Flecainide: friend or foe?

I have read many postings on this bulletin board where afibbers have had various problems with flecainide. This has not been my experience. Since starting 100 mg twice a day on May, 19, I have not had a single breakthrough (over five months now) and with NO side effects. Has anyone else had a similar successful experience with flecainide (Tambocor)?

Also, I would be interested in knowing how long your flecainide has effectively controlled your afib. Has anyone out there had their flecainide keep them in normal sinus rhythm for YEARS? Is this possible, or does the drug lose its effectiveness typically in 6-12 months? When the drug loses its effectiveness, is it the medicine that has lost its effectiveness or has the afib gotten worse and "overruled" the flecainide?

Also, if afib begets afib, does the reverse also hold true? If an afibber goes a long time without an episode, does the heart become "desensitized," with the heart relearning staying in normal sinmus rhythm?

I would be appreciative of all responses.

Stan

Stan,
Wow, it's great to hear about your success, especially on tambocour, I had nothing but trouble with it. What were your episodes like before tambocour?

Joe

Stan,
I started taking flecainide(2x 50g) on December 9th 2001 and have not suffered an episode of AF since then.Before I was getting an episode every 2 to 3 months for about 10 to 12 hours duration. I also lost 24 pounds in weight, stopped alcohol, lowered my BP and learned how to control my stress.
For me Flecainide has been a definite friend.


John v.55

Greetings Stan
Excellent question I have just started taking Flec on demand although my cardio says if I get A fib more than once every two weeks or so then maybe take it daily . I rather stay with the on demand approach however if it can be stopped alltogether well??
They never said it was going to be easy.
Chris H

Stan,

My brother has been on flecanide for six years and swares by it. He has few episodes and long periods with none at all. I was not so lucky. It put me in flutter which has remained after I went back to Norpace. My EP said the flec effectively changed the nature of my arrythmia, from fib to flutter. For me, flutter has been less bothersome, but more persistant.

In answer to your question about "positive remodeling," I would say (and my EP concurs) the answer is a definite yes. The less frequent you are in AFIB, the less likely you are to have an episode. This allows many people to cut back on their dose of a drug. However, if it is the drug that's keeping you in NSR (and not other changes you've mad in your life), I'm not sure if you'd ever be able to eliminate it altogether.

BillB
48;A;2000

Does Flecainide allow enough positive remodelling to take place which would in turn allow for positive effects of balanced nutrition to take over the sustenance of nsr after such remodelling. If that were the case I could be persuaded to try it.

Adrian v49

Adrian,

I'm sure flecanide is not unique in terms of "positive remodeling." Probably anything you do or take that keeps you in NSR can help you stay there. NSR begats NSR, to coin a phrase.

With respect to your other question, I know that if I became consistently in NSR all the time due to a combination of drugs and/or natural things, I'd try to wean off the drugs and see what happened. It's what we all would want, I'd guess. But there's no guarantee. I think Jackie got into a very good pattern with flec and magnesium, reduced the flec, and the slipped back into a more unstable pattern. Then she increased the flec again and went back to the good pattern. It may be an individual thing.

BillB

I was on 50 mg. flec, twice a day, and was still having episodes. My EP increased it to 100 mg. twice a day, and now I have and episode about once a month, sometimes I go 2 or 3 months without an episode. I also started taking mg. 6 months ago and I think that has definately helped. My episodes are very mild, more of a nusiance than anything else. They run 12 to 14 hours. The last several hours, I have to check my pulse to tell if I am in AF or not. I feel that flecanide is definately a friend. I take one slow release 180 mg. verapamil once a day also to keep the heart from going too fast should I have an episode.

Stan,

I was on flec. for a year about a year ago, and it kept me in NSR all the time, then it lost its effects. It was the only med that worked. I then went about a year trying other meds, none of which worked, and decided to try flec. again. I had been out of rhythm for 1.5 mths because I quit dysopyramide. I figured, why take a drug if it's not working. I had made major dietary changes in 2/03 (Paleo diet) and had also thought that maybe that would have made a difference, which was another driving force to quit dyso. Being out of rhythm (flutter) for so long started to wear me down, so I had some flec. on hand and decided to give it a go again. At the second dose, I went back to NSR, and have been there since May 03, with two breakthroughs. I contribute part of the success of it working again to my dietary changes. Flec. uses the Cytochrome P450 2D6 enzyme in the liver to metabolize, and also uses dopamine, a neurotransmitter derived from the protein phenylalanine. Because I was eating meat 3x's per day, I think I somewhat built back my stores of this amino, allowing flec. to work again, but that's an assumption. Flec. is a sodium channel blocker, and works by numbing the His Purkinje system within the heart, somehow. I don't know whether it remodels the heart or changes the way the cells respond to sodium, all I do know is that it's working, until I further the rebuilding of my health.

Richard

Hi Stan - I've reported my experience with Flec before but here it is again.

Aug. 2001 - placed on 50 mg. flec twice a day (hospitalized to do this) Controlled afib for about 2 months. Then, breakthroughs occurred every couple of weeks. Eventually the breakthroughs were every few days or maybe once a week.

By the fall of 2002, a little over 1 year later, I was still having regular breakthroughs which increased to the point they were coming every other day. In Feb. of 2003, I went to the ER at CCF after 4 days of constant afib, only to learn I was in flutter. I was cardioverted and sent home with double the flecanide dose - 100 mg. twice a day. That held for about six weeks and since I had the directive to return to the ER if any event lasted more than 24 hours, I did just that. Fortunately, I converted naturally after 39 hours there.

The same regimen continued - 100 twice a day and I was in afib - 2 - 3 times a week, but this time I had directions to take an additional 100 mg. anytime I started afib. Eventually, this meant I was taking 200 mg. quite frequently at the onset. The good news is that I converted to NSR rather rapidly - between 20 min. to 4 hours max.

Then I saw Carol's post about her success in eliminating afib with extra magnesium glycinate - doses quite high. I decided I had nothing to lose and increased to 800-900 a day, along with about 300 mg. of a plant based potassium supplement and have also increased dietary K.

Since July 1 of 2003, I have had only about 6 breakthroughs; and for the last six weeks, I have had none.

I eat all my triggers except sugar, alcohol and heavily salted foods and follow a paleo-influenced diet. I am now down to 500 mg. magnesium glycinate a day and 300 K supplements plus heavy dietary intake of minerals.

Additionally, I had a chiropractic adjustment on my diaphragm to eliminate random vagal stimulation; I increased my exercise routine to double the previous; I've lost about 35 pounds without dieting because I finally have the insulin resistance from which I suffered reversed to insulin sensitivity; have normalized the hypoglycemia and hypothyroidism. I had energy work to eliminate repressed stress. I meditate at least twice a day.

So, it is impossible to say which factor influenced the success in eliminating breakthroughs.... I experimented with lowering the dose of flecanide down to 50 in the morning and 75 mg. at night and ended up with breakthrough....so it would appear I'm hooked on the higher dose.

My ablation is scheduled for 11/12 with Dr. Natale. I'm really anxious to get off the drugs since I have reduced strength and energy.

My personal thought is, Stan, that you probably have several years before you become intolerant to flecanide. Hope this helps.

Jackie

Hi Stan:
I've been taking flecainide(or tambocor) for about 2.5years. I haven't had any bouts of AFIB during that time so it has been effective in that sense. I do feel that it makes me tired so I don't think it has been completely without side effects.

Thanks, Jerry