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Flecainide maintenance dose

Profound15 profile image
29 Replies

I’m now on 50mg of flec twice a day as well as 1.25mg of bisoprolol. It’s been fine with no noticeable side effects but was hoping that the ectopics I was getting frequently before the maintenance dose would disappear after. Whilst they do seem to have reduced in number I still get milder ones most days. Could anyone who is on the maintenance dose advise if they still get ectopics please. What dose are you on as maybe increasing the amount of flecainide would help stop them all together. The good news is that so far, after three months I’ve not had any afib which is great. Thank you in advance.

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Profound15
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29 Replies
jeanjeannie50 profile image
jeanjeannie50

I take 75mg Flec in the morning and 50mg at night alongside a small dose of Metoprolol 12.5mg. I'm completely unaware of anything my heart is doing.

Jean

Profound15 profile image
Profound15 in reply to jeanjeannie50

Did you get ectopics before please Jean

jeanjeannie50 profile image
jeanjeannie50 in reply to Profound15

I've had AF for almost 16 years. For the last 15 months I've been in it constantly. I get extra beats, but am rarely aware of them. I've found that my heart rate is best ignored. If I hone in to what its doing it almost feeds the condition and worsens.

Jean

Profound15 profile image
Profound15 in reply to jeanjeannie50

Yes I agree. It can take over you life if you let it. It’s the ectopics that bother me at the moment although I’ve coped with them for almost 40 years. I don’t seem to have the same mental strength now that I’m retired

secondtry profile image
secondtry in reply to Profound15

You might want to try CoQ10 starting on 100mgs/day, and then possibly 200mgs if no improvement, from a reputable supplier, I use Lamberts.

dmac4646 profile image
dmac4646 in reply to jeanjeannie50

Jean - I take that Flec provides some improvement in symptomS?

Spoiler profile image
Spoiler

I have been on anything from 50mg twice daily to 150mg twice daily. I started on 50 twice daily for 7 months, I did awesome on that dose and my EP took me off because on a stress test I went into vtach (never had vtach) which he said the drug caused it, at That point he discontinued it. I wanted to stay on it. I later had a ablation from a different EP ( out of state) and he put me back on the same dose, I did well. Three months after the ablation it was dc and I went into afib. So, my local EP put me on a higher dose 100 mg, worked a while, then it failed, so it was increased to 150 twice daily. I took 150 twice daily for 13 months, all of a sudden I noticed every time I took it about 1 1/2 to 4 hours after taking it, I was going into flutter or something at a high rate (145-160) my metoprolol wld not touch the rate control at all. My EP told me the heart modeling can change ...I was in the hospital twice within 2 weeks, at that point we reduced it to 75 twice daily, I did fine for 6 months, then here we go again with episodes (high uncontrollable rates for 1-2 hours) not as severe, but daily after taking the drug. So I am currently back on the 50 twice a day as of now, no episodes in the last 8 days. It has been a guessing game for me, finding the best dosage to not cause more rhythm problems. Normally I had to be DC cardioverted before I was on flecainide. I have been cardioverted 17 times in 6 years. Currently I am back to the 50mg, it is a daily challenge hoping I stay in NSR. We each are so very different and our stories can be long... I have tried to become more observant to my reactions to figure out what is going on, I refuse to run to ER, I detest going! Flecainide and metoprolol combined have been the only drugs that have really worked for me, but being open minded to change the dosage has been a challenge. Who knows? Even my EP does not know why we have had to, other than saying the modeling of the heart can change. Believe me, I can feel for anyone that has difficulty controlling any rhythm problem. My father had afib, but his was low rate and he was unaware of it. The very best to you, Don't know if this helps.

Profound15 profile image
Profound15 in reply to Spoiler

Thanks Spoiler. Do you get ectopics whilst on flecainide please

Spoiler profile image
Spoiler in reply to Profound15

I had flutter, ectopics, and afib. It reverted back to NSR, which never happened without flecainde before. Each time the dosage adjustments resolved the problem. Currently I am doing well, but I do follow all recommended guidelines. I find keeping notes in my phone helps with evaluating my meds, being hydrated, getting rest, and less work hours have all been factors for me. I had to slow down and analyze it all. I made notations if I was having ectopics/afib/flutter 1 1/2-4 hours after taking the medication. That time frame was 95% of when I had issues. My EP adjusted MG either up or down. I always assumed if a drug was not working, you needed more, the fact is, it is trial and error my EP told me. Work with your Dr and I suggest making notations if anything seems to affect the frequency or duration of them. Do you feel bad when they occur?

Profound15 profile image
Profound15 in reply to Spoiler

Thank you

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply to Spoiler

To get off the medicine merry-go-round .... have you considered another possible ablation by a world-class EP?

I have a somewhat aggressive case. I'm 67. Dr. Natale, one of the world's best EP's, heads up a 14 EP group in Austin, Texas and performed my recent 4th ablation. I think he did a stint at the Cleveland Clinic, too.

Might be worth a consult.

Spoiler profile image
Spoiler in reply to The_Lord_is_with_Us

I have certainly considered it and the Dr at cleveland clinic wanted to do another one, my EP here in AR wanted me to wait until my meds wld not work for me. The last 9 months has been something else with changing dosage amounts again and again, with Covid Going on, I have not flown or traveled at all. I am waiting on my first vaccination. How has your 4th ablation worked out? What type ablation did you have? I actually had one PVI ablation, but 2 surgeries. The first ablation I developed cardiac tamponade and landed in icu, so they only got half finished. I went back 6 months later to finish the Right pvi.

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply to Spoiler

Give Dr. Natale's office a call ... with your history you need the best. He thrives on a challenge.

4th ablation on OCT 23. Had tachycardia with AFIB. Both now gone. Smooth recovery. Only a flew blips and 1 second of rapid beats a couple of times. 3rd ablation gave me 10 years of normalcy. Then, it came back in AUG 2020.

It often takes 2 ablations to get high success rate. EP's know this.

My first ablation was for atrial Flutter, so I don't count that against AFIB.

Natale's former partner in San Francisco, Dr. Steven Hao, did 2 AFIB ablations on me in 2011. He isolated Pulmonary Veins and other cleanup in common areas.

This time, Dr. Natale isolated the left atrium Coronary Sinus ...... then ablated the Left Atrium Appendage LAA (he is one of the few in the world who has perfected ablation in this tissue-paper thin area).

I go down in APR or MAY to get images of his work analyzed and see if more minor ablation needs to be performed .... or a Watchman Device installed. If the LAA was not damaged by previous ablation and atrium is quiet, I could be sent home cured with no further intervention needed. And ...... no coagulation or meds necessary.

BTW .... I flew down to Los Angeles from eastern Washington to have my procedure in the middle of C-19. I was worried, but never a problem ..... Came home happy and virus free.

Good Luck! to you . . .

cuore profile image
cuore in reply to The_Lord_is_with_Us

Am I reading your post correctly --- you will not need anti-coagulation drugs?

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply to cuore

That's right ..... EP's chief assistant said I can toss them in the bin.

If the ablation was successful, no drugs. If they install a Watchman Device, then, also, no drugs.

The Watchman was developed specifically for those who don't want to (or cannot) take anticoagulation drugs.

It all comes down to how the Left Atrial Appendage is functioning (it's a known stroke producing area).

cuore profile image
cuore in reply to The_Lord_is_with_Us

It seems as if the Americans are not prescribing anti-coagulation if one remains in sinus rhythm after an ablation. I believe Steve S. Ryan who runs an AF blog had an ablation about a year ago (after 20 years AF free) and also is not on anti-coagulation. This forum (representing UK) appears to advocate that one needs to stay on anti-coagulation even if one remains in sinus after an ablation. I do not know about the rest of Europe or elsewhere. So the jury is out.

Yes, the purpose of a Watchman is to be off anti-coagulation drugs. I believe it is the Israelis who have done research on the left atrial appendage and its contribution in providing cells (stem cells?) for heart repair. However, the study is still in its infancy.

So, after a year and three quarter of sinus rhythm after my third ablation, I am still on Propafenone (150mg x 2) which I have an email in today to stop, and I am still taking 5mg x 2 Eliquis with request for a refill. I will now ask the position Canada takes for refilling. Dr. Natale is a renown EP, so his position is most valuable.

cuore profile image
cuore in reply to Spoiler

In my case, my EP said, "We know that drugs will hardly fix the problem."

Amy2805 profile image
Amy2805

Hi,I’m glad to read this I am on Bisoprolol 1.25mg and 100mg Flecainide twice a day. It has reduced my SVT and luckily I haven’t had any AF episodes. But I am getting a lot of eptopics. Sometimes every few minutes for over an hour. I had the odd one before the drugs but they are worse now.

Rostom profile image
Rostom

I am on a dose of 100mg of Flecainide and have been for many years. I do have ectopics which to me present as fast flutterings.

I was told that I have PAT, Paroxysmal Atrial Tachycardia and that the condition is not a 'serious' one, so try not to worry about it.

I had episodes of crushing upper arm pain, diagnosed as Unstable Angina and now take Isosorbide Mononitrate 30g daily which has stopped the pain.

I had an Angiogram which showed no narrowing of arteries plus a Pressure Wire test which was 'inconclusive' and that my case is 'challenging'! I have a follow up telephone consultation soon so may learn more.

The ectopics I continue to have do not impact in any major way so I try to ignore them.

If you are really concerned, please go back to your doctor.

ILowe profile image
ILowe

Yes, I still get ectopics. Yes, I regard this as normal and desirable, though there are people I respect greatly who also have good reasons and might not agree with me. Let me explain.

First, changing the dosage really should be done by the doctors, so if you want to change the dosage, please phone the doctor. I know this is sometimes hard to do. Ideally, phone the doctor who put you on flecainide.

You have to understand that flecainide is tricky stuff to dose right. Too little is not enough, and too much can provoke rhythm problems. Complicating matters is the way our bodies change, so you can get it right for a while, then need to change. For instance, my doctor told me I probably needed to reduce flecainide when I went on holiday and in seasons of less stress at work.

For a discussion of the biological purpose of irregularities see this thread healthunlocked.com/afassoci...

So, I like to dose it so that I get a few ectopics.

Profound15 profile image
Profound15 in reply to ILowe

Thanks very much for your input very helpful. I think I need to try and ignore any palpitations that I get but it’s easier said than done

Spoiler profile image
Spoiler in reply to ILowe

It is crazy how the dosage has changed for me

ILowe profile image
ILowe in reply to Spoiler

My sympathies with dose changing. The trouble is if you are in the middle of the dose range and problems start. Do you increase the dosage or do you decrease it? I have been in the fortunate position abroad where I decided that for myself and have developed my own principles of action. Trial and error yes, but with good reasons. How important it is with a doctor to establish and keep a good relationship and to get them to explain what they are doing, to think aloud.

Spoiler profile image
Spoiler in reply to ILowe

YES!

tunybgur profile image
tunybgur

I'm on about the same dose of both meds, plus a few others. I have slight arrhythmia all the time, but not AF any more.

I can only see it with a 30s trace with my HealForce PC80B, I get 4 or 5 normal beats followed by a quicker double beat, and it's been like that for years, but I can't feel it.

My main concern is slow heartbeat, resting pulse about 45 and can't get it much over 105 even when working hard on my rower. I'm 73 and feel pretty good most of the time.

I wouldn't worry about a few ectopics, just get on with life.

Good luck

Profound15 profile image
Profound15 in reply to tunybgur

I agree thanks

jwsonoma profile image
jwsonoma

Started on 50mg Flec 2x and had an a-fib break through so I went to75mg2x and have had no probs for several years. I take 1.25 mg Bis.

I also pretty much stopped drinking and dropped my BMI to 22. My Doc told me I may never have another episode with those life style changes. Also plant based diet.

As aFib is progressive and I don't want another prolonged event I still carry an extra 150 mg Flex and 5 mg Bis as PIP keeping the 300mg per day max for Flec in mind.

Profound15 profile image
Profound15 in reply to jwsonoma

Thanks jw. I have also stopped drinking, lost weight etc. So far afib seems controlled but do get annoying ectopics albeit mild ones fairly regularly. I only get one or two which is far better than before the medication. Do you get 75mg flec tablets

listerines profile image
listerines

Hello Profound15 - I have had ectopics for the past 7 months or so and ablation for afib about 5 months ago. After the ablation the ectopics got did get worse and then the afib events started occuring again after I was taken off flecainide at the 2 month mark post ablation.

Was then put back on 50mg flec 2x a day and seems to be controlling the afib events and has reduced the ectopics as well though has not taken them away altogether but made more manageable. Magnesium taurate and potassium balance has helped as well with the ectopics (though flecainide seems to have more of an impact). I have not increased my flec dose to see if this wouls take ectopics away entirely but am considering discussing with EP.

I certainly sympathize with your situation as the ectopics (pacs or pvcs) can interfere with quality of life and at times can be very disconcerting and anxiety producing. Keep working on the dose with your health professional team. Wishing you the best

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