Coming off Tambocor (flecainide)

[Jonathan_C]

So I have been on flecainide since April 2017 and we (my EP and I) are seeing if we can stop taking it (I had an ablation in Jan 2017). I have been on 100mg per day (the slow release capsules) and went cold turkey on Monday.

I am still on xarelto (anti coag) and cardicor (beta blocker) and am now feeling all manner of anxieties and palpitations. Is that how it is when you stop taking something that you have taken for so long and/or will magnesium deal with this?

It could all be in my head as I am really hoping I can stop taking these meds and may be thinking about it too much!

[BobD Volunteer]

I suspect you are right in this being normal. I was on propafanone not Flecainide after my ablation and the doses were much higher so easy for me to cut down a bit a week over several weeks. The anxiety is normal by the way so try to relax. There will be some bumps along the way but the results are worth it.

[pottypete1 in reply to BobD]

Hello Bob

So do you not take any rhythm control drugs now?

Pete

[BobD Volunteer in reply to pottypete1]

Not normally Pete. If I get a lot of ectopics I do take pip for a day or two till they pass.

[pottypete1]

I would be interested in how you get on.

I have been on Tambacour (Flecainide) for over 20 years and after the last 2 ablations I had last year I have been in NSR since August 2017.

At the time I was on 150Mg x 2 per day. My EP said to come back down to 100Mg x2 per day and then to come down to 50Mg x 2 per day.

I have taken the first step but am worried about the next step to 50Mg.

I have an appointment in early April with my EP and I am of a mind to stay on 100Mg x 2 per day until then.

Having been AF and Atrial Tachycardia free for some time I am reluctant to change anything as the last thing I want to do is to rock the boat.

Pete

[Jonathan_C in reply to pottypete1]

i was on different levels of tambocor before my ablation - i felt a big difference when exercising, otherwise no noticeable difference (except things like walking up stairs). From my experience I would say keep stepping down and then if you breakthrough get cardioverted quickly and go back onto a higher dose than when you broke through - as you know life will be fine at that dose.

[secondtry in reply to pottypete1]

When you do step down, as I hope to do later this year, invest in a pill cutter and reduce very slowly over several months. This is not advice I have been given but just seems common sense to me to deal with a strong drug and your own mind, which via the Vagus Nerve can cause unnecessary problems.

[Jonathan_C in reply to secondtry]

I think this is solid advice and I would follow it, but the flecainide I take comes in capsule form so it can't be cut. My EP would have preferred to drop down to 50mg, but that dose isn't available in sh*thole countries, I mean South Africa

[pottypete1 in reply to secondtry]

Thanks for the advice. I have got 50Mg tablets so will not need to split. I am not very good with my hands anyway and no doubt would not split a tablet very well even though I have 2 or 3 different types of pill splitter.

I agree that the Vagus Nerve can cause unnecessary problems. I have acute nausea a lot of the time and my EP thinks this could be associated with the vagus nerve.

I am being very cautious about changing my drug regime having been on Flecainide for nigh on 25 years.

Pete

[Spoiler in reply to pottypete1]

I was initially started on 100 mg every 12 hours in the hospital, but changed to 50 mg on 3rd day. I was taken completely off after doing great for 7 months until I had a stress test with some low rate vtach. I had ablation Jan 05 with a different EP at Cleveland Clinic, which put me back on the 50 mg Flecainide following ablation. He plans on trying to take me off in 3 months. I know I freak out at the thought of the dreaded persistent afib and DC cardioversions since I have had 11 in about 4 years. It is all A guess I feel....I am totally normal until the afib hits😲

[pottypete1]

Yes sounds like a plan. In fact my EP has stated catagorically that should I go down to 50Mg x 2 or nothing and I go back into AF I should go to the hospital and get a cardioversion. That is very comforting.

However the only thing from my point of view is that I have been in and out of hospital in the past 26 years so many times I am beginning to feel more apprehensive about going into hospital. In that time I have had 7 ablations and more than 20 cardioversions.

I think the softly softly approach suits me at the moment but if he gives me real comforting words at my April consultation I shall no doubt give it a try.

Pete

[Hidden]

Hi Jonathan, I was asked to stay on Fecainide (50mg x 2) for 6 months after my ablation. I tried cutting the tablets, but they just crumbled so I just stopped. Within a day I had a couple of mild episodes but that was all.

[chris45558]

Hi ive been off it for a couple of weeks. Have a lot of ups and downs. Even had SVT ended up in hospital. However im sticking it out

[fnurd]

When I came off flecainide post-ablation I had been on it for 12 years, so I did it gradually. I did get quite a few ectopics and the odd palpitation, but NO AF (so far anyway)!. Hope it goes well for you.

[RaySyl]

I have been on 200gm a day before my Ablation in February '17 and since, apart from a short period early this month when, with the approval of the AFib nurse, I went down to 100mg a day. Result? AFib I am afraid but only for two days after going back up to 200mg. I hate taking meds but are having to come to terms with the fact that Flecainide and I are going to be content companions for the duration. However long that is.