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6 months post ablation worried about coming off flecinaide

Dmackie57 profile image
17 Replies

Well I am 6 months past my ablation and all has gone well. Finally not tired anymore and walking 2 miles a day. Saw my EP last week and he said to stop the flecinaide 50mg x 2. As crazy as this sounds, I am worried about coming off this drug, even though I didn't like it at all when I started taking it. Am I nuts? I am afraid the AF will come back. Has anyone else felt like this? My EP said you don't have to ween yourself off you can just stop. I am thinking of just taking one in the morning only for a week then stopping completely. Can anyone relate their experience doing this? I know we are all different. Thanks ❤️

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Dmackie57
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17 Replies
Rellim296 profile image
Rellim296

I just gave it up - with the greatest pleasure. I took one as usual the day I went for my appointment and was told that was it and don't take any more and I didn't, Well, not on a daily basis. Lots of freedom! No waiting an hour before eating. Food whenever you like! Try it.

I was told to do the same after 6 months, but I tried to reduce the dose by trying to cut them in half but failed. Almost immediately I did have a short episode, but nothing since.....Go for it....

Dmackie57 profile image
Dmackie57 in reply to

Thank you. 🤞

jeanjeannie50 profile image
jeanjeannie50

Immediately after my third ablation in July last year, my EP said to stop my 2 x 100mg Flecainide. Without it I felt wonderful for about 12 hours, then back it all came with a very high heart rate and although due to go home that day I was kept in hospital.

I've now been 18 weeks AF free and on Monday started to reduce my Flec, instead of 2 x 100mg I'm now taking 2 x 75mg. I just feel that after having my heart restrained by that dose for so long, for me it's not a good idea to stop the medication suddenly. Your 50mg is a lower dose so coming off that may be ok. You could of course reduce it to 2 x 25mg for a week, then just 25mg a day for another week. I'm not medically trained, just speak from experience. I too am worried my AF will come back so completely understand your concern.

Jean

Dmackie57 profile image
Dmackie57 in reply tojeanjeannie50

Thank you. It's nice to know someone else felt like this. ❤️

JJC999 profile image
JJC999

You'll never know if the ablation worked if u don't come off the flec. I'd stop it

Bagrat profile image
Bagrat

I would reduce gradually as jeanjeannie50 said. I have halved my dose with no ablation so I too was a scaredy cat. Did it slowly and apart from the odd ectopic I have been fine. Doctors are very gung ho and as long as physiologically no risk they sometimes don't look at bigger pic. It certainly will do no harm to reduce slowly.

Rellim296 profile image
Rellim296 in reply toBagrat

Yes, I was taking 150 x 2 and was told to drop to 100 x 2 on the day of the ablation, then down to 50 x 2 about 6 weeks later. As I said, it was on the day of my appointment (4 months after the ablation) that I went down to nothing.

Dmackie57 profile image
Dmackie57 in reply toBagrat

Thank you. He had me wear a monitor for 7 days and it was completely normal so I think he is hoping that gives me some confidence. I reminds me one of the main reasons for the ablation is to hopefully come off meds.

Beta44 profile image
Beta44

I was told to stop 200mg daily on the day of my ablation and had no problems.

jennydog profile image
jennydog

I agree with jeanjeannie50 . I too was scared about stopping the flecainide so I did it very gradually. I also retained a supply to use as a pip. It's good to know that it's inexpensive and non addictive so I don't feel guilty about it.

secondtry profile image
secondtry

It seems to me very logical to come off it slowly like Jean suggests, firstly its what you, I expect, feel more comfortable with (important re Vagus Nerve) and secondly there is no downside this way (unless your EP said otherwise). You don't say how long you have been on the Flecainide, as a general rule of thumb the longer you have been on it the longer the weaning off period - exact timing of that of course is only with you. Good Luck.

Dmackie57 profile image
Dmackie57 in reply tosecondtry

I have been on it a year this August. But my life has changed. I lost 30 pounds. Stopped drinking and left a high stress job!

I take eliquis 5mgx2 but my Chad score is 1 so he may put me back on aspirin.

Post ablation Number 2 I was nervous about stopping Flecanide I took 75 x 2 per day. I was very aware at time my body was ready for the next dose and it made a difference when I took it. I was told to stop about 3-4 months after ablation. Also my dose considered low I took it done to by 25mg each dose for 2 weeks then reduced again. I'd had the experience of rebound from stopping BB after Ablation 1 so was cautious. I think my body missed the flecanide and shortly after stopping I did have an episode of AF HOWEVER none since and now 7 months after ablation 2. Reducing was definately the right route for me even though many say you can just stop them. Due to lethargy I am now reducing the BB too but the EP did warn me that measurements may raise initially however to ride it out. What you are feeling makes a lot of sense to me - go with your gut. The biology of belief is very important. So far the main thing I have learnt after Ablation 2 is not to assume it won't all work out. ............she says fingers and toes crossed.

Dmackie57 profile image
Dmackie57 in reply to

Thank you so much. My EP says go ahead because I should be fine. Just nervous. He says I have to live my life.

Thomas45 profile image
Thomas45

I now have long-term persistent but mainly asymptomatic AF. While Flecainide did work for 10 years or more it doesn't now so my GP advised me to stop taking it, so i did. I just stopped with no adverse effects.

Dmackie57 profile image
Dmackie57

Thanks for sharing your experience. I will probably do the same. Otherwise I will never know if the ablation worked!

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