BJSHAF

[BJShaf]

Flecainide is a heavy duty drug for sure. My cardio says it works on the Central Nervous System. When you take a medicine it stays in your body for a certain period of time. The half life of this drug is 12-22 hrs. which means taking it 2 x per day you still have left over in your system because the effects of just half time is the above.

[doodle68]

Hi Bj I am confused by your post . I understand Flecanide is a very useful drug and can help to restore sinus rhythm . In order to be effective it needs to stay in your body for a certain length of time. A half life of 12-22 hours doesn't seem long to me, some drugs stay in the body for weeks.

[EngMac]

I find it interesting that flecainide works on the central nervous system. I assumed, and I never verified this, that it worked on the nerves in the heart. If it does work on the central nervous system, of which the parasympathetic and sympathetic nerves are a part, then this adds credence to my thought that perhaps the neck and spine also have an important impact on these nerves. I would be interested to know if others have more knowledge about how flecainide works.

On this website; drugs.com/cdi/flecainide.htm l found this:

Warning

"This medicine is only to be used to treat life-threatening abnormal heartbeats. It may cause very bad and sometimes deadly side effects like other types of abnormal heartbeats. Talk with the doctor.

Other types of abnormal heartbeats have happened with flecainide in some people. Sometimes, this has been deadly. Do not take flecainide if you have a certain type of abnormal heartbeat called chronic atrial fibrillation. Talk with your doctor."

It never ceases to amaze me the warnings for the drugs recommended for AF and still they are recommended, often without telling the patient the possible side effects. My family doctor tells me drugs only kill a few people, so the view is to not worry too much about this. Many people benefit. If you happen to be the person they kill; well that could be a problem for someone, but not you.

[Spoiler in reply to EngMac]

I take flecainide 100 mg twice a day since May, previously only 50 mg twice daily. I perspire really easy since the dosage has been increased. I did have a vtach issue on a stress test and they at one point dc it, but restarted it since it was the only drug left for me to take. It is a serious drug from what I have been told. Having my second ablation Sept. 25th, hopefully they can finish this time without complications as I experienced on the first one.

[CDreamer in reply to Spoiler]

And I do hope that helps.

[CDreamer in reply to EngMac]

Flecainide used to be - superseded by more modern treatments - for MS.

It certainly exacerbated the underlying condition I had, which remained undiagnosed and for which all rythm and rate drugs are contraindicated.

But I knew this, and took it anyway, simply because at that time it was better than not taking it because I was so symptomatic. I refused Amiodarone, Solotol and eventually Bisoprolol.

I do think we need perspective here - anything has the possibility of killing - water can kill you when you drink too much, my sister can’t take any dairy product at anytime - including when she was a baby and I was told many years ago that asprin was probably the most dangerous drug.

It’s always a risk/benefit and unfortunately there are not enough Functional Medicine practitioners who treat people rather than symptoms and there are too many people who are prepared to accept their doctors word and judgement becaus they just want a pill which will fix it.

We need to take response ability for our own health and wellbeing and we need the education and the knowhow to be able to make informed choices.

Thankfully there are plenty of people here who can inform, suggest and share experiences, including the importance of good posture and chiropractice.

[Alemo27 in reply to CDreamer]

Well said CDreamer!!! I agree - to make informed choices everybody's task. None of the doctors can and willing to observe the patients individual body functions. They need time and money!!

So, we can do it by ourselves.

I would take Flecaidine ( and it happens one in a blue moon) , if bisoprolol 2.5-5 mg (which I take as PRN) do not help.

Every medicine, after beeing approved by FDA, considering continue to BE TESTED, including the AF patients with other not related health problem. Of course, the adjustments should be made all the time, following changes of our body functions.

[BobD Volunteer in reply to EngMac]

When I was first involved with AF flecainide was NEVER used alone (always with a beta blocker) and NEVER prescribed by less than consultant level. It was also usually started in hospital to monitor the patient for possible other arrhythmias.

I guess familiarity breeds contempt.

[wilsond in reply to BobD]

I was given my first dose of Flec.in hospital,and taken off bisoprolol there at the same time.....why I dont know..a week later went into flutter as well..bisoprolol back in the mix ..two hospitals,different ideas? Very strange!

[Finvola in reply to wilsond]

Both my EP and cardiologist told me that the beta blocker was essential with Flecainide to help prevent 1:1 conduction of AFlutter. When I did my layman’s research of Flecainide-induced AFlutter, I found that its effect in lengthening the cardiac cycle may produce the right conditions for AFlutter to start in certain patients. (My layman’s understanding of a complex explanation)

Not sure why this known effect of Flecainide would be disregarded unless new evidence is available, perhaps?

[Finvola in reply to EngMac]

The warning reads very oddly to me, not clinical language but rather like anecdotal examples taking on clinical importance. For example, is permanent AF referred to as chronic AF in the warning, then if so, anti-arrhythmics would be of no use. Perhaps it’s just my reading of it . . .

[Buffafly in reply to EngMac]

That website should be banned! 😡😤😠 It must surely be the most scaremongering website in the whole world and I have lost count of the number of people here who have been put off taking a useful drug prescribed by a competent and responsible physician because they have read the endless lists of side effects and warnings they come up with, most of which I am sure are anecdotal! Something is only a side effect if you never had it before and it is ongoing and even then it may coincidentally be a new condition. All drugs are dangerous in the wrong circumstances or excessive quantities. If you overdose on paracetamol you will die a horrible lingering death but that doesn't stop people popping them every time they have a twinge of pain and shouldn't put off people who have chronic pain from taking them regularly. If you want to take responsibility for your health and safety regarding drugs and particularly if you are giving advice and info to others please use an official website such as the NHS one or BNF.

Rant over, apologies, it's not personal, not feeling well and this was the last straw 🙁

[Finvola in reply to Buffafly]

Ah, Buffafly - that perhaps explains the odd language used on that site - half knowledge applied to sound as if it is fact.

Sorry you aren’t feeling so well - and thank you for posting this. (Not a rant at all, by the way.

[Alemo27 in reply to Buffafly]

HelloBuff

I believe luck of knowledge can create such uninformed reply.

We used to say "Do your home work, before going to an exam"

Be well!!

[CDreamer]

Hi BJ - welcome.

I am left wondering what your purpose was in posting this statement? Have you a bad personal experience? Or just worried? It would help if we had some knowledge of your background.

I think there are some people who may find this a very frightening statement.

Flecainide is a very useful rythm drug which many here take without side effects. There are a lot of drugs which affect the central Nervous System - I have take one of them just to be able to get up in the morning but it a very narrow line as one tablet too much and it will cause exactly the same symptoms and anyone with any neurological condition will say the same. Anything that helps a symptom can also cause a symptom. Flecainide can cause arrythmias as well as prevent them and I had to take my first dose under medical supervision for that exact reason as you don’t know who will respond well and who not.

For me it’s about informing yourself and then making a personal decision of whether or not you would benefit - is it worse with or without?

Best wishes

[secondtry]

I have been taking 2x 100mgs daily Flecainide only for 4+ years now for Lone PAF. No known side effects that i can identify to date. Yes, it is a scary drug but I am building my physicality in the belief that the 'amazing body' can combat the worst side effects itself ....oh and I am an eternal optimist!

[Pacific]

I’ve never experienced and side effects with this drug.. It totally controls my AF. I take 50 mg twice daily.

[Drounding]

Flecainide has been a life changer for me. It controls my AF when I need it to and I have no side effects that I know of. I might need 50mg twice daily for a few days or just a single 100mg dose on occasions. I have learnt to recognise the early onset symptoms of my AF and Flecainide helps me live my life without the hassle of my AF. It's a matter of weighing up the risks of the drug vs the benefits to your quality of life.

[AnneWorner in reply to Drounding]

In other words, you are using this as a pill-in-the-pocket?

[jennydog]

100 flecainide used as a p-i-p stops my occasional AF. My EP says that I should take the tablet as soon as I am aware of AF and not to wait/hope that it will stop. I am not aware of any side effects.

Flecainide is a sodium channel blocker. ( we hear a lot about calcium channel blockers ). Does any one know how this affects or is affected by my sodium (salt) intake?

[Bagrat]

I take flecainide 50 mg twice a day with no problems worth mentioning. Years ago flecainide was used for difficult pain thought to be caused by direct nerve involvement. ( I appreciate that all pain is mediated by nerves!) Types of pain it helped,sciatica type pain anywhere, toothache type pain any where, stabbing pains. I believe it has been superceded by more modern drugs . Yes it does work on the nervous system.

I am confident it is the right treatment option for me.

[Finvola]

Hello and welcome. Flecainide has a short half life as you say and in my case has completely controlled my AF for four years.

I had a choice - to take Flecainide and a beta blocker and have a relatively normal life or suffer frequent debilitating episodes of AF.

Anti-arrhythmic drugs could be described as heavy duty because of the complex adjustments which they effect in the heartbeat. But uncontrolled AF is even more heavy duty - causing weakening and changes to the structure of the heart, heart failure, dizziness, fatigue and general malaise.

Everything in medicine is about risk versus advantage. If Flecainide works for an individual, it is truly a wonder drug.

[doodle68]

I think we have to look at the need to take drugs using a little logic , some are very potent and we would prefer not to have to take them but when the choice is between debilitating symptoms from a health condition or worse still dying most of us would opt for the drugs.

We are without doubt all going to die at some time and while we are here surely the most important thing is to have a reasonable quality of life which in some instances is only made possible by taking medication. I for one am grateful for having that option.

[Jhcoop55]

Flec is a very useful drug. For some, the drug has few or no side effects (like me 😀) and for others the side effects are more challenging. As with most drugs, everyone tolerates drugs differently.

I’ve spoken to a number of EPs and cardiologist and on balance, Flec is considered relatively safe and effective. In my case, it works like a charm, keeps me in SR, minimizes ectopics and allows me to live a full and complete life. Thank goodness it is effective for me, since my ablations were unsuccessful.

The comment about half life is irrelevant. You want a drug with a reasonable half life so it remains effective and active in the system until the next dose is taken. A half life of 12 hours plus does not mean endless accumulation or toxic effect in the body. This is normal and expected

I’ve also been told that it is important to take Flec in combination with a beta blocker or related drug, but depending upon individual circumstances, the beta blocker can be administered in a relatively smaller dose.

Finally, that “warning” sounds like a fake. While my background is as a finance executive, I worked in the bio pharmaceutical industry for 30 years and I have never seen such a poorly written warning such as noted in the post. Yes, Flec is a serious drug, but the “death” warnings are clearly over hyped

[dmac4646]

Here is a 25 year study on Flecanaide - I have been on it for 10 and have had stress tests and echo cardio all along the way and few if any side effects.

academic.oup.com/europace/a...

[BJShaf in reply to dmac4646]

Thanks! I actually had already read that study.

[Jacqlihe]

It just shows how different we all are and how our bodies react differently!

I used Flecanaide as a PIP for ages prescribed by my very competent and AF specialised cardiologist it sometimes worked sometimes not

after a very long run of AF and 150 some heartbeats, at a time my cardiologist was unavailable I was feeling worse than I ever had, I landed up in A and E

And something nasty happened after they started anaesthetising me for Cardioversion -they said my heart had stopped on its own ! Anyway, then back in NSR

It was generally blamed on Flecanaide

Since then various different remedies have been tried and we have all concluded after many tries, that none of them work and I strongly believe even have a sort of build up failure after a while although it is very difficult to get anyone to admit to this

I do log uncomfortable to very serious side effects on me but that s me ,

I am generally pretty drug intolerant ( this is cold , observed and sadly tested, fact about me and my experiences, hopefully a lot of you function very differently)

Sotalol had previously landed me in hospital having over months debilitated me very seriously

After a third ablation , a problem , a hellish two months with very serious hospital stomach bugs , i have embarked on a-“get fit”campaign including studying effects of food, vagus nerve, stress sleep, and weght control as I despair of finding any drug to control my AF

Magnesium, vitamin D and minerals are very much included

Hope this helps someone somewhere

[Ianc2 in reply to Jacqlihe]

Lifestyle versus drugs. Can you tell us more, particularly food and weight changes and effects. ?

[Jacqlihe]

So far, have managed to lose one and a half stone of the four I target, last time ( 1st ablation ) I lost four a;d had quite a long AF freeperiod managed to ditch mes ans felt much i am concentrating n keeping sugar low, avoiding booze until I get to tarhgh avoiding bugs of all sorts ( known trigger), avoiding adrenaline surges

Will report bavk

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