drugs Tikosyn and Flecinide

If you had a choice between taking Tikosyn or Flecinide which would be your choice? I guess they both require a 3 day hospital stay and they both can have some nasty side affects.

Liz

Personally, I would choose Tikosyn because flecainide requires you to take a beta blocker with it and I despise beta blockers. But the more logical choice for most people would be flecainide. It's safer, cheaper, we have decades of experience with it, and it does not require a hospital stay. If you're reading something that says it does, that's the original FDA recommendation from the early 1980s when it was first introduced. Cardiologists don't require that anymore except perhaps for a few unusual patients with special concerns.

Just curious why you despise Beta Blockers which are used more widely for anything from high BP to PVCs, vs a black box warning med?

Is it true that flecainide requires a beta blocker to be taken with it? My EP gave me a prescription to take 50 mg and then another 50 mg 8 hours later if I happen to have a long attack. He didn't want to do the higher pill-in-pocket dosage because I have a slow HR (in the 40's), and at the same time did not prescribe a beta blocker. Wouldn't a slow HR tend to increase the risk of one-to-one conduction? Or would the latter not be so serious because during afib my HR spikes at most to 100 or 110. I haven't taken it as of yet.

Carey:

Thanks, the EP that I started seeing at U of M mentioned Tikosyn which requires me to spend 3 days in the hospital. I would rather not have to do that, I thought I have read on here that Flecainide required a stay at the hospital. So you have to take a beta blocker every time you take Flecainide? I wonder what would the mg. be, I don't like beta blockers, so maybe my best bet would be to go along with what my EP has suggested. It is just reading the side effects of these drugs that put me off.

Liz

HWK.

I don't like Beta Blockers because when I first got Afib, the doctor put me on a Beta Blocker, (I don't think I even had a high heart rate). After few weeks on it I was so tried I could hardly walk very far (that was 20 years ago), I felt lousy. Then when coming out of AF my heart rate dropped to almost a flat line and I almost would black out. Went to an EP and I had to have a pacemaker put in, I saw his notes on my chart that said I had a first degree heart block, caused by the beta blocker. Since I have a pacer it probably doesn't matter but my heart rate never went over a hundred in AF, so that doctor that prescribed that beta blocker was negligent.

Liz

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hwkmn05
Just curious why you despise Beta Blockers which are used more widely for anything from high BP to PVCs, vs a black box warning med?

I'm one of those people who beta blockers just suck the life right out of. Major fatigue. They make me feel like I've got weights tied to my arms and legs. Just climbing a flight of stairs seems like an aerobic effort, and climbing a tough hill on a bike is almost impossible. So beta blockers are actually almost disabling for me. I'll take the 3-day hospital stay over feeling like that.

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safib
Is it true that flecainide requires a beta blocker to be taken with it?

It's not required per se, but it's true that most EPs will insist on it. The risk of 1:1 conduction is extremely low, especially if you only have afib rather than flutter, but if it does happen it could be fatal. I know what 1:1 feels like at 250, and I don't think I would survive it at 300.

I don't think a slow HR would increase the odds of 1:1. Rather the opposite. It's people who have flutter with a high ventricular rate who are at the highest risk, which is why I was forbidden from taking flecainide when I had my super fast flutter.

Elizabeth, if you take flecainide the EP will probably want you to take a rate control drug. If you don't like beta blockers he can substitute diltiazem.

Carey:

My heart rate even in AF right now is usually in the lower 60s I don't want or need a rate control drug, so I guess it will be Tikosyn, so thanks to everyone.

Liz

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Elizabeth
Carey:

My heart rate even in AF right now is usually in the lower 60s I don't want or need a rate control drug, so I guess it will be Tikosyn, so thanks to everyone.

Liz

Liz,

I'd discuss your concerns and all your options with your EP and flesh out all the options. You took propafenone for years and it has beta blocking characteristics. Not saying you should take the BB, but should explore some rate control options with your doc. Perhaps he'd be willing to back off or give you a very low dose of a calcium channel blocker, in your circumstances.

{edit} I say this as flec has been a reliable med for me for over 15 years. Of course most of that time it was for PIP use, but others, like Mike F have also had long term good results with it. Because your afib rate is low, I think you are an excellent candidate for its use.

Best,
George



Edited 1 time(s). Last edit at 02/25/2020 09:45PM by GeorgeN.

I like Tenormin (atenolol). I started in 1987 for mitral valve prolapse. It calmed me. I took 50mg once a day at night before going to sleep. I woke up refresh with energy.,my side effect from it was slowing my metabolism. I gained 70 pounds from 1987-2004. I was in Tenormin (brand) when I had my first AF. It did nothing to lower my 180s HR. I was seen by a newbie doctor, 3-4 days attending. She insisted I stop cold turkey Tenormin Because she felt Tenormin would mask AF. I was foolish to listen to her. Never stop cold turkey Tenormin. It was a dizzy and fainting six months until I resumed.

Flecainide for me didn’t require a hospital stay. However it’s a black box drug and be careful of the dosing. Every 12 hours, not breakfast and dinner. I ended up taking 3/day under the advice of an EP that resulted in me staying 3 days in cardiac icu from a flecainide overdose. GeorgeN quoted you must weigh at least 154 pounds to take 300mg within a 24 hour period. I weighed 122 at the time. I lost weight since but no EP should advise 300mg with that weight.

At the time in 9-2004 I was getting AF every other day. Once it was daily AF I started flecainide. It took 5 days to start working and I was AF free for 5 years until I was unable to keep food down. Then in 2014 during chemo. All in all it was a lifesaver until I almost died from it. My former cardiologist was against the drug and said after each visit I would drop dead with 200mg/day. My only side effects with flecainide was I was unable to sleep-I would stay up until 5am and then doze off during the day for 20 minute naps. I had to take a nightly sleeping pill. Small price for Nsr.,

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susan.d
GeorgeN quoted you must weigh at least 154 pounds to take 300mg within a 24 hour period. I weighed 122 at the time. I lost weight since but no EP should advise 300mg with that weight.

As I noted in another thread, my son-in-law recently started PIP flecainide. My daughter told me Friday that he'd dropped weight with some of the changes he'd made. When flecainide was initially prescribed in December, he was borderline on the weight, 154 pounds. He now weighs 140. I sent him a message that his flec limit was now 200 mg/day.

As to dosing, for the month or so that I took flec on a daily basis, I actually took the whole dose at night before bed, as that is when my episodes would happen. The standard idea is flec has a ~12 hour half life (there is actually a material range that varies between people) and you want a relatively constant serum level of flec (which will build up and level out as you take it for a while). I didn't worry about this because of when my episodes happened (early morning). Hence I accepted a variable serum level.

Any rhythm drug must be respected and used carefully and judiciously.

I've never used a BB when taking flec PIP (one was never prescribed). I'm not saying this is the best practice.

Susan:

You said you were AF free for 5 years, did you take Flec. during those 5 years? I wouldn't want to lay in bed not being able to sleep, I would rather just stay as I am---my AF is not bad now and all I take is Xaralto. Tennormin is the beta blocker that I was given years ago that caused me a 1st degree heart block, (25mg).

Liz

George, you took Flec. as a pill in the pocket---I wouldn't mind taking Flec if I could take it for a short time and then stop it and use it as a pill in the pocket. I don't think Propafenone has very much beta blocker in it, but I will say that I once split the 150mg. and added that to my regular dose of 150 mg. and it affected me greatly, I could hardly walk from room to room as I was so weak. I went to bed right away (I always took my propafenone before going to bed. So, I don't know if it was the beta blocker in it that affected me, but I do know that I have been affected by beta blockers.

Liz

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Elizabeth
Susan:

You said you were AF free for 5 years, did you take Flec. during those 5 years? I wouldn't want to lay in bed not being able to sleep, I would rather just stay as I am---my AF is not bad now and all I take is Xaralto. Tennormin is the beta blocker that I was given years ago that caused me a 1st degree heart block, (25mg).

Liz

I started Flecainide on 9-4-04 after getting AF for 3 months starting every other week to daily. Flecainide stopped AF in its tracks for 5 years. I got AF from throwing up for 3 weeks. I had 5 catscans and was hospitalized 3 weeks in 2009. After a endoscopy and colonoscopy, a biopsy found a sensitive to gluten and dairy. I had 3 celiac tests that didn’t catch it. I got AF after throwing up. After immediately becoming gluten free, I was in NSR until I threw up three years later, self converted. In 2014 chemo put me in AF, self converted in 40 minutes with a flecainide, Tenormin, 11oz of low sodium V8 and a Valium (my AF cocktail ). Flecainide continued to work steadily for a year-I threw up from paprika (part of my 152 allergies I found out). Self converted with cocktail within an hour. A year or 18 months later I threw up on cole slaw-cabbage, another self converted AF- I added it to my allergy list. 12 months +/- later i threw up eating cherries-AF self converted. In 2017 I started getting AF once or twice a year from the stress of my mom’s failing health. By 2018 I became a regular in cardio conversion once or twice a year. 3-2019 my mom died, weekly AF, weekly conversions. August I increased my flecainide with permission of EP-landed in icu-stopped flecainide. 9-19 had my ablation. No AF but PVCs.

I recommend getting a flecainide serum blood test-you draw blood exactly 11 hours after previous dose.

Ps-after stoping flecainide I slept like a baby. From 10-04 to 8-19 I took a sleeping pill and slept well from flecainide side effect. Small price for nsr.

I was on both flecanide and Ticosyn. The flecanide did require a beta blocker. However, when I was just using flcanide as a pip I was not on a beta blocker. I'm like Carey, the beta blockers make me miserable. Though right now I am on 25mg metoprolol and don't really have any ill affects on that low dose.

Carey, I do understand that about BBs tho I must admit the few times on a Toprolol med, my adherence was according to their effectiveness. The min of 25mg at bedtime only seemed to settle things down without fatigue. I was looking for a credible source, which escapes me other than a few older sites, that BBs destroy heart muscle eventually.

Elizabeth, Doctors do seem to prescribe based on a one size fits all at times. I have persisted with demanding the reason for any and all meds. The same goes for me with a low HR and prescriptions of BB's and I could never understand after my EP visit with an EKG walking out with a script for Diltiazem and Flecainide with a HR of 54. No one is infallible, but there are doctors who do take the time to listen before scripting. Seems as though you found one 20 years too late.

When my afib returned in December after 13 years being afib free, I started Toprol and Eliquis and very quickly I went on Flecainide and stopped the Toprol. The Flecainide slowed my heart rate while in afib, so no need for the Toprol.

After my January ablation, Eliquis only for one month, but after two weeks of breakthroughs, I went back on the Flecainide for two months. No issues with Flecainide and no required hospital stay. I will be off the Flecainide in a week and a half, then on nothing. After restarting the Flecainide, my heart has been steady as a rock for the last month. 100mg 2 X day.

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Elizabeth
Susan:

I wouldn't want to lay in bed not being able to sleep, I would rather just stay as I am---my AF is not bad now and all I take is Xaralto.

Liz

Just curious as to what is the downside of persistent/permanent Afib?

I know a couple of people who are in Afib 24/7. Apparently they are on ACs and it doesn't bother them. Is their heart being damaged and/or their life shortened?

I personally can't imagine being in Afib 24/7, but my only experience was when I was diagnosed. By the time I went to the ER, I was lightheaded and felt faint. I guess some of that could have been from anxiety of not knowing what was happening to me.

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hwkmn05
I was looking for a credible source, which escapes me other than a few older sites, that BBs destroy heart muscle eventually.

I don't believe that's true. After all, beta blockers are a mainstay of treatment for heart failure and heart attacks and proven to be lifesaving for those patients, and those are the people who can least afford loss of heart muscle. I think maybe what you remember reading was this? https://www.sciencedaily.com/releases/2009/11/091120111553.htm. But that study was never published in a major journal and no one appears to have replicated it since. It would be of major importance if true, so the lack of scientific attention suggests that the study and its results were less than credible.

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Elizabeth
I wouldn't mind taking Flec if I could take it for a short time and then stop it and use it as a pill in the pocket.

Liz, given your history of taking propafenone on a continuous basis to stay in NSR & then using a bigger dose to convert, I'm guessing you'd need to take any rhythm drug on an ongoing basis, unfortunately.

I would also think to have a ECV "hold" for any length of time, you'd need to start & get to steady state (in terms of serum level of the med) with a rhythm med before the procedure.

George:

Yes, I took Propafenone for many years, but I only took it at bedtime, that drug is supposed to be taken every 8 hours. My doctor said to take it only at bedtime as I got my episodes around 4:00 to 5:00 a.,m. I don't think that drug ever did much for me as I took it before bed and yet a few hours later I got AF, but I always converted on my own.

I will try one of those drugs and a cardioversion, if needed, I will see how I feel and how the drug affects me. If I have a problem, then I will just scrapt the drugs, except for Xaralto. As I said I don't even feel my AF now, I will see how I do when it is time for putting in my garden and all the work that goes with taking care of my yard. There are plenty of people that are in AF (and don't feel it) and just take a blood thinner and are fine. As far as I know those two men that are running for President are in AF and taking a blood thinner, I havn't read where they have had ablations.

An ablation burns holes in your heart and it can affect your Ejection Fraction, right now my Ejection Fraction is 65 so I am good in that respect,
and the market is up today, whoopee, Whoops it is down again.

Liz



Edited 1 time(s). Last edit at 02/26/2020 02:05PM by Elizabeth.

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Elizabeth
George:

Yes, I took Propafenone for many years, but I only took it at bedtime, that drug is supposed to be taken every 8 hours. My doctor said to take it only at bedtime as I got my episodes around 4:00 to 5:00 a.,m. I don't think that drug ever did much for me as I took it before bed and yet a few hours later I got AF, but I always converted on my own.

I will try one of those drugs and a cardioversion, if needed, I will see how I feel and how the drug affects me. If I have a problem, then I will just scrapt the drugs, except for Xaralto. As I said I don't even feel my AF now, I will see how I do when it is time for putting in my garden and all the work that goes with taking care of my yard. There are plenty of people that are in AF (and don't feel it) and just take a blood thinner and are fine. As far as I know those two men that are running for President are in AF and taking a blood thinner, I havn't read where they have had ablations.

An ablation burns holes in your heart and it can affect your Ejection Fraction, right now my Ejection Fraction is 65 so I am good in that respect,
and the market is up today, whoopee, Whoops it is down again.

Liz

I read somewhere that Biden's Afib is "persistent." Don't know about Bloomberg.

Kate:

Are you saying persistent or is it permanent? So if it is persistent he then must be on other drugs and gets episodes of AF.

L

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Elizabeth
Kate:

Are you saying persistent or is it permanent? So if it is persistent he then must be on other drugs and gets episodes of AF.

L

[apnews.com]

"Since 2003, Biden has had episodes of atrial fibrillation, a type of irregular heartbeat that’s potentially serious but treatable. His doctor now describes the atrial fibrillation as “persistent.” O’Connor cited a list of tests that show the candidate’s heart is functioning normally and his only needed care is a blood thinner to prevent the most worrisome risk, blood clots or stroke"

IThis article goes into more detail: I found it interesting because my Afib was also diagnosed a few months after I had my gallbladder out.

[www.politico.com]

Carey, yep thats the only one Ive seen. I would be surprised if it were true. It certainly isnt logical to believe it destroys heart muscle when its action is to reduce the HR and lower BP.

I've been considering using Flecainide PIP. I got scared off from using it previously because my afib episodes usually involve periods of aflutter at about 155bpm, especially when I am nearing conversion back to NSR (my fear is of the 2-1 conversion flipping to a 1-1 conversion - I recall reading it was more likely if you are already in flutter but don't recall whether that was antecdotal or based on some type of study).
I have absolutely no idea how to assess that fear (though I've tried). Does anyone know of research or studies pointing to how frequently Flecainide has this dangerous side-effect? Or how much, if at all, lower doses reduce the chances? Or whether it is more dangerous when you are in a flutter?
Any clarification on this would be really appreciated. Antecdotes are fine, but we all know their limits. My doc recently prescribed it for me, and I'm thinking of using 75mg PIP followed by 75 more in about 90 minutes with no conversion next time I have an episode
Thanks, Ralph

1:1 flutter caused by flecainide is very rare. It's so rare that some EPs don't think it's necessary to take a beta blocker with flecainide. But if you are taking a beta blocker (or diltiazem) with it, you really don't need to worry about it.

I used flecainide as a PIP with flutter that was a lot faster than 155. EP's instructions were metoprolol first then flecainide 20 minutes later. Flec was pretty good at preventing both afib and flutter, but unfortunately it never worked for me as a PIP.

Thanks Carey. I am likely to try it next time - I'll take some Diltiazem first, and I'd try it at the low dose I mentioned out of an abundance of caution. But I'd appreciate any other input that is potentially out there

I don't think a low dose is likely to achieve the PIP effects you're looking for but by all means approach it as carefully as you feel comfortable with. The general idea behind PIP is to hit it with a high dose as early as you can. As long as you're taking a rate control drug with it I don't think you have much to worry about.

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Ralph
My doc recently prescribed it for me, and I'm thinking of using 75mg PIP followed by 75 more in about 90 minutes with no conversion next time I have an episode

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Carey
I don't think a low dose is likely to achieve the PIP effects you're looking for but by all means approach it as carefully as you feel comfortable with. The general idea behind PIP is to hit it with a high dose as early as you can. As long as you're taking a rate control drug with it I don't think you have much to worry about.

As Carey suggests, I've always done (for over 15 years) the hit it hard and early approach - even chewing the flec for faster absorption (300 mg, in my case & being over 154 pounds (70 Kg). My son-in-law was prescribed the step up approach - 25 mg metoprolol followed in an hour by 100 mg flec and then another 100 mg flec if not converted. 200 mg is his max as he weighs 140 pounds. The one and only time he tried it, the first 100 mg flec converted him. Up until very recently, he's converted all of his episodes on his own and in fairly short order. His episodes tend to be fairly high rate (in the upper 100's) and symptomatic. Over the years, a number of people have posted about using this kind of dosing, many times at 100 mg steps, with success.

I've also taken to ingesting a loading dose of magnesium in powder form (again for fast absorption). Usually citrate or dimagnesium malate. That seems to shorten the conversion time. My SIL does this, too.

As you suggest, n=1 only goes so far.

I like trying to find the minimum threshold for medications to work for me - it is typically a lot lower than what is recommended. I'd be fine with Flec not working the first time bc I dosed too low. But if it turns out it is enough, then great. I'll let you all know what happens if I take it, and will also report on my ongoing experiment with Steve Carr's low calcium high vitamin D regimen at that time.

Someone posted about the risk of 1:1 flutter from Flecainide about a year ago saying that there was evidence that people were still getting 1:1 conduction even when using a BB.

I would titrate up slowly. I have adverse effects from Flec from single doses higher than 200mg, I have tried just taking 100mg at the onset of an episode, and then 100mg every 12 hours thereafter. I have converted 4-5 times using this strategy, converting at around 36-48 hours. This works part of the time for me.