Strategy for flecainide dosage reduction

Hello - This is my first post here, as a I am new to this forum. (I'm impressed with the quality of the information here and impressed with the intelligence and frank nature of the forum dialogue too.)

I was diagnosed with AF in October, a week before I was to run my first marathon. For me, AF came on rather suddenly and with a vengeance. (I'd been training for and running long distances for about 2.5 years when diagnosed and not really had any issues; in fact I felt more healthy and fit than ever before in my life.)

I'm 47 and otherwise have always been very healthy. In the months that followed the diagnosis, after determining that my heart is normal, I didn't want to run right out and have an ablation, and hated the option of being on medication for the rest of my life, but thought that maybe medication could buy me time to figure out a long-term plan. I cut out almost all caffeine, all alcohol, and stopped running cold turkey for several months.

At first I tried PiP, but after a couple of months of sometimes every-other-day events, and widely varying results with PiP propafenone, I agreed to go on flecainide 50 x BID + 25 metroprolol. That seemed to sort of do the trick for a while, but after a breakthrough (which occurred on my way to a checkup with a cardiologist who told me my EKG showed flutter this time), I took a "booster" dose of flec and had some scary proarrhythmia. Long story short, after confirmation that flec was regularly converting my AF to flutter, my EP indicated that she could ablate the flutter to eliminate the possibility of proarrhythmia and continue to depend on flec to suppress the AF. I had the flutter ablation done back at the beginning of Feb.

The CTI ablation achieved bidirectional block, but breakthroughs slowly crept back in. Long story short, I'm up to 100 x TID flec (max daily dose, since I'm taking it 3 times a day) + 25 metoprolol now. I have transient side effects that I won't want to deal with long term (vision disturbances and light sensitivity), and still experience some PACs, but life is much improved over several months ago.

All along the thing that has driven me crazy is the knowledge that SOMETHING is causing this for me, and drugs and ablation are just addressing symptoms rather than root cause. I've expressed this desire to "figure it out" and been shrugged at by doctors and told I'll drive myself crazy trying to do that. But... ideally I have another 47 years to go, and that's a long time to just keep putting bandaids on things.

I've observed recently that I could quiet PACs (even just before I was due to take my next dose of flec) by drinking a low-sodium V8. That got me thinking again about dietary triggers and electrolytes, so I wound up here. I had been drinking Natural Calm before bed each night (and don't seem to have issues overnight, other than some palpitations when I first lie down on my left side)... but definitely struggle more with PACs from 12 or 1 pm on. Hmmm... could it be that I do have a magnesium deficiency? Following advice here, I've started adding 100 mg of mag glycinate at lunch and dinner, starting a few days ago. It could be coincidental, but I've had an almost complete elimination of PACs. Progress! (I say that knowing I need to immediately knock on wood.) I had just prior to that determined that returning to (super light, short distance) running had no effect on my PACs, so I am also continuing to build up very slowly on physical activity.

If you've read this far, thank you for reading... and all of this is leading to a question. If I find that this change in regimen is indeed continuing to quiet the PACs, my first goal will be to cut my flecainide dosage, because of the effects on my vision. Any suggestions as to how to cut back? My EP is dismissive of supplement usage and when I last saw her on March 1, scheduled me to come back in in September, so I'm feeling a bit on my own on this one.

Thanks for any thoughts or insight you might be able to share!

Karen

Hi Karen,

Training for a high altitude race (start at 6300' end at 14,100' over 13.3 miles) was what kicked off my afib career 14 years ago at age 49.

Detraining - not entering endurance events and the training for them and moderating other endurance activities plus magnesium and also potassium and taurine have been what has kept me in relative afib remission over this time. I remain very fit, but activities are oriented away from long duration high heart rate ones.

There was a time that I was stress eating cheese due to a divorce (literally wheels of brie) and my control diminished significantly. After 18 months, I figured out this reduction in afib control was due to the calcium in the brie. When I quit eating it, my control returned.

During the time of lower control, I had 4 episodes in a row. I started taking 300 mg flec before bed (I'd used flec PIP before - and after). That worked, next night took 200mg. Then I titrated down to 0 mg over a month. I also started taking powdered ginger spice (wrote that up here: <[www.afibbers.org] ) before bed. I figured I could always do additional flec as PIP to convert if I had a breakthrough. I was continuing with the mag, potassium & taurine. I kept up with the ginger for another 6 months till I cut out the cheese. The ginger wasn't as good as the flec, as I'd have an episode about once a month. I quit the ginger after cutting out the cheese as I did not need it. I still pay attention to endurance and use a lot of mag, potassium and taurine.

Good luck!

George

Hello Karen and welcome.

You may not have been back very far in the archived posts, so here's one from 2016 that you may find useful.
[www.afibbers.org]

I encourage you to continue with repleting and balancing your electrolytes as many afibbers who are also endurance exercisers find that to be helpful.

Jackie

Thanks, George. Sounds like our situations with endurance exercise are somewhat similar. I suspect that this past season I was not as good about clean eating and hydration as I had been in past seasons, or perhaps it just finally caught up with me. I also had been put on a maintenance dose of spironolactone (for hormonal acne, an off-label use) a few months prior to the spring of last year, and although spiro's potassium-sparing qualities are supposed to help with AF, I wonder if that also helped to tip my electroyte balance in the wrong direction. I'm off the spiro now and I suppose I'll never know, but that sense is hard to shake.

That's great info about the ginger - certainly harmless and easy enough to try! I've also noted the cautions about calcium intake. I'm generally going to try to be much more conscious and aware of what I'm putting into my body food-wise.

Out of curiosity, have you avoided beta blocker use this whole time? My EP won't take me off of the metoprolol (which surprised me, since I thought the flutter ablation was supposed to eliminate the possibility of proarrhythmia/1:1 conduction to the ventricles). I have the sense that either the flec or the metoprolol is giving me a bit of brain fog, and I definitely notice more tendency to be lightheaded when I do get my heart rate going due to exercise (probably not tenable long-term)....

Why are you not considering an ablation with Dr. Natale. You'll drive yourself crazy looking for a cause. Very rare to find one other than bad luck. Sure you can do all the things to try and help but you need a durable ablation at the hands of a master. Man I sound like Shannon.

Thanks, Jackie, for the welcome & the reference - I have a read a lot about endurance exercise and AF, but had not seen that thread. I'll definitely dig into the links!

It's really easy to find advice that warns against too much endurance exercise, and much more difficult to find specific recommendations for continuing to participate in a way that reduces the risks, so I am particularly looking forward to reading more in the links. It has been diffficult for me to see myself as an endurance athlete, because I am relatively new to it, and don't feel too much in common with the life-long competitive athletes that most studies seem to be based on. I just know that running has been such a fantastic thing for my anxiety and overall well-being that the idea of quitting permanently is very difficult to face.

The vagueness of the cautions about exercise and AF, woven in with a sense of urgency to "do something" (like ablation), combined with the lack of a "cure", the "afib begets afib" mantra... ugh, this condition is really a jerk.

Really, thank you so much for all of the helpful posts and articles here. I'm feeling very appreciative!

Karen

Fibrillator - I don't rule out something like that, but it's not my first choice, especially if there's a chance I can manage the condition naturally. I understand that ablation can be very helpful, but my understanding is that ablations don't guarantee permanent freedom from symptoms, and they are awfully invasive and expensive. I guess I want to avoid using a sledgehammer to crack a peanut...



Edited 1 time(s). Last edit at 04/26/2018 01:39PM by kbog.

Oh I get it believe me. I just spent three years looking for the answer and multiple failed ablations. The 4th and 1st with Natale has me sitting here 7 months later afib free and off drugs.

Is it a cure, that is debatable and depending on how you define cure. It's the best thing that exists today to stop the afib from happening. That's as good as we can get. How long will it last, who knows, but it sure beats living heartbeat and episode to episode.

I would only try to save someone years of the drug merry go round, looking for the random cause etc. Your story is like most here, it starts out slow, you look for every answer you try everything because there just me a cause and in the end none of it seems to slow the beast.

Everyones timeline is of course different so please don't take this as anything but tyring to save someone from years of misery you don't need to have.

I get it, but though I was in misery in November & December & January, lately I'm almost feeling like I was before all this started -- just a few PACs. Maybe that will continue; maybe it won't. With the exception of the drugs / high dose of drugs, everything I'm doing right now to manage this is stuff I'm happy to do indefinitely. So why not see if I can cut back on the drugs and maybe get off of them without sacrificing the symptom-free living? Nothing to lose.

I've thought about this a lot: If after months of trying to figure this out, I just have an ablation anyway, will I regret the time spent trying to figure it out? The answer is an unequivocal "no" for me. (I get that it may be different for others, I really do, and I get how awful the roller-coaster is when you're highly symptomatic at unexpected times.) I'm analytical in my approach to everything, so the afib can just deal with that.

Karen - I'm very appreciative of your philosophy as it parallel's my own because of past negative experiences from relying on drugs and surgery rather than first identifying and managing underlying causes, although I did give into ablation and have not regretted that decision.

As for many other paths of investigation, you may want to consider the biophysical science that observes the impact of the oxidative stress factor that results from endurance exercise and how various antioxidant protocols can help reduce the ROS and also help prevent the resulting inflammatory process and fibrosis which is very important as well. A good start is scanning through the Afib Conference Archives ... esp. Session #24 as a primer. [www.afibbers.org]

You don't have to be a veteran endurance athlete to experience the adverse effects of the ROS damage since some individuals are more sensitive and susceptible or vulnerable than others.

Glad to help guide you to more references.

Best to you,
Jackie

Karen,

I'm 10 years younger than you. I got afib all in a sudden last August. While knowing there's no cure for such condition and feeling frustrated, I'm finding all abnormalities in my body and correcting them in the hope of kicking afib away. Many people would jump right into ablation or will eventually get an ablation after a period of try and fail. I'm working hard to correct anything I can find in my body as well as life style change, but always keeping in mind if all these failed, Dr Natale is the only I should call.

Best wishes to you!

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kbog
Out of curiosity, have you avoided beta blocker use this whole time?.

Yep, but I direct my own treatment. I look at docs as consultants. Just like in business, you can take their advice or not. In any case a BB has never been prescribed, but I was the one who figured out my protocol, so I don't talk to cardios/EPs very frequently.

Karen,

Increase the mag and decrease the EP who won’t listen.

Flec is notorious for vision “floaters”. 50mg BID is an option if you’re a really small person, but 100mg BID is pretty standard. Propafenone is another option, but it has secondary BB effects and if combined with a BB may very well make you feel like you’re dragging a boat anchor while running. Did for me. Maybe ask about Propafenone with no BB. I did that and it worked “OK”.

Jackie, thanks for another set of good things for me to read!

kong2018, thank you. Sounds like your approach is similar to mine. Good luck to you as well!

George, I'm still acclimating to the realization that doctors seem to follow guidelines and standard practice more than anything else. I've gotten misinformation in response to targeted questions and poor expectation-setting that had a huge impact on my experience as a new afib patient. Pinning them down is difficult, it seems, and I guess that makes sense when the condition in question has a lot of unknowns and only somewhat effective therapies. Maybe I'll need to consider just going off the beta blocker, or pushing the issue with the EP's nurse, if I continue to stay in NSR. After all, I do have IR metoprolol on hand that I could take if I went into AF...

Thanks, wolfpack. Yes, 300 mg flec a day is a high dose for a person my size, and at 100 and 200, I did not have these side effects, so that's why I want to cut back. Propafenone (at PiP doses) gave me a metallic taste, so I'm hoping not to return to that drug.

I'm really looking for advice on how to manage my cutback of flec... right now I'm taking 100 mg three times a day. Do I cut back to 100 mg two times a day, or 75 mg three times a day, or ...? Whatever I do, I'll stay on the new dosage for at least a week before I cut back further, as I've learned from my own experience that it takes a while for serum levels to normalize.

As I understand Flec (my dad takes it), it is normally BID (2x/day). To be at 300mg/day you should be on 150mg mornings and evenings. But that is a large dose. I would ask them to try titrating down to 50mg BID and see how that works. You can always go back up if needs be.

As you're no doubt figuring out - YOU manage AF. The doctor's aren't going to do it. They are resources to be used (and no longer used sometimes) to get to your end result, which is NSR.

Good luck!

Yes, flec is usually prescribed BID, but I had noticed a pattern of my heart trying to go into AF in the last several hours before I was supposed to take the next dose, so I dug into the prescribing information and looked at studies at length, only to see that in some rare cases, a patient needed TID dosing for adequate control of symptoms. Also, that children above infant age and under 16 metabolize flec so quickly that they also needed (in one particular study of trough/peak serum concentration of flec) to use 8-hour dosing as well. It definitely has worked well for me, and my conclusion is that I metabolize it more quickly than the average adult. (I had to really state my case in order to get the doc to prescribe it TID, because they just want to do everything per standard practice/guidelines.)

Who the heck put Flec into a kid? I don't even want to think about that! Yikes.

Understand the 3x/day now. I hope it works out. If you "graduate" to the next level of AARs, you'll get the 3-day hospital stay-cation. Best to avoid that if at all possible. And, remember, amiodarone is a curse word. Don't use it.

Thanks! I think I'd move toward an AF ablation before I'd move to any other classes of AAR. Drugs were always intended as a temporary stop-gap to buy time/let things calm down, from my perspective!

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kbog
Yes, flec is usually prescribed BID, but I had noticed a pattern of my heart trying to go into AF in the last several hours before I was supposed to take the next dose, so I dug into the prescribing information and looked at studies at length, only to see that in some rare cases, a patient needed TID dosing for adequate control of symptoms. Also, that children above infant age and under 16 metabolize flec so quickly that they also needed (in one particular study of trough/peak serum concentration of flec) to use 8-hour dosing as well. It definitely has worked well for me, and my conclusion is that I metabolize it more quickly than the average adult. (I had to really state my case in order to get the doc to prescribe it TID, because they just want to do everything per standard practice/guidelines.)

There are "long acting" versions of flecainide, to take once a day...

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Pompon

There are "long acting" versions of flecainide, to take once a day...

Yes! The brand-name drug, Tambocor, had an XL variant that was a sustained release. I have no idea whether this is a recent development, but Tambocor is not available where I live. It may be no longer manufactured?

Do you have experience to the contrary? Thanks so much, Pompon.

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kbog


There are "long acting" versions of flecainide, to take once a day...

Yes! The brand-name drug, Tambocor, had an XL variant that was a sustained release. I have no idea whether this is a recent development, but Tambocor is not available where I live. It may be no longer manufactured?

Do you have experience to the contrary? Thanks so much, Pompon.

I'm in Belgium. Here we have the Apocard "retard' in 100; 150 or 200 mg versions. I've used the 150mg for a while and I still take it from time to time. Swallowing it in the evening has some benefit over the generic flecainide, lowering the chances to get afib in the very early morning. But waiting 24h to take the next dose is long enough to allow the return of premature beats (and the risk of afib) in the afternoon. I guess I'm cleaning the drug a bit too soon.
OTOH, taking a 200mg version is really too much for me. I'm allowed taking 2*50mg flecainide a day, more is dangerous. Of course, it's me ; but I'd say the long acting versions may be useful.

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kbog


I'm really looking for advice on how to manage my cutback of flec... right now I'm taking 100 mg three times a day. Do I cut back to 100 mg two times a day, or 75 mg three times a day, or ...? Whatever I do, I'll stay on the new dosage for at least a week before I cut back further, as I've learned from my own experience that it takes a while for serum levels to normalize.

Karen,

Given what you've said, in your shoes,I'd get a pill cutter to do what I wanted, then I'd drop to 75mg 3x a day, but I'd do it for a day on one dose, the next one two then three. Maybe even space out the steps by adding an extra day in between drops. Once I was at 75 3x/day, I'd stay there, maybe longer than a week and make sure everything was stable, then repeat.

George