Can any help me to understand . . . - Atrial Fibrillati...

Atrial Fibrillation Support

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Can any help me to understand . . .

Finvola profile image
29 Replies

how AF progresses if it is suppressed and controlled by drugs such as Flecainide?

I've read as much as I can find on how anti-arrhythmics work on the heart muscle but what actually happens to allow the rogue signals to be conducted once again and cause arrhythmias in spite of the drugs?

Do the rogues get stronger? Does the heart muscle get used to the drugs?

Flecainide at the moment is my best friend but I feel there is a big gap in my knowledge of drug therapy and how it might (or might not) continue to work and I want to make any future decisions from a better-informed stance.

xx

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Finvola profile image
Finvola
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29 Replies
BobD profile image
BobDVolunteer

My understanding is that as there are no receptors in the body for flecainide as there are say for heroin. The drug does not lose efficacy and need larger doses until it stops working. Again I am going on what I have read or heard at conference but the heart just fibrillates more and each time it makes more rogue impulses possible. The drugs do not stop the impulses as an ablation can so they can multiply and overwhelm the actions of the drug. Usual proviso not medic etc.

Bob

atrialfib profile image
atrialfib in reply to BobD

Bob,does the same apply with the rate control med,can fibrillation overwhelm them too.or is that differant

BobD profile image
BobDVolunteer in reply to atrialfib

I think not but see above re proviso. My understanding is that since rate control drugs such as beta blockers merely slow down the heart when in AF they are not affected by any increase in fib activity but of course if activity does increase then the patient will still notice it regardless. Rate control does not try to stop fibrillation.-- just make the patient more comfortable by reducing the rate at such times. I guess as the condition progresses it may feel like the drugs are not working as symptoms may be more frequent. This may result on the doctor increasing the dose but this is not because the drug looses efficacy. Does that make sense?

Bob

atrialfib profile image
atrialfib in reply to BobD

Thanks Bob,its just that i except i have AF which means warfrin,ok i get that,but as the AF becomes more frequent as mine has,my GP has increased the betablocker,so as yet although i think i have had the AF it hasnt gone crazy,so im ok with that,what worries me is that if the betablockers didnt work in time for what ever reason,i wouldnt be able to fuction,so if i thought more AF more beta blockers i could cope,sorry for going on.

Finvola profile image
Finvola in reply to BobD

Thank you Bob - that was my suspicion, hence my investigations to try and understand it.

rosyG profile image
rosyG

I think the drugs do stop the fibrillation and delay further changes in the substrate although over time fibrillation can re-start and this must depend, (I think but am not medically qualified) on the underlying reasons why a particular individual has AF. It is the same with ablation- over time fibrillation can re-start, depending on those underlying factors and that , plus the heart healing in the ablated areas, is why re-ablation is sometimes needed.

I think you can help yourself by exercise, losing weight if needed, making sure you have enough magnesium and potassium in food and getting enough sleep- also go back to your specialist if you think drugs are not working so you can be changed to something else

Hope you do well- people on here who take Flecanide will be able to give more useful advice

Finvola profile image
Finvola in reply to rosyG

Rosy, I am interested in your comments that the drugs delay further changes and progression may be linked to the personal causes of AF. That is something I will ask my EP about at the next visit.

I adopted some health ideas from posters on here regarding diet - I walk a lot anyway - but will look at magnesium and potassium intake as well. Thank you. x

rosyG profile image
rosyG in reply to Finvola

I have heard a consultant arguing that medication should be started quickly to prevent the changes to the substrate so think this is correct! Hope you get good answers from your EP

dedeottie profile image
dedeottie

I don't u.understand it either despite a lot of effort to find out. My E.P. says that while flecanide is controlling the A.F. It is I having got it as far as my heart is concerned. I was worried that the A.F. could continue to get worse but he seemed to think not. However there is no doubt that the flecanide is less effective than it was. Interestingly, the side effects are less severe than initially too so that does suggest that the body does get used to it. Who knows?!

It is all very interesting. It would be so nice if one drug would do the trick for ever.x

BobD profile image
BobDVolunteer in reply to dedeottie

The body can't get used to it I was told by one who I trust implicitly . For a drug to loose its zing there has to be a receptor in the body it latches on to. These receptors then multiply over time needing more drug to control them and so you get a downward spiral. This is why drug addiction is such a problem. Flecainide does not work in that way so the body cant "get used to it." If it apparently fails to control the AF where previously it has it is because the AF is getting worse.

dedeottie profile image
dedeottie in reply to BobD

O.k. that explains it really well actually mores the pity! X

Finvola profile image
Finvola in reply to dedeottie

Ah, dedeottie - one drug for ever - if only. How long have you been taking Flecainide?

dedeottie profile image
dedeottie in reply to Finvola

A year. It is still doing a good job Just not quite as good as in the beginning.

Finvola profile image
Finvola in reply to dedeottie

Thank you - long may it continue to do so.

iris1205 profile image
iris1205

Hi Finvola, pertinent question indeed. Again- all of us respond differently, but I was ever so grateful for Flecainide for a time, until my AF began to increase, tried taking daily and things became much worse. I returned to pill in the pocket with success for a time. Post ablation when I was told to take it daily to keep things calm until the scaring had taken place I became much worse. Near daily episodes, and we added syncope to my condition. Whether it was the ablation or the onward progression of Flecainide behaved "proarrythmia" - a side effect of ablation or Flecainide - we will never know. The EP agreed that I might be one of those for whom Flecainide puts out the fire but leaves a bit petrol behind! I recount my experience soley as MY experience. We can't speak to each other's conditions. I am pleased that it worked for the time I needed until I had my ablations. It ceased to work at all by the third ablation. It is now working again as a pill in the pocket solution, though not for A.Flutter. Stay in touch with your doctor if conditions change. No reason to suffer! Hope you get relief soon!

PS, the same thing applied to the Metoprolol, I only took it on a PIP basis and it became less effective as well with time. Please do not take my case as typical, I seem to find myself in the 1-2% of the Afib population in many scenarios. It is important nonetheless people are aware these are circumstances which do occur and my intention is to encourage everyone to speak with their doctors until they find solutions!

Finvola profile image
Finvola in reply to iris1205

Thank you Iris for sharing your experiences. I think my difficulties in trying to understand what will/may/may not happen is that everyone's reactions and symptoms are so different. The image of putting out the fire but leaving petrol behind is classic!

I'm also so happy to have some time free of symptoms and will grab every day gratefully but am aware that it may not last.

But then, it might :)

iris1205 profile image
iris1205

I was going to add such but hate moralizing, on some days it is the last thing we want to hear! Yes, my intention these days is recognizing anything other than AFib,SVT or palps and seeing what is good. Afib is a bit like being stalked, and we owe it to ourselves to find the good in what is happening all the while giving ourselves compassion even when both tasks seem overwhelming. I'd forgotten to "smell the roses" in the last year and it is once again my task and enjoyment. There is good to be had still, if possible don't sit in waiting, but discover what is good around you however small it may be - it certainly feels better than the impending doom of Afib! New habits to create... you will!

Hold to your "it might"! Don't forget many who are on this site are still in process, so you don't hear much about those who are living in peace again! Those are in the majority!

Finvola profile image
Finvola in reply to iris1205

I know what you mean, Iris. In the first few weeks of Flecainide, I ended each day with the thought 'another good day and no gasping and thumping - great'. Then I stopped thinking about it altogether and it really helped no end to try and put AF into the background of my life.

Here's to joining the majority!

souljacs4 profile image
souljacs4 in reply to iris1205

Such a lovely positive post Iris.

iris1205 profile image
iris1205 in reply to souljacs4

( ¯`v´¯ )

`·.¸ .·´ ♥

¸.·´¸.·´¨) ¸.·*¨)

(¸.·´ (¸.·´ .·´

Beta44 profile image
Beta44

I think I owe a lot to Flecainide. I have been on twice daily doses for more than 20 years and still only get PAF every week or two for a few hours. Never had any problems, perhaps I am just lucky that it suits me.

Peter

Finvola profile image
Finvola in reply to Beta44

Thank you, Peter - that sounds good and over such a long period of time, too. I hope you continue to keep well - best wishes.

Crab profile image
Crab

I am very lucky I have been on Flecainide for about 8 years first of all as a pip. About 5 years ago I went on 25 mg twice a day now I have a episode about every 18 months which on last about 2 to 3 hours. Very very happy I can even have a few beers now as well. Whoops that should be 50mg twice a day.

Craig

Finvola profile image
Finvola in reply to Crab

Craig, that sounds like treatment I could cope with too - not the beer though, I preferred red wine!! All the best.

Crab profile image
Crab in reply to Finvola

Red wine is good although the temperature here the other day was 40c Beer a must.

Barb1 profile image
Barb1

I have a friend who has just been put on Flecainide and is very pleased that it is controlling his AF. Should he be on an anti-coagulant as well, as you can never cure AF?

Finvola profile image
Finvola in reply to Barb1

Barb your friend should certainly discuss this with a cardiologist to get the correct treatment. Many people feel that simply having AF is reason enough to take anti-coagulants. Stroke risk can be estimated by using CHADSVASC calculator and bleeding risk with HASBLED - see chadsvasc.org or just Google it for lots of information.

paulina1 profile image
paulina1

we are not physicians on this board and whatever answer you get here is only from lay people. If you need some explaining have your doctor do it or seek the advice of a second opinion doctor.

I, persoally, fibrillate very rarely, once in years, however I have to be on Warfarin and Diltiazam because of my old age and the fact that my brother had a stroke and father died of heart desease and went to emergency room several times while fibrillating..

I am happy to keep my heart in sinus rythm and will gladly continue with this thrapy rather than be faced with heaven forbid stroke. Furthermore, I rebelled many times about having to take Warfarin but the doctors just turn a deaf ear to me and are quite adament about my therapy especially since it works for me. I have tried 2 FDA meds Pradaxa and Xaltra where I wouldn't have to take Warfarin however, unfortunately I had bad reactions about both of them.

Pauline

Barb1 profile image
Barb1

Thank you Finvola. His CHAD score is 0 and because this is all very new to him and his consultant is not recommending anti coagulants, he is happy not to ask for them. However I am concerned, especially as he lives, normally, in a remote part of the Far East.

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