Flecinaide

[Pommerania78]

Has anyone had the experience where Flecinaide takes up to four and five weeks before it really begins to have an effect? Thanks.

[Bailey2004]

hi, yes it took me nearly 4 weeks to convert to NSR after I started on Flecainide a few years ago. I’m still on it now and get breakthrough episodes but don’t last any longer than an hour max now unlike before

[Pommerania78 in reply to Bailey2004]

Thanks. How often do you get the episodes and how long have you been on it and at what dose?

[Bailey2004 in reply to Pommerania78]

Every month I usually have one episode but have frequent ectopics more often . I’m on 100mg twice a day and been on that for about 18 months. Was on 150mg twice a day before my ablation in Aor 2022

[Pommerania78 in reply to Bailey2004]

Did the ablation do anything for you?

[Bailey2004 in reply to Pommerania78]

Yes it reduced number and severity of AF episodes but left me with frequent ectopics. I then had ablation for those but it failed.

[Pommerania78 in reply to Bailey2004]

Did you try weight loss and "lifestyle modification" in addition to your medical care?

[Bailey2004 in reply to Pommerania78]

Yes I lost over 2 stone earlier this year and kept it off and cut out alcohol, caffeine, refined sugar and artificial sweeteners and additives. Ive recently quit work for a while as have a high pressured job as believe stress was my final trigger. This last month I’ve only had a few blips of ectopics and a 20 min AF episode but these were triggered by Christmas rushing about I’m sure.

[Pommerania78 in reply to Bailey2004]

Thanks. Are you familiar with the "Legacy Study" where the loss of 10 percent of one's body weight can put Afib into remission? Would that have applied to you? Presently I have lost just a little over 10 percent of my own body weight, and I am trying to learn about "real-life" benefits of weight loss.

[Bailey2004 in reply to Pommerania78]

Yes I was told to try lose 10% and I’ve now lost 16%. My AF has significantly reduced and now feel just have to deal with the episodes I’m left with.

[Pommerania78 in reply to Bailey2004]

So you believe that the weight loss has help you "significantly"? Thanks again.

[Bailey2004 in reply to Pommerania78]

Yes I believe it has for my AF

[Pommerania78 in reply to Bailey2004]

Thank you for your replies. I'm interested in any further information you might have about weight loss helping your situation, as that is one of the main things I am doing and I want to learn as much about it as possible from someone who has succeeded. Thanks again.

[mcpacs in reply to Bailey2004]

I had an ablation for paroxysmal Afib in 2011. It was successful in stopping the Afib. However, in 2020 I started having continuous ectopic beats, mainly PAC's. My cardiologist told me not to worry about those, because they were benign. However, they made me feel very uncomfortable. So, a year later my cardiologist started me on Flecainide 100 mg twice a day. It has been successful in stopping the ectopics since then.

[Pommerania78 in reply to mcpacs]

Thanks. Did you ever lose weight or have "life style modifications"?

[mcpacs in reply to Pommerania78]

Yes, I have made lifestyle modifications which includes losing weight and reducing sugar and high carbohydrate foods from my diet. Reducing stress is also very important for me as I believe this is a major trigger for me with ectopics, and prior to my ablation, causing Afib.

[Bailey2004 in reply to mcpacs]

That’s what I’m on but still not stopped them. Have reduced stress from work recently and they’ve reduced a bit since then.

[mcpacs in reply to Bailey2004]

My cardiologist/electrophysiologist told me premature atrial contractions (PAC's) do not lead to cardiomyopathy. Premature ventricular contractions (PVC's) if over 30% of your heartbeats can lead to cardiomyopathy.

You may want to have a Holter monitor performed to determine exactly what type of ectopics you are having, premature atrial contractions (PAC's) or premature ventricular contractions (PVC's).

[Bailey2004 in reply to mcpacs]

I’m having both but mainly multifocal PVCs, they tried ablation but he said he could be forever chasing the problem after it failed so I opted not to go through it again.

[mcpacs in reply to Bailey2004]

Do you know the percentage of heartbeats that involve PVC's?

[Cabinessence in reply to Bailey2004]

That's interesting. Where do they burn for the ectopics then?

[mjames1 in reply to Bailey2004]

Do you take an extra PIP dose when you go into afib and if so, how much?

[Bailey2004 in reply to mjames1]

No I don’t, just my standard 100mg twice daily

[AAJJTt]

Hi, I started taking Flecainide in May 2019, prior to that there had been some sporadic episodes for a few months; all of which had auto reverted to NSR within 4/5 hours. The medication was quite effective immediately. Since then I had one breakthrough about a year later. Again, it reverted to NSR spontaneously while I was in A&E.

After this episode, the cardiologist give me the option of a PiP. In event of more PAF, I need to take another dose of Flecainide with a beta blocker. The idea being this extra medication will help nudge be quickly back to NSR before I need to present. I am pleased to say, so far, I’ve never needed the PiP and have been in NSR since 2020.

[Poochmom]

I couldn’t take Flecainide daily because it gave me other arrhythmias but it worked like a charm as a PIP. Converted me every time within 2 hours.

[secondtry]

On 200mgs per day, it took 3 months to feel OK and this coincided, relevant or not, with me starting Mg compound & CoQ10 supplements.

[Pommerania78 in reply to secondtry]

How long now have you been on Flecinaide? How much Mg and CoQ10 do you take?

[secondtry in reply to Pommerania78]

10 yrs.

For Mg I use a lotion and a powder compounded with other 'heart goodies' known as Nutri Mega Mag Muscleze. Dose level not known. I know its not enough as I don't seem to be able to lift my 'Red Cell Mg ' levels.

For CoQ10 I take 200mgs week days & 100mgs weekend, which keeps my tested level at the top of the normal range.

Haven't tested levels for both these supplements for 4 yrs but just done one and still waiting for the results.

[Mcopt]

I started 100mg twice a day just over a year ago it stopped my 5 week episode in about 2 days I am still taking it and so far thankfully remain in NSR . I have discussed tapering down to 50mg twice a day for a couple of weeks then if ok going to pip but would go back on it if AF becomes regular. I will start reducing after xmas and after modifying a few lifestyle factors. I also take 1.25mg bisoprolol once a day. Seasons greetings to all out there.

[Pommerania78 in reply to Mcopt]

What were your lifestyle modifications? Thanks.

[Mcopt in reply to Pommerania78]

Hi the usual lose a bit of weight no sugar more exercise and importantly reduce stress just hopefully coming out of a rather stressful time I am finding mindfulness and meditation helps also improving sleep patterns with me I am fairly certain my trigger for a fib is stress but obviously weight and lack of exercise you more vulnerable cant turn age back so 68 doesn't help.

[Pommerania78 in reply to Mcopt]

What would you describe as "mindfulness and meditation"? Perhaps I could apply it to my life. Thanks.

[Budken]

I was given Flecainide 50mg in the Hospital. Within 20 minutes I was back in NSR. I have been taking it now for twelve years. A year ago, it was suggested by my Cardiologist here, that since I had no episodes in the past four years, that I stop taking it, and use only as PIP. About two months after stopping, I had an episode that lasted twelve hours. The PIP did not work until I had taken the entire dose. ( I was taking it gradually to see if I would go back into NSR ) I am once again taking it, but only 50mg twice daily. I have once again not had one episode.

[Pommerania78 in reply to Budken]

Thanks. Did you also lose weigh and "life-style modifications"?

[Budken in reply to Pommerania78]

I was never overweight. I get exercise walking every day, have done so for years. So no, I made no lifestyle modifications other than I no longer drink alcohol because of the Flec.

[custard1]

hello I take 50mg twice a day, usually keeps all under control. on the odd occasion I've had a breakthrough I take another 50mg which always works back to normal rhythm usually within 1-2 hours.

[Pommerania78 in reply to custard1]

Thanks. How long have you taken Flecinaide?

[Obis891]

Most certainly but in my case unwanted manner. It did not control arrhythmias and led to nausea. Lightheadedness and visual disturbances , eventually sight loss in one eye. As a Pharmacist I stopped and challenged again twice..same result so I stopped it. Electro cardiologist was alarmed and did CT brain scan....fine. I have since taken over my treatment and am in Sinus rhythm.

[Pommerania78 in reply to Obis891]

How did you get back in Sinus rhythm? Thanks.

[Obis891 in reply to Pommerania78]

This is something I cannot recommend as I am a Pharmacist and hence drugs are my thing. I cut out all the medication gradually until I only take apixaban ( which I must take ) and with moderate daily multi trainer exercise I attained SR in about 2weeks. Caution if you do not have knowledge

[Pommerania78 in reply to Obis891]

What is about your exercises that made you go into SR? Thanks.

[Obis891 in reply to Pommerania78]

I have mild COPD so my guess? Clearing the lung relieves pressure on the left ventricle which helps. It has to be said in March out of the blue after a covid vaccination I ended up with open heart surgery to replace Aortic valve and major repair to Mitral which left me in AF and flutter. The ablation in August failed but the transeptal puncture caused major issue. There is always the possibilty that the scare tissue on the vena cava took longer to form than I might have expected.

[fcmdl in reply to Obis891]

I too have not had a good experience on Flecainide and experienced nausea, lightheadedness, extreme fatigue and water retention. Also taking apixaban (was on it for some time before adding Flecainide) and dilantin. Dilantin was changed to Lacodomide as it reduces the effect of the apixaban, but have been taking this for a while also. The Flecainide was reduced by 1/2 tablet in am/pm, but still feel terrible. Sugar/carbs/alcohol have not been part of my diet for several years and my BMI is normal. Due to other issues (asthma) I cannot take beta blockers. Cardioversion is booked for mid January. Has anyone else experienced these side effects?

[RajaRua]

I started on 200mgs a day 100mgs twice a day. I’d been having long bouts a week before that. Flecanide stopped the episodes immediately. But I did used to get breakthrough episodes over the years but now very seldom as I had to go up to 150mgs twice daily during Covid as I became very anxious at this time. I lost weight 4 stone also which I think helped and I steer clear of my triggers chocolate alcohol and coffee. It all helps I reckon.

I sometimes wish I’d begun on a smaller dose like 50mgs twice daily as I have a feeling it may have worked. I’m vet sensitive to medication and usually half the usual ammount works well for me. We are all so different in how we react to meditation.

Try to steer clear of the triggers. I do get away with a little of what I fancy now and then but if I over do it I’m in trouble.

All in all Flecanide has been, and is very good to me. I hope its as good for you Pommarania

[Pommerania78 in reply to RajaRua]

How many years have you been on Flecanide? How long did it take you to lose the weight?

[RajaRua in reply to Pommerania78]

I’m on Flecanide going on 14yrs now. I’m well pleased that my attacks have almost stopped. I think that having Flecanide on an empty stomach must have something to do with needing to have whatever makes up the drug undiluted. I’ll ask dr Google!!

I lost 4stone in 4 years. Started with a year at Slimming World which I found very good. It got me to discipline myself around food. It’s a great set up and if you have a good dynamic leader you’re on your way. Our leader was funny motivating encouraging and a great teacher. A very lucrative way to make a living if you have the above qualities too!! After a year I felt I’d gotten the drift so to speak and I’d lost two and a half stone. I lost the rest in the next three years. I was very determined as I’m aware of how being overweight affects everything. My BP Is much better too. And I do love feeling lighter. I was 15st 3 lbs and I’m now 11st 7lbs. I’m tall so I only went down one size 18 to 16. But that doesn’t bother me.

Have discovered some beautiful German chocolates recently called Booja Booja. They’re organic truffles. OMG. Very delicious but dangerous!! :-))

You get them in health food shops. Happy Christmas Pomerania !!

[Pommerania78 in reply to RajaRua]

Thanks. Here in the United States the instructions on Flecainide say: "with or without food". But I may from now on try not to have food within an hour either way of taking it. As of this morning I have lost 29 pounds in about ten weeks. I think that is about 2 stone.

[tunybgur]

My AF stopped immediately after starting Flec and hasn't returned for nearly 4 years.

100mg in the morning and 50mg in the evening, always taken an hour before or after meals

[Pommerania78 in reply to tunybgur]

Why is it important not to eat WITH Flecainide? Thanks.

[tunybgur in reply to Pommerania78]

I don't know, just following the instructions on the box, it normally means the absorption into the bloodstream is better, although I think a lot of people ignore it.

[JoniM]

I was dx with Paroxysmal AF in 2019. Initially every Few days would only last about an hour or so and always self correct. Gradually got worse, to almost daily and several hours episode. Nov 2022 began Flecainide 50 mg morning and before bed. Also metoprolol 25 mg extended release morning, evening. Episodes became less frequent but much longer episodes at lower rate, which was a bit scary. Cardiologist suggested to give it time. Then March 5 had my last AFIB episode to date. It just stopped going into afib at all. Almost felt like a switch was flipped. I wonder…I took an extra flecainide 50 mg as a PIP….did that cause the permanent sinus rhythm or were the meds just in adjustment? A couple of months later on my primary care doc’s astute advice my metoprolol was reduced to 25 mg only at night. I’ve continued in sinus rhythm without any noticeable episodes (confirmed periodically with apple watch). The reason for the Metoprolol reduction is that I was feeling VERY fatigued which is common complaint with beta blockers. My normal resting heart rate is about 58-59 but it was going down to mid 40s. That’s ok if your an elite athlete but I assure you I am not. So now it’s at more like 48-53 and that is manageable. Also taking B12 as my MD tested and found it to be on the low side. FYI, I am 72 yr old female with strong family hx of afib but no other risk factors….no hypertension, diabetes, weight normal, exercise daily, no smoking, very occasional alcohol, eat pretty well. All heart tests I’ve done show normal healthy heart which is why I’m a good candidate for flecainide.. Hope this info is helpful. We’re all different, good luck!