Any experiences with Flecainide?

Hi,

I just came across this article by John Mandrola: The changing role of rhythm-control medicines for AF.

Very smart approach in my opinion, particularly this:

"We know that AF begets AF and that regular rhythm probably begets regular rhythm. I often use rhythm meds as an initial tempering measure. Let's get things settled down and then talk about weaning off the medicine in the future. Sometimes AF passes as mysteriously as it comes."

" Surely AF ablation will get better in the future. So here's another area for using rhythm-control medicines. Let's say a medicine is nicely controlling AF. Why not wait to ablate? AF ablation will not be any different in the next month, but it will surely be better in two years."

What do you think? Isn´t it an option to take Flecaide for a limited time during "particularly bad AF episodes", then wean it off (e.g. after 2 months) and see what happens without it? Or does Flecainide require a steady treatment? (I don´t think so since it can even be used as PIP.)

I used it (300mg plus 40mg Diltiziam) as a PIP and it always worked. I chose to get an ablation because I got mentally tired waiting for AF to happen and I didn't want to be on the drug on a regular basis. Shannon convinced me in a very helpful reply to an initial post (and my EP confirmed) that it's better to be proactive because AF gets more difficult to treat if it gets persistent and I was getting 3 or 4 incidents a week in the end. I didn't really worry about better techniques in the future as the EP (Dr Barrett, now a Director of the Al-Sabah Arrhythmia Institute) made the point that new techniques need teams to get trained in the use of them and they have to be proven first anyway, all of which would take time. And he felt a standard PVI should be all I would need, so I went with it.



Edited 1 time(s). Last edit at 06/01/2013 09:08AM by afhound99.

Hey AFhound,
Dr Barret called me yesterday I had some minor symptoms like sore throat and slight headaches and sinus pressure.
I gave him your regards!

Dirk,
I used Flec for 26 months prior to my ablation with limited success with it failing the last 3 months. Remember most ARR drugs are only effective for 50% of affibers and they lose effectiveness for most eventually as the disease progresses. But for some it does work long term. Maybe worth a dry as it does prevent electrical and structural remodeling but Dr Natale wasn't so sure about that study.

Thanks McHale, I am surprised he remembered me.

I'm not sure he remembered you to be honest but then I told him the Englishman from Boston and I think that might have jarred his memory........

Oh yeah, seeing as he is Irish he would've remembered that (and a lot of other stuff going back to Elizabeth I).



Edited 1 time(s). Last edit at 06/01/2013 02:02PM by afhound99.

Dirk,

I recently described my afib experience here: <[www.afibbers.org];.

Flec has been very useful for me. It has never failed me for on-demand use to terminate an episode. It also worked 6 or 7 months ago taken in advance to keep me from going out of rhythm.

Mandrola's idea is a good one and one that use personally.

George

I started taking Flecanide at the end of Feb 2013, 50mg BID and has been working fairly well. I went three months AF free then had a one hour episode on Monday and Tuesday. Thinking that the bronchitis and coughing I have been dealing with over the past two weeks set it off. Thankfully, I didn't have to take any antibiotics but the over the counter DM and antihistamine probably were the triggers. At onset, I took an extra 50mg of flec and 50mg of atenolol.

Got both events recorded with my ECG for the next EP visit.

I was lucky to have seen Dr. Barrett just before he moved to NYC.

cheers,
Ralph

Hi Dirk, I regularly follow Dr John and often like his blogs and other posts very much, incuding the one you quote. I have been taking 50mg of Flec twice daily since the end of September 2012. I have had no AF episodes since, but it is rare for me to have one in winter. I had one episode every May from 2009-2012 inclusive, so it has been a relief to get to the end of May 2013 without any. In 2012 I went on to single episodes in June and July, with 4 in August and 2 in September - hence my decision to take Flec regularly.

I have not noticed any side effects whatever.. I do find it complicates my life to have to take 2 pills daily ON AN EMPTY STOMACH. In fact I modify this to within one hour of eating, and even that goes by the board sometimes. I figure, perhaps mistakenly, that since almost all my episodes occur when I am in bed it is not so important if I don't completely absorb the dose I take during the day.

If I manage to complete an episode-free year, I would quite like to try a Flec holiday, but my consultant is not keen. The most important thing is to remain episode free while on Flec - I am keeping my fingers crossed.

Flecainide has worked for me 100% since last September. The only time I had an episode was when I missed my morning dose two days in a row, then AFib was triggered by a hard workout. Before I started Flecainide, I was having daily AFib episodes and sometimes even twice-daily episodes. I am on 100 mg twice a day.

I suspect if I were to go off it, the AFib would come back with a vengeance.

I didn't know you had to take it on an empty stomach. My usual times to take it have been 1-3 hours after eating anyways (but that wasn't a consideration in me choosing the times). No-one told me I had to take it on an empty stomach.

Dirk – I took flecainide for 6 years prior to the eventual ablation.. At first it worked and then over time, I seemed to have increasing frequency of breakthrough AF which eventually became daily or every other day lasting long periods… typically 24 – 27 hours with short breaks of NSR and then back in AF again. Dosing increased to 150 mg twice a day and it still didn’t hold.

Through experimentation, I learned that if I repleted to optimal, the essential nutrients that heart cells require for proper electrical conduction…. (magnesium, potassium and alkalinity and other refinements)… not only did I not have AF, I could reduce the flecainide down to only 50 mg a day.

Recently, when the Lyme treatment caused a severe AF reaction due to die-off (Herx response) I was eventually able to wean down once again to only 50 mg which the EP said was not responsible for keeping me in NSR, but rather that my strong heart had stabilized… (due to the vigorous nutrient support). I don’t like the side effects of flecainide so I was pleased to stop it completely.

My nutritional protocols are found in The Strategy report… and the alkalinity suggestions are found in the numerous posts on using the home-made magnesium bicarbonate water known as Waller Water or WW. The Strategy is being revised to include more detail on what worked so well for me. Meanwhile, if you have questions, send me a PM.

[www.afibbers.org]

Jackie