I was prescribed Flecainide pill in pocket by Cardiologist last year. He had to check my cardiovascular score first as heart disease can be affected by its use. My calcium score had unfortunately moved from minor to moderate in 5 years. However Arrythmia nurse .. quite bossy! told me later on.. that I shouldn’t use it. To those on Flec… were you given go ahead after cardio check? I will see Cardiologist again in February. In meantime your thoughts would be helpful .. thanks!
Flecainide and heart disease - Atrial Fibrillati...
Flecainide and heart disease
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Lizty
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Hi,
My Cardiologist required me to have a Cardiac Scan first before he would consider giving the go ahead to use Flec. Although use of Flec has now been approved I have managed on my existing medication and have not needed to use Flec…… yet ! At least it is all approved.
Your consultant is the person you should listen to in my opinion. It is best practice to check Cardiovascular health before starting flecanide, even as a PIP.
There used to be an absolute rule of no Flecainide if you had "heart disease" by which was mainly meant atherosclerotic disease, and especially after having had a heart attack. This came about because of fhe CAST trial some while back.
Although I did have atherosclerosis found and a stent and CABG done at the time I had an aortic dissection 7 years ago, my EP put me back on to Flecainide after my recent ablation, with the comment that "we are much more relaxed about Flecainide now". I think this probably refers to subsequent trials that showed if you stratified patients according to risk then Flecainide was still contra-indicated in high risk cases, but in low and medium risk cases actually produced better long term outcomes than no Flecainide.
The risk assessment involves an echo and ECG (not sure what they're looking for but my EP described my heart's pumping action as "very good"), and in my case both tests were clearly OK, and I am on Flecainide which is doing a nice job of controlling my ectopics.
As others have said, this is something to discuss with your Cardiologist.
Thanks. That is useful to know. My heart has always been pretty strong but clearly the atrial fibrillation has been a setback. As for the atherosclerosis … this was quite a new diagnosis and upsetting enough before the intervention of the nurse! She had a good general knowledge but in the case of this community and our own commitment to our own health it is good sometimes to dig a little deeper! My calcium score went from 60 (mild) to 130 ( moderate) in only 5 years. Scarey. I blame lockdown and Covid as I have few other risk factors!!!
Have you been taking vitamin D? If so how much?
My question to my cardiologist when I see him in March. " given that I have a bicuspid aortic valve with mild stenosis, and recently diagnosed with osteoporosis, -3.1 out of a possible-4, is it wise to take the Valcium/ Vit D prescribed by Osteoporosis team? Do I want to add calcium deposits? Holding back until then
The answer to that is what is your Vitamin K2 intake? See a book called Vitamin K2 and the Calcium Paradox, by Kate Rheaume-Bleue, currently cheap on Amazon Kindle, and with full references. The trick is to make sure the calcium goes to the bones, not the arteries, and this is what K2 does. You'll note some Vit D preparations are combined D+K2, that's why.
This is interesting. I suffered a compression fracture of the T8 about 8 years ago - after a dexa scan the Orthopaedic surgeon put me on a weekly tablet of150mg Ibandronic Acid and a once weekly 50,000 (not sure what the minute measurment is ! )of ergocalciferol when the scan showed osteoporosis and osteopenia. I am on holiday from the the Acid after taking it for 5 years as it can cause osteonecrosis of the jaw - My GP still prescribes the calciferol even though my Vit D levels have risen well - should I ask her to discontinue or reduce the frequency of the tablet (it is a prescription only vitamin form)? I have never before or after the compression fracture suffered any bone fracture. What tests show show calcium in the arteries?
Ergocalciferol is Vitamin D2 and 50,000 IU weekly is a boosting dose, roughly 7,000 IU per day. A typical maintenance dose of D is 4,000 to 6,000 IU of D3 daily. D gets used up if you are fighting off an infection and though there are stores in the body it may be best to be able to recover it quickly. It can be bought OTC but if you can get it prescribed, why not! Do you know what your Vit D level is now?
But Vit K2 is still crucial, since without that the calcium won't go to the bones where it should (and may go to the coronary arteries). 100 micrograms a day is often quoted, and of course you can get it from food, [edit: not leafy greens, that's K1!] search the internet
Thank you, I know when I started my Vit D was something like 12 and I recall it had risen to somewhere in the 20s(I think)on my last complete blood test.I'm in South Africa and my Medical Aid Society pays for an annual complete blood count, which will be due in February . Here the Caciferal tablets are scheduled items and need a doctor's prescription.I will talk to her about it -my next six monthly appointment is due in February when she reviews my prescription. I'm probably deficient in K2 as i'm not fond of dark leafy vegeables, I prefer to eat lettuce every day - salad vegs are more enjoyable in our climate !
I slipped up on the leafy greens - see corrected post above.
Only as winter top up? My Vit D levels are normal without top up.Not sure of relevance?
Everyone is different - amount of sun exposure, latitude on the planet, winter vs summer, amount of pollution or haze cutting out UV wavelengths, skin colour (darker skins make less Vit D from sun exposure), diet including vit D (e.g. oily fish) and how much, use of tanning sunbeds. All this is why it is necessary to test individual levels; guessing or going by someone else's experience may not work for your situation. Doctors would not dream of prescribing thyroxine without testing thyroid hormone levels, should be the same for Vit D.
It was 2016 when I had my 3rd ablation. When I last saw my EP (probably in 2017 he almost begged me to try and stop taking Flecainide. I could see that he didn't like that drug.
Jean
Interesting thread. I'm still really at the start of my Afib journey. I had heart attack in late Jan this year. Stent fitted. 'Heart function' has thankfully returned to normal. But I started getting episodes of AF shortly after my HA. While others might not rate mine as particularly debilitating compared to theirs, I am normally very active. And I can't take the risk of going and doing 'my thing' if I'm in AF.
Initially I had hoped that I would be put on Flecainide as I understood it had a good success rate and relatively few significant side affects. However I've been told (cardiologist and also EP) that if you have previously had an HA you cannot be put on it. I also have a low overnight heart rate, which means options for increasing e.g. Bisoprolol are very limited.
From what the EP is saying, it looks like I am heading inexorably to ablation as the only real option.
And a good option it should be.
I had already had an echocardiogram to check that there was nothing structurally wrong with my heart and I wasn’t overweight etc. The EP who prescribed it for me didn’t believe I had paroxysmal AF until he had introduced me to having a smart phone and Kardia and I had sent him a reading of my heart in AF! He sent a prescription for Flecainide to my surgery for me. I took it as a PiP at first but now that I take it regularly it has virtually put an end to episodes (and I’ve been able to reduce the first pill of the day to 50mg retaining the evening one at 100mg.
Hi
As a precaution to a no for Flec you should have had a ECHO, 24hr Heart monitor and ECG.
Any abnormality in the structure in your heart it should be a NO for an antiarrthymic med like Flec for rhythm ( a risky serious med which could make symptoms worse.), cardioversion, or ablation.
I got a NO.
But CCB Calcium Channel Blocker controlled my heart rate in a dramatic way. 180mg CD Diltiazem in 2 hours reduced Bisoprolol's attempt from 156 to 51 in 2 hours.
With trials it was settled that
AM Diltiazem 120mg CD for h.Rate control
PM Bisoprolol 2.5mg for BP control.
Except Diltiazem does a bit of BP as well.
Today I've dropped Bisoprolol, and watching carefully the stabilization in both BP and Heart Rate. Under 100 great for Heart Rate, 135/below 80 is great for BP.
Take care and do your research.
I have no abnormality in Ventricles or Valves.
cheri JOY. 75. (NZ)
hi
After the cardio echo I was advised to have 50mg x 2 daily which has increased to 100mg x2 daily. Has I had a spout of episodes in oct Nov I am waiting for dr to fit me with 7 day monitor before being referred back to cardiology. Think she’s forgotten so got to chase that
I have had a heart attack, so there is some (minor) damage to my heart muscle, and I have a leaking heart valve. Both conditions were -and still are- no objection to take Flecainide on a permanent basis or as PIP. The only thing you (or your cardiologist) have to keep an eye on is your QTc value: it should ideally stay below 450. If you take too much Flecainide, that number tends to rise. But taken as PIP the chance that that happens is remote!
All the best!
Hi Lizty same thing happened to me also my QT had also become extended. 6 weeks after coming off Flecainide AF began again and occurred weekly.
I am 67 and first went on Flecainide some 20 years ago and it really worked for me. Interestingly those days you had to have a an angiogram before they would put you on Flecainide for the reason as I understand, it carries high risk should you have a heart attack.
I always maintained I have Vagal AF and a some 3 years ago I was put on Dysopyromide and have been in Sinus rhythm ever since. Hope this helps
I do not think Flec carries a “high risk of heart attack” for those put on it… if your heart is structurally sound. If it did, it would not be prescribed. It has been used for decades by many many people.
hi sdweller probably the way I’ve explained it, my understanding is that should you have a heart attack or event whilst you’re on Flecainide it carries a higher risk of complications or survival hence the reason that we had to have an angiogram before we could be prescribed. Having said that this was 20 years ago and maybe the thinking is different today although I was taken off Flecainide around 4years ago following an MRI that indicated mild sclerosis of my arteries
That makes sense… for those who have had a heart attack previously, Flec can add the the risk of having another… at least that is the way I’ve understood it.
Yes.. I had an angiogram…. Radiologist said he would stop it if calcium levels were too high. Seems they were ok according to him?
Prior to being given flecainide I had a treadmill test to check if this would be safe. It clearly showed ischaemic heart disease and I had a stent. I have now been told that I cannot take flecainide.
My treadmill etc were good. Heart ok … just arteries a bit full!
The arrhythmia nurses provide a good service in ongoing advice amd support once you've been seen by a cardiologist. They shouldn't be destabilising you by contradicting advice, even if they disagree. As everyone says - you need an echocardiogram test if not already done - to check your valvular function. So this would be something to check in February. As for the calcium deposits, I don't know much about this, other than what Cliffe has said re VitaminD supplementation. Studies have shown that without the aid of K2 you can end up with calcium deposits in the vascular system due to non absorption. BTW- curious to know procedure for assessing calcium levels.
Flecainide has a black box warning. In the past here in the U.S., they would hospitalize people when initially prescribing this drug because of the ill side effects and to see how one would react on it. But even then,unfortunately the side effects come on later. For some it may be beneficial for others it is very bad news. Do your own at home study on this. Then you should become more savvy, then on what you may hear from others. Blessings...
Flecaunide has a LONG history of usage… decades now. True, not everyone can take it, but that goes for many if not most drugs. It is NOT a “dangerous” unknown entity, again because so many have been taking it for so long. Follow your Cardiologist recommendations and if you fall into the category of being able to take it, then you are indeed statistically very safe when taking it.
When I was placed back on Flecainide my doc had me go through a stress test. I asked and she said the 10 year death rate on flecainide was high. I was not given any causal link.
I was prescribed Flecainide by the EP that done my ablation. As I was not totally happy with it as I have two stents I had another opinion by a renowend arrythmia cardiologist who said no way to take it just take 1.25mg of bisoprolol twice daily instead. This I have done since with no ill effects.
It’s pretty simple, it’s up to your Cardiologist. My heart is healthy and strong, despite my PAF, and Flec has been fine for me, but everyone is different. Nurses know a lot, but this is up to your Cardiologist, and better yet, an Electrophysiologist? Flec has been used for decades now, so it has a long track record of use… and lots of real life usage, so that is good. It’s been a life-changer for me! Good luck!
Has Flecainide stopped completely Afib? Thanks.
Yes… I have not been in Afib at all for 5 years now. This is the longest I’ve been in NSR for 30 years, for me Flec has restored my life!
Do you ascribe the NSR completely to Flecainide? Did you change your diet, etc? Thanks.
Well it’s a long story lol… there are a lot of things I do, diet, a couple supplements. I had my second ablation 5 years ago, had an episode of Afib 3 weeks afterwards… so went back on Flecainide and have been perfect since. So yes, pretty sure I owe this to the Flec, but the ablation helped for sure also. So now this has been the longest stretch I’ve had with no Afib for about 30 years. I’m on the lowest dosage I can be on now, and all good. Doc says I could try PIP but if it ain’t broke right? Having delt with Afib for so much of my life, all I can say is since I started the Flec it’s never been this good for me. I’ve been told by others that for some the effects can wear off over time, but then there are some who have been on it for a decade or more and no issues. Everyone is a little different.
What are your diet and supplement changes? Thanks.
I never eat a big meal late into the evening, and sweets I keep intake very low. Any type of food high on the hypoglycemic index is mostly avoided. My EP at the Cleveland Clinic told me I tend towards low potassium, which causes me many ectopics, and which can lead to a bout of afib. He told me to consume up to an extra 2 grams of potassium daily, he likes low-sodium V8 which is very high in potassium. When I started this, it made the ectopics almost go away and to this day it works for me. He also believes that magnesium supplements are good for me, Magnesium Lysinate Glycinate. (I use Doctor's Best brand for this). It is high absorption magnesium. You can take as much of this as you c an tolerate, I try to take at least 200mg... but many take much more. Too much Magnesium just leaves your body. Potassium you have to be careful, as taking too much can be harmful. This is not advice for you, but this is what he reccommended for his afib patients. The potassium for me is essential to this day for ectopics!
I was given the go ahead to use it after several tests ordered by my cardiologist in Canada after being told to use it by a cardiologist in Spain. My cardiologist in Canada prescribed it as a PiP and told me to take my first dose in a hospital setting. I have actually only used it once (in a hospital setting) where a cardio version was also attempted (which was unsuccessful). Converted about 6 hours after I took the dose. Two weeks later I had an ablation (which had been long scheduled) and I have been in sinus rhythm since the procedure so no need to take the Flec. I will keep it in reserve and follow the protocol of ensuring a dose of beta blocker 30 minutes before taking the Flec should I have any breakthrough episodes.
Guess a pip is the way forward !
hi, I use fleck as pill in pocket and have an annual echo
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