Flecainide dose

Hi,

I've been on constant flecainide for about the past month and I've had a few issues with getting the right dose for me. Started at 50mg twice daily then 100mg twice daily now on 200mg slow release capsules once a day. All because I keep getting breakthrough palpitations. I am contacting my gp today but I was wondering if anyone else has had this problem?

23 Replies

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  • It may take sometime to get the right dose sorted out and the drug doesn't always work for everybody. GP will probably not be able to do much as this drug should be monitored by cardiologist or EP. Max dose is 300mg in 24 hours I believe.

    Bob

  • Thanks for the reply Bob. I think my gp has instructions from my previous discharge from my EP. I just wondered if anyone else had this problem 😯

  • Bob I think the max dose is 400mg in 24 hours. I was on 150mgs x 2 as a daily dose and would take extra if I had AF but 100mgs, I understood would be the max.

  • I only know that when I had PIP it was 300mg and no more for 24 hrs. Long time ago mind.

  • Bob, I think you are right. I just looked up my leaflet and it says 300mg is the max daily dose for treatment of irregular beats of the upper heart chambers. 400mg is the daily max permitted for treatment of the lower heart chambers.

    Horrors. Does that mean if you are on 150mgs x 2 you have nothing to use as a pill in the pocket? I used to take an extra 100mg when I was on 100mg x 2 a day if I had AF and when my dose went up I'd take just 50mg extra and a further 50 if needed.

    I am sure that my cardiologist told me the max I could take was 400mgs in 24 hours. The leaflet does not discuss PIP.

    I do think that the less you take, the better and I raised the question of a tailor made dose only a few days ago.

    I am sure the tablets I've always taken are not slow release. What do yours look like Tototcx ?

  • Mine are pink and grey capsules. ..Tambocor XL is their trade name. I was trying this because I'd been getting breakthrough AF late afternoon and my gp thought it would give me a more constant blood level as it looked like it was dipping after 10 hours ish. But I've had to take an extra 100mg in the afternoon this past 2 days. 😢

    The tablets are supposed to have a half life of 12-20 hours but I might be a fast metaboliser! !

  • Well nothing like the flecainide I've had!

  • Hi. What is the problem you are talking about. ? Palpitations. ? You might need different medication. As bob says flecainide does not always do the trick.

    Phil

  • Thanks for your replying Phil. I'm getting a breakthrough run of arrhythmia which feels like it is going to rev up into AF so I've been taking a wee extra 100mg flecainide when it starts and it's happening most days in the late afternoon. This has stopped it from getting worse. I don't have an Alivecor so I just go on the feeling. My gp says this is ok. Usually when I get AF I get really bad tachycardia and I really want to avoid that if I can. I am seeing my EP on 29th September.

  • I would try some Magnesium supplement and probably CoQ10 asap with Alternative Practitioner advice, as the medics won't be interested. Many here as well as me think it does a lot of good and equally important very little downside assuming you have no other problems.

  • Thanks orchard worker. I've started magnesium but I will start coq10 as well today. I'll do anything that'll help. Thank you ☺

  • Lookup Dr Sanjay Gupta's (A cardiologist from York ) very interesting YouTube videos on magnesium, atrial fibulation etc etc he says magnesium is important and we don't have enough. Type in York cardiology the videos certainly takes the mystery out of our problems and explains them in simple language. It has put my mind at rest.

  • Thanks so much Lucy for mentioning Dr Gupta, very easy to understand his videos on Mg and the Vagus Nerve - learnt a lot .....every day is a school day!

  • I am more cautious and took advice from a Naturopath first, partly to make sure the dose I would take is more likely to be correct and also to recommend the right make, as I think there are differences, even though the same product is on the label.

    He put me on Nutri Ultra Muscleze (the Mg plus other good stuff for the heart e.g. Potassium, Taurine) 1 tsp x2 per day and then Lamberts CoQ10 200mg per day. After a blood test (the Red Cell one) my Mg was still down so he gave me Klaire Labs 150mg of Mg Citrate to take as well.

    I can't offer any recommendations all I can say it appears to have worked and over the last year or so of consultations I trust him as much as I do the medics.

    Good Luck!

  • A little more information might help.

    You don't mention just what the flecainide is treating. Do you have SVT (either supraventricular tachycardia or sustained ventricular tachycardia), paroxysmal AF, or something else?

    You mention "breakthrough palpitations" but without any additional info.

    How often do you get palpitations?

    How fast does your heart beat - normally and when palpitating?

    What kind of physical condition are you in?

    How your relationship with fear? Are you able to look at your experience somewhat objectively, or does it grab you and take hold? I mean, how much of a problem is it really?

    Have you had an ablation?

  • Wow. That's a fantastic reply. Thank you. Not sure you'll be ready for the answer! !

    I have been diagnosed in April 14 with paroxysmal AF. There have been several episodes that have given me really bad Supra VT,the last one about 3 weeks ago which really freaked me out. Resting heart rate is 65-70. In SVT it's going to over 200 and I don't tolerate beta blockers. Hopefully I'll get a calcium channel blocker next week.

    I'm getting lots of ectopics every day still on 200mg slow release flecainide but I've also been getting short runs of arrhythmia which I presume is AF trying to start? (I don't have an Alivecor as I'm reluctant to buy one ) so at that point I was told to take an extra 100mg flecainide which abates the Arrhythmia.

    I'm relatively fit but I am overweight and have been told to reduce which I am doing.

    I haven't had an ablation.

    The fear factor is starting to grip me. It's become quite a heavy burden and I've been prescribed diazepam to control the anxiety.

    It's a big problem. My life is changed. I'm 57 and I feel 77. I've stopped going out alone and I hide how frightened I am from my husband because of his concern.

    It's very hard to be objective. I can't work because I've had it 14 times in the past 3 months and because of the nature of my work I'm unreliable so basically unemployable and my doctor has said that I should change my career.

    Perhaps I'm being a total woos in others eyes but I'm unhappy. Very unhappy.

    Well,you asked! Lol.

  • Wow. It sounds like things have gotten pretty bad. No, you aren't a wuss, but you're in a really tough situation. I've found it difficult to remain calm and objective when - to borrow from my diary - I was wondering if the end of the rope was nearby. It's helped me to focus on the here and now, but my situation is simple - retired, living alone, in good shape otherwise.

    Your doctor's comment about changing your career is uninformed, inconsiderate, and/or stupid. I assume your doc is male because a woman would never say such a thing to another middle-aged woman.

    As for your unhappiness, my only advice, for what it's worth, is to learn how to deal with it. I'd suggest taking a Mindfulness-Based Stress Reduction course or something similar. It's good medicine for any emotional issues you may have.

    Best of luck.

  • Thanks so much for your reply and your time.

    It's funny you should say that about stress reduction because my son has given me a really strong talking to this evening about managing this stress. My husband is as stressed as me! Poor guy!

    I've never been like this. It's hard. However I'll do something.

    And yes my doctor is a guy! I'm actually thinking of retiring anyway so I might just do that 😁

    Thanks kodaska

  • You're most welcome. This may be more than you're looking for, but if you'd like some resources to help with quieting the anxious mind, you might consider the work of Kristin Neff. She's produced some very nice guided meditations on self-compassion.

    See the link under "Practices" at self-compassion.org/.

  • I used to take Flecainade, it nearly killed me, I was taking it pip. I took 150mg. And when the AF didn't stop after 12 hours I took another 100mg. I collapsed and had to be resuscitated. It was because my AF is not the fast heart beat sort it just goes out of rhythm and doesn't go above 100. I don't think I should have ever been prescribed it. The only pill I take now is Pradaxa an anti coagulant. My AF stops on its own or after I walk on the treadmill usually lasts about 12 hours. Be careful don't overdose!

  • Hi Lucy, I have Paroxysmal AF with similar AF experiences. I had some low dose PIP Flecainide in the early days but not as high as you took, then moved onto 50mg x2 per day, not strong enough, so ended up for 17 months to date on 100mg x2 per day. Maybe the body has got to get used to the higher doses slowly.

    I am aiming to get to where you are i.e. just an anticoag when needed and revert it back to NSR myself without regular drugs - well done! Just waiting until I am at the optimum Mg and CoQ10 levels and lifestyle is as good as possible.

    Many thanks for the Dr Gupta York suggestion, I will look it up.

  • I was told to take 50 mg of Flecainade twice a day about six months before my collapse. I was also taking Bisoprolol as well. I stopped taking the daily dose of Flecainade about three months before. I was taking more and more tablets with no improvement, in fact since starting Bisoprolol I got much worse. The collapse did me a favour I had an excuse to stop these pills they were wrong for me with a slow heart rate. The doctors seem to just medicate instead of listening. That's why finding Dr Gupta's videos made sense and gave so much relevant information. When you are well informed you relax more and it helps the condition. Please have a look at them you won't regret it and it will help you.

  • Thank you so much lucybod . I've been watching the Dr Gupta videos on YouTube and they are so good. They have helped enormously along with some help in getting my nerves under control! Knowledge is power as they say! But thank you for the point in the right direction ☺

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