I got home this evening to a letter from my EP. He outlined all the stuff we spoke about in the weekend , and has asked my GP to give me flecanaide . Letter states ‘until her her next review she has little or nothing to lose from the use of flecainide (50mg bd ) ( whatever ‘bd’ means?) which might hasten the return of normal conduction. Taken continuously on top of her other medication, side effects permitting’
It’s the ‘side effects permitting’ I’m a bit worried about. Also I’m sure he said in the meeting about risk of taking flecainide with underlying CVD. Except I haven’t been tested for that? So do you think it’s safe? Is this normal ? Many thanks for any help. 🙏
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patience12
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Ok thanks Bob. Do you know how they tell if you have CVD? I haven’t had scans or anything but he did ECG and said ‘pulse irregularity aside I found nothing untoward in my bedside examination of her heart (94bpm). 🤷♀️
Generally if you have angina or a heart attack! If an agiogram is done when CVD suspected it will show any narrowing of arteries. I've had three since about 1994 and all clear with only very minor narrowing. Stop looking for problems and relax!
Like you, I was prescribed Flecainide 50mg bd ( it does mean twice daily as Bob said) I was in some trepidation about taking it as I’d heard you should be monitored in hospital etc. initially but the private EP I saw said it was a low dose and based on the ecg I’d had, my age and lack of anything suggestive of cvd he was happy to prescribe it. He was right and it was fine but didn’t do anything to convert me back to NSR unfortunately but lots of folk have success with it, so worth a try.
I took Flecanide only to find months later it had an adverse effect on my feet. Now I’m dealing with neuropathy. I’d be aware of this drugs side affects.
Our tolerance to medication is very individual, hence the comments about side effects. Many people manage their AF with Flecanide. The only way to find out if it will help is to take it. Other people can offer their valuable experience but bear in mind we are all individuals, we all have different risk factors and different medical and family histories, so their story may not be your story. I appreciate it’s very unsettling when you’re new to this and it takes a bit of time for us to get our heads around new information and unfamiliar jargon.
In the US, the prerequisite for Flecainide is a structurally sound heart usually tested by echo and an exercise stress test. Then one week later, an ekg is taken to look for any issues. bd or bid means twice a day, so 50bd means you will be taking 50mg morning and 50 evening. It's a pretty standard starting dose.
You may have to wait a couple of months before the heart gets used to the new drug and noticeable issues dissappear nb nothing alarming, you may just feel not 100%. In the early days I remember feeling odd for 3 months, after that coinciding with starting a Magnesium compound and CoQ10 supplements (may be relevant) I was OK and have been for 10+ years now. My Flecainide started on the same low dose but needed to be doubled to a medium dose to stop the AF and I take no other drugs.
In terms of heart drugs, Flecainide is a relatively old tried and tested drug with a good success record, so try not to worry. Obviously if you do encounter any issues diecuss with your medics straightaway. I promised myself I would wean off it after 6 months and now in my 11th year still taking it with no known side effects 🤣.
When I was first diagnosed with persistent AF I took the same bi daily dose of flecainide as my cardiologist said it would give me a better chance of being able to get back to sinus rhythm. I had to have an echocardiogram first to endure the structure of my heart was ok. Took flecainide successfully for 2 years both before my cardioversion and afterwards. Have been mainly in sinus rhythm since august 2023 but had 2 AF occurrences this year when I’ve taken flecainide as a PIP (a one off dose) to help get out of AF. Flecainide has worked for me, good luck with your treatment.
I've been on low a dose (2 x 50mg) of Flecainide for 2 years now and it's been pretty effective but I had to double the dose after about 18 months as it stopped working as well. At the same time as my dose doubled my short sightedness increased almost immediately from -3.5 to -4.5.
After my ablation 7 weeks ago my Flecainide prescription was halfed and my myopia went back to 3.75.
I don't know if this is coincidence or not and I don't want to scare anyone off trying Flecainide. It has been effective for me and if it was the cause of my eyesight issues it was reversible almost immediately.
Also, my optician, with nearly 30 years experience, has never seen this effect before.
Oh my, let me describe my peculiar eye issues, although with me it is more of a benefit!
Several years ago, I had cataract surgery on my right eye. Of course, distance vision in that eye was corrected to perfect, but my undone left eye was still a bit off for distance. Along then sometime I was AF diagnosed an started on propafenone (an antiarrhythmic with similar actions to flecainide). A bit after that, while driving, I noticed that amazingly the left eye now had near perfect vision!! WHOA!! How about that!!!
But, then at a later time, noticed left eye NOT so perfect anymore. OH WELL, go figure. Then it was near perfect again!! And back and forth with no rhyme nor reason that I could figure out. It's so bizarre, I didn't even mention it to my opthamologist, as he would discount me as a nut case!
Now, reading your experience, I am wondering if I'm seeing some sort of effect from my antiarrhythmic, with the "back and forth" due to different blood levels of the propafenone (variable blood levels ARE an issue with this drug)-Just out of intellectual curiosity, I'm going to have to start tracking this phenomena!
Thank you Mr. Magoo for reporting your seeming bizarre observation!
I take 50 bd, but I can take an extra one in the evening if I feel not quite right. In an episode, I can take up to the maximum dose of 300 over a 24 hour period. This has helped reduce the length of my episodes, and the heart rate - my episodes used to last 24-36 hours, with HR up to 180-200. Taking the extra Flec takes me down to 12-15 hours, with HR 85-130. After, I go back to my daily dose of 50bd. I used to ask to be put on Flec, but was told by some medics you couldn't, because it had to be prescribed under hospital conditions, ie in an episode, admitted. I've went to A and E twice with Afib, first time I reverted with nothing, second time they gave me Sotalol, and sent me home to await reverting. So all I could do was wonder how you ever got the chance to try Flec.
From this forum I found out about the specialism of electrophysiology. I went to one, asked about Flec. Apparently the basis for the "hospital conditions" myth, was all about the $$$$ - when it started being prescribed in the UK, our medical profession copied the US Flec prescribing model, which was very profitable .....At my EP appointment, he wrote a letter there and then to get me prescribed. I don't know where I'd be without it.
I took 50 mg Flecainide, twice a day (BD is a shortened form of the Latin "bis in die" which means twice a day). Ober a period of two years the dose was increased to 150mg twice a day, which I was on for a further ,ten years I had no side effects and only one or two AF episodes a year, mainly just before I was planning to go to bed, for ten to twenty minutes only.After those 12 years I was found to be in persistent asymptomatic AF, which I consider to be permanent AF, and which I've now had for about seven years. I forget I have AF now. My only medication now is an anticoagulant, Warfarin being my choice.
I have been just under 6'7" tall since I was 18, sixty years ago, and am still that height. Over the years I've put on weight, the maximum was over 19 stones. Losing weight over the last 15 months has helped my breathing and exercise. I am now just over 16 stones. I eat mainly vegetables plus fish twice a week. I still drink low quantities of alcohol, ( by low, in the last year I've drank five bottles of wine in total.)
I too am on Flecanide 50mg bd (twice daily) but before commencing - my electro physicist insisted upon an Echo cardio gram to exclude any structural damage to the heart.
The consultation and echo were all done privately as the stress of waiting over 6 months for an NHS appointment was too challenging! Best money I’ve ever spent.
Prior to my current bd dose I was on 100mg pill in the pocket but due to the frequency of using it was changed to a twice daily dose with (so far) excellent results.
I also take Bisopralol 2.5mg od (orally daily) which having read lots of negative reports on hear was apprehensive to take but I really feel it has helped - I seem to take life more in my stride now and my blood pressure is now within much more normal limits (was already on Amlodipine).
Bd means twice daily. If your EP has prescribed it, they will have taken into account any contraindications, as Flecanide has to be carefully considered in respect of heart structure problems. I have no side effects after a long time on it.
I’ve been on flecainide since 2018 and I’ve found it brilliant in keeping my attacks away except when I’ve been silly like mulled wine and Prosecco at Christmas.
I had read about flecainide being a drug which can sometimes promote different arrhythmias, so when I was at GP one time I mentioned this and he said I was on a very low dose 50 twice a day and coincidentally he was on flecainide as well and very happy with it and he is probably only about mid 40’s
I thought well if a doctor takes it, it can’t be too bad and now I carry on regardless even though I have a number of heart issues and due for another ablation on September which makes me wonder whether I should go ahead with this Radiofrequency left atrium critical……as, touch wood, on flecainide I feel ok
Hi, I have been on Flecainide since May19 - 150mg a day (50 - am, 100 - pm). I have found it very tolerable, I have no discernible side effects. Excluding 1 small episode of AF in Jun 20 which auto-synced back to NSR, I’ve had no detected AF episodes since (Kardia mobile or self awareness) - now at 3 yrs + “AF Free”.
As per other comments, we all respond differently to meditation . Your Doctor will have taken your personal circumstances into account before prescribing it.
I was on Flecainide 50 mg, BID for over 2 years. Work good to keep me out of AFib but my feet were getting numb. Told both cardiologist and and the Electrophysiologist but neither seen to be interested. Few weeks ago, I decided to go off, so far so good.had some PVC’s ad PAC’s, had those while taking Flecainide too, so I just increased my beta blocker by a tiny piece, along with taking a Magnesium, seem to work. My feet are still numb but I read could take 3-6 months for it to go away, or maybe never. I am hoping soon.
I can't take Flecainide or have a cardioversion or ablation because an echo show an abnormality - enlarged back chamber of heart.
Surely you have had an ECHO or MRI? For your AF?
Certainly I would check back with H/Specialist before accepting a GP direction.
I have learnt that H/R High above 100 is important to control (on rest) than worry about rhythm. Control the H/R and the rhythm will change for the better.
I was prescribed Flec over the phone by my local Cardio Unit. I wasn’t happy with that ‘gung ho!’ attitude so I consulted a cardiologist privately. First thing he said was do NOT start the Flec until you’ve had an (urgent) CT heart scan - and he said, “and they should have done that before prescribing it as a matter of standard practice.” 😲
Thankfully the scan came back fine, but sadly I developed nasty side effects - severe constipation, vision disturbances and finally double vision. I’m not sure the hot soles of my feet was t something to do with Flec as well. At that point it was stopped immediately. It took weeks to get back to normal, and it didn’t stop the AFib anyway.
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