Flecianide and Diltiazem?: I've been on... - Atrial Fibrillati...

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Flecianide and Diltiazem?

sdweller profile image
43 Replies

I've been on Flecainide for almost 5 years now, it has kept me in NSR the entire time, and I've felt very little side effects if any. My new EP wants me to add Diltiazem because of potentially bad side effect of Flecainide.... I think that or Metropolol can both reduce the risk of this happening when taken with the Flec. I'm just wondering is everyone else on Flecainide taking one or the other? How does it make you feel... does the Diltiazem making anyone feel more tired? I REALLY don't want to be on ANOTHER drug, but the side effetce is pretty bad, although very rare?

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43 Replies
mjames1 profile image
mjames1

Taking a nodal blocking agent like Diltiazem with Flecainide is based on a pretty old study that many ep's don't feel is relevant. So some ep's prescribe it and some don't. Your body, your risk and your side effects snd quality of life. So do your own research and make your own decision and ideally find an ep who will respect that decision.

Jim

sdweller profile image
sdweller in reply tomjames1

Thanks Jim... was this "old study" relating to the 1:1 conduction issue that can happen as a bad side effect when on Flecainide?

mjames1 profile image
mjames1 in reply tosdweller

Yes. I believe the study showed that it was a rare occurrence. However, the study population was quite limited and non randomized and a lot of a ep's don't give it much attention. But I would say the majority still do..

Jim

mike1961 profile image
mike1961 in reply tomjames1

HI mj1, can you please remind me - do you take daily Flecainide ? Is your AF vagal or adrenergic or a mixture ? My understanding is that Flecainide works better for vagal and the vagal group are less at risk from 1:1 flutter anyway. Hope all is going good for you over there in the US!

mjames1 profile image
mjames1 in reply tomike1961

I've taken both daily and PIP Flecainide, depending on frequency of episodes. Since my ablation a couple of years ago, I've been in normal rhythm, but I still keep some Flecainide in my pocket just in case.

I'm sure my atrial fibrillation is vagal to some extent, but probably a mix like with most. I also had atrial flutter at the same time, I did air on the side of caution and took a low dose of diltiazem with my flecainide. We also suspected that my heart may not be 100% structurally sound so that also played into taking some diltiazem.

Jim

sdweller profile image
sdweller in reply tomjames1

Can I ask what was the low dose of Diltiazem you took?

mjames1 profile image
mjames1 in reply tosdweller

120 mg/day of Diltiazem with 50mg Flec. 2x/day. When I dropped down to 25 mg of Flec 2xday, I stopped the Diltiazem. This is not a recommendation, but just what I did.

Jim

sdweller profile image
sdweller in reply tomjames1

That is very interesting... I have actually thought about trying 25mg twice a day to see if it holds me in NSR... I feel there is a good chance it will, I have not been in afib or had any issues at all since my ablation almost 5 years ago on the current 50mg twice a day.

mjames1 profile image
mjames1 in reply tosdweller

You may not need any Flec then?

Jim

sdweller profile image
sdweller in reply tomjames1

Yes… it is possible. My EP wants me to try to stop it and see. I went into Afib about 2 weeks after my last ablation… so went on the Flec… dropped dosage to 50mg twice daily and have never gone off again… again been almost 5 years now and no Afib. So trying to get the courage to try getting off again!

bassets profile image
bassets in reply tosdweller

I had the same after my ablation and am taking the same dose, but I'm still taking dilitiazem too. I tried a higher dose of flecainide without dilitiazem and was ill;.for a month without it.

secondtry profile image
secondtry

As mentioned I have taken just Flec (200mgs) for many years. I have queried this several times with my cardiologist and he maintains I don't need (in my circumstances) a BB/CB as 'it would make me feel unwell'.

sdweller profile image
sdweller in reply tosecondtry

Glad to hear this… what’s interesting for me is my old EP who started me on the Flecainide never mentioned taking anything with it… but we moved and my new EP thinks differently, but he said he “understands my reasoning and doesn’t disagree with the low risk”. But he wanted me to understand that the 1:1 thing IS not a good thing if it were to happen, which I do indeed understand. My Afib has always been of the Vagal variety, which also lowers the risk theoretically… and my heart is structurally sound also.

OzJames profile image
OzJames

I’ve been on Flecanide for 12 months, but a very low dose and will probably tweak it up to 25mg twice a day I was on 20mg. I was also on Metopropol again a low dose of 25mg but it made me a bit dopey as my HR at rest without drugs is around 60-65 with the Metopropol it can drop into the 40’s. The cardiologist agreed to drop it to 12mg and at that I have no side effects at all and carry on a normal life. I’ve had 1 short bout of AF which was cardioverted in that time. There are others on this forum who only take Flecainide. I think the side effects can occur if there are structural issues with your heart.

In my case the cardiologist recommended the metoprolol for reducing the adrenaline spike that may occur before an AF episode and thus preventing it

mike1961 profile image
mike1961

My EP (at Royal Papworth) prefers me on a small (10mg) dose of propranolol with each of my two x 100mg per day of Flecainide. Just to be on the safe side. 10mg is the smallest dose of propranolol available. I had a RA typical flutter line done as part of my last/second ablation, so presumably the BB is to prevent the chance of any 1:1 atypical LA flutter. As you all know, there are two broad categories of afibbers - those who get it predominantly at rest - typically nocturnal (vagal) - and those who get it whilst up and around typically during the day (adrenergic) and my reading over the years indicates that it is the latter group that are more at risk of 1:1 flutter occurring.

Buffafly profile image
Buffafly

I took Propafenone - like Flecainide but with a nodal blocker included for years until the day my heart went bonkers and I ended up in hospital with an MI caused by coronary artery spasm. I was promptly put on Diltiazem as well and yes, it did make me feel tired but it was a big dose. I’m now on diltiazem alone and that’s ok. You can only try it and see.

beach_bum profile image
beach_bum

I’m not on flecinide, never have been, but was briefly on meteopol and it left me weak and breathless, switched to diltiazem and all good.

Vonnegut profile image
Vonnegut

I am 81 and have been taking Flecainide for some time since soon after my PAF was finally diagnosed when the lowest dose of Bisoprolol proved too much for me to take daily. At first I took it as a PiP when episodes occurred when it always stopped them in a few hours ( all monitored on my Kardia). Now that I take it regularly it has virtually put an end to episodes and I have even been able to reduce the dose. Encouragingly, even when I ran out of them recently and was without any for two and a half days, my heart remained in NSR.

Of course, we know that we are all different and hope you find what works for you.

sdweller profile image
sdweller in reply toVonnegut

… and you are not taking Diltiazem or Metropolol with it?

Vonnegut profile image
Vonnegut in reply tosdweller

No- what sort of drugs are they? I did agree to take a daily low dose statin but I guess that’s just a box ticking thing because of my age and possibly an inherited thing.

sdweller profile image
sdweller in reply toVonnegut

They are beta blockers, sometimes taken with the Flecainide.

Vonnegut profile image
Vonnegut in reply tosdweller

As I’ve mentioned here before the EP who first prescribed Flecainide for me just told me to add one of my 1.25 mg Bisoprolol if my heart rate exceeded 140 bpm twenty minutes after taking the 100mg Flecainide which it rarely did (all followed with the Kardia he introduced me to having ,with the smartphone I hadn’t had previously!) I now take Flecainde daily ( 50mg am and 100mg pm) and it has virtually put an end to episodes and as I’ve mentioned here before, my heart continued in NSR recently for the few days between running out of the drugs and getting new supplies!

Cathiker1 profile image
Cathiker1

I have had paroxysmal AFIB for 7 years. Initially I was on both Flecainide and Diltiazem but the Diltiazem dropped my blood pressure too much and I would get dizzy. I only take it now PIP if I feel heart palps.

babs1234 profile image
babs1234

personally if the side effects aren’t that bad no way would I take another drug

Pommerania78 profile image
Pommerania78

Why do you think Flecainide has been so successful with you and not so successful with others? Thanks.

sdweller profile image
sdweller in reply toPommerania78

I have no idea. I always hear that some cannot tolerate Flecainide, it makes them feel bad or some other issue…and some with other structural heart issues cannot take it at all. I’m just very thankful I can take it because it’s so effective for me. I go to the gym 4 days a week, hike the local trails, no issues at all.

mjames1 profile image
mjames1 in reply toPommerania78

I would think that Flecainide is successful in the majority of people. If you're getting feedback here to the contrary, it's probably because the majority of the people who successfully remain in normal rhythm with Flecainide may not be posting here.

Jim

DennisVA profile image
DennisVA

If you show zero symptoms of whatever concerns your doctor about flec, why in hell would you start a new drug to counter something you dont even have?

Floridamainecoon profile image
Floridamainecoon

I take 120 mg Diltiazam every day and have absolutely mo issues. I am not tired and am very active. My afib episodes rare. My ablation is scheduled march 4. Very happy with this drug.

Bikedennis profile image
Bikedennis

No issues or side effects here.

cloudday profile image
cloudday

sdweller, you asked me before when I was inquiring about how to wean off flecainide if I was taking Diltiazem with it. My answer was no. I want to share with you the medications I personally took for AF. After a year with, it finally showed on an EKG. I immediately had a visit with an electrophysiologist who put me on Eliquis, Flecainide and Metoprolol that I stopped last two on my own because Flecainide was making my heart rate higher and higher, and the Metoprolol made my blood pressure to increase. When I informed his NP, she got mad at me. Did not suggest alternative medications. She just told me not to comeback until I had my thyroid, checked and a sleep apnea test. In my mind I said, yes, I'll check on those two, but I am not coming back here. I like to be proactive on my health care. If a doctor does not work with me on solutions and seems to be in a hurry, I'll go to another one who will. Then I found a nice electrophysiologist who put me temporarily on Amiodarone 200 mg 2x daily while waiting for insurance approval for ablation. I had the ablation which did not work as expected. So, I was taking 100 mg 2x daily. Then, my ophthalmologist informed that the Amiodarone was causing damage to my eyes. So, I was put back on Flecainide which to my surprise it worked really well. In one year, I had only to AF episodes lasting 2 hours each. All of the sudden the doctor prescribed Metoprolol. Metoprolol made me feel terrible and made me gain undesired weight. My blood pressure and heart rate went to low; I could not walk because I got out of breath real fast. I was a wreck. I ask the doctor to change it for me and he answered why "it is a wonderful medication". So, I stopped it on my own without his consent. I felt better without it. Then last November I had the Wolf Mini Maze in Texas. I was immediately off Eliquis (I had left atria occlusion) and Valsartan, my blood pressure was so low after surgery. I was left on Flecainide so that the heart would be calm during the blanking period. When I wean off it, I'll, God willing, confirm that it was successful besides I have total confidence on Dr. Wolf.

All human beings are different, and our bodies react differently without doubt. My body is extremely sensitive to all medications.

sdweller profile image
sdweller in reply tocloudday

That is very interesting... thanks for sharing! The Wold Mini Maze is supposaed to be excellent, good luck here's to wishing it works!!!

cloudday profile image
cloudday in reply tosdweller

Thank you very much.

Ppiman profile image
Ppiman

Later studies are much more favourable towards flecainide for AF but taking a beta blocker at a low dose shouldn't cause you any side effects, or at least it is worth trying. I think the risk with flecainide is of ventricular arrhythmias but recent studies I have seen suggest these are most unusual and, given your safe history with it, I doubt you would suffer. It might be worth asking for a 2 or 4 week holder monitor though to see if there are any rogue beats coming from the flecainide?

Steve

sdweller profile image
sdweller in reply toPpiman

Very rational thoughts... yes the risk is 1:1 conduction on the ventricles... flutter. It is very bad if it happens, but very rare. But I am getting a good amount of feedback that the Diltiazem has very little side effects, and those can subside over time also if any do occur. It's just always better to not be on all these heart meds except if absolutley necessary. And for 4 1/2 years it's worked so beautifully! Thanks for the solid suggestions.

sdweller profile image
sdweller in reply toPpiman

I'm curious why are you asking about "rogue beats"? My heart ocasionally skips a couple beats, pretty sure ectopics.. or maybe a PAC. I'm getting my Apple Watch tomorrow so I can monitor when I sleep etc. Can "rogue beats" lead to the 1:1?

Ppiman profile image
Ppiman in reply tosdweller

Sorry, no, I didn't mean anything special from the phrase. It's one that gets used on the forum and in articles I have read online occasionally. From those, I gather that a very few people taking flecainide can have occasional runs of "rogue" ventricular beats which have the possibility of being dangerous if not treated quickly.

"1:1 conduction" refers differently, I think, to when atrial flutter (AFl) occurs - which flecainide can cause, but rarely. Taking a beta blocker or similar alongside flecainide prevents this occurring, it seems. I had AFl in 2019 (not caused by flecainide). AFl causes the atrium to beat at 300bpm, but the AV node normally applies the brakes to this, bringing the heart to beat at - often - 3:1 "conduction", i.e. 100bpm. Flecainide can block the AV node from doing this, it seems, and allow 1:1 conduction, i.e. a dangerous rate of 300bpm, which would need hospital treatment.

Steve

Spoiler profile image
Spoiler

I took flecainide in various doses over a 7 year period, I have always taken metoprolol 25 mg twice a day with it, I also had Cardizem ( calcium channel blocker) prn if I went into a afib or high heart rate. Metoprolol never really helped me as a PRN, but the cardizem did. Currently after my 3rd ablatiom almost 2 years ago at the Cleveland Clinic, no flecainide or any antiarrhymic… praise God. I only take metoprolol and Eliquis. I have to remain on the blood thinner due to a very enlarged left Atrium. I still have Cardizem as a PRN if I need it. No afib so far. I will say for me, 8 months before my last surgery, I was in afib 100% and was on a 240 mg of Cardizem. It affected my muscles, aching and weak, but under the circumstances I had no choice. The daily of metoprolol I do fine with. Hope this helps.

Cleveland Clinic #1 heart center, would not blink an eye in making a decision for their expertise. I live in Arkansas and we fly there.

sdweller profile image
sdweller in reply toSpoiler

Smart making the effort to go to the Cleveland Clinic! Thank you for the info

Budken profile image
Budken

When I started Flecainide in 2011 I was immediately taken off Diltiazem. I was put on a low dose of Metoprolol because my Cardiologist at the time, said " It makes the flecainide work better" I had terrible side effects with it. Another Cardiologist told me to stop taking it, as it was causing my problems ( Lot's of PVC's and weekly outbreaks of Afib ) Since stopping it ( it was a roller coaster ride though ) I have had no problems. That is going on seven years now!

sdweller profile image
sdweller in reply toBudken

So you're on Flecainide, but not Diltiazem or Metoprolol?

Budken profile image
Budken

Yes only flecainide, and they also reduced the dose from 100mg twice daily, to 50mg twice daily. I might add, that I have never needed to get an ablation. I have been fine only with medication.

birdpie profile image
birdpie

I am on flecinaide and metroprol but wasn't told that one balances the other. Sadly it appears that the flecinaid isn't working anymore and I have a fib daily since early January. I do have an appointment with my care team soon to decide what is next.

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