go back for a few months. He just said to take it if my heart rate goes fast.

[Crab]

Mate you and I seem to be living the same life it's been 19 months since my last attack but there are always these little niggles to remind me what I have. I am 57 and have had AF for about 10 years but only been on full time meds for about 3 years now. I am on 50mg of flecenaide twice a day and 12.5 mg of metoprolol twice a day. All the best mate we should catch up for a beer some time

Craig

[Thomps95 in reply to Crab]

Thanks Craig, sorry for the delayed response - I've been overseas. Are you in Sydney? Yes would be good to catch up - lately I've been cycling more regularly and this has settled down those niggles as you say. I'm on the lower north shore ...

[Starboard13]

I had the same problems as yourself and stopped taking them over a year ago. If I get an AF breakthrough I pop a beta blocker then but other than that I just stick to the Flec.

[Thomps95 in reply to Starboard13]

Excellent - that has been my approach. I also take a quarter beta blocker when I have a game of tennis, just in case.

[Thomps95]

I always take a small dose of beta blocker when I engage in vigorous exercise, but if I am simply walking or cycling in a non-vigorous way, then I would not take beta blockers.

Not sure if you know the answer to this, but ... I wonder hw dangerous it is to take flecenaide alone? That is, what is the risk of "sudden death" when taking flecenaide alone compared to taking flecenaide with rate control?

Something that I've found is that beta blockers cause various other heart symptoms for me - missed beats; pounding feelings; glugging sensations - but with flecenaide alone I feel 100% normal. That is partly why I am so reluctant to start taking rate control - but I also don't want to risk sudden death if that is a genuine concern??

[Stylistics70]

I take flecainide and eliquis and also atenolol and amlodipine. Sometimes I have gotten dizzy and my heart rate got really low. I get dizzy often.