I have both a cardiologist and electrophysiologist since my first episode almost five months ago. I have lost twelve pounds and almost to my BMI weight recommended by the cardiologist. I had the Nuclear Stress test in my Cardiologist office because they had the convenience of taking he Lexiscan sitting in a chair vs the tunnel apparatus.
All my tests came back as normal. I saw the electrophysiologist (saw him in the hospital a few days ago as follow-up to my first episode in the ER and asked him if I could cut back on my medication since I had not episodes. He said that it was up to me but that he would keep me on the Eliquis because of risk of stroke. He didnt seem concerned about cutting back on the Flecainide to one time a day for a week and see how I felt. He said, if feeling fine I could go down to one tablet every other day and then no pills except for a pill in pocket should I go into AFIB. I feel fine with 2 times a day flecainide but feel that if I don't need it, why should I continue to take it. Has anyone reduced their meds and how did you feel and how often did more episodes if any occur? I will definitely stay on the Elequis as I know the about the stroke risk.
I see the regular cardiologist at the end of the month and see how she feels about the reduction in the Flecainide. Tests were all normal and no valve or other issues seen on echo and stress test.
Also, what causes the AFIB to progress? Is it being on medication and it stops working, age etc.?
Would really love to hear everyone's thoughts.
In appeciation,
Cynthia
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Strawberryfields1
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My experiences and thoughts are simply that the less you can use medication the better as taken long term all of these anti arrhythmic meds have consequences. My feeling is only take toxic medications when absolutely necessary. Have you discussed the option of going with the reduction of Flec and then perhaps have a plan for ‘in case’ maybe use as a PIP?
Your second question about progression is much harder because there are multiple reasons and there are many variables. Progression is not really the issue as many long term sufferers such as JeanJeanie will tell you that living in permanent AF is much easier than living with Paroxysmal - as long as everything else works. And that is the rub as AF is often a consequence of underlying dysfunctions - genetics, sleep apnea, Hypertension, being inactive, poor nutrition, ageing, Autonomic dysfunction, poor lifestyle, existing co-morbidities such as diseases of the organs, cancer treatments, over exercising, your state of mind and most important - the underlying physiology of the structure of your heart and cardiovascular system, If all of the factors which can be modulated are, then although you cannot undo any damage, unless you have uncontrolled AF with high heart rates you may not suffer long term damage.
Some people take anti-arrhythmias long term and are able to metabolise them without consequence, I wasn’t one of them. I suffered damage from the anti-arrhythmias, which is why frequent monitoring, is essential. I had the signs of long QT Syndrone, probably caused from the 2-3 years use of Flecainide which stopped being affective for me after about 18 months of daily use - I was on the highest dose.
All of these factors contribute to outcomes and every single AF’er will have a unique experience because we are all unique. AF is not a caused by pathogens directly but could be a consequence of our body’s reaction to the infection - eg: many posters report AF often worse during infections. I hope you are seeing the larger picture I am attempting to paint?
Nothing is inevitable but unfortunately neither is it predictable, doctors work with probabilities and possibilities based on their expert knowledge and experience so that is what they offer you - their expert knowledge and past experience of this condition but you are the expert on you. How do you feel about taking a medication as a prophylactic?
In your shoes I would attempt to reduce and stop Flecainide if you are not experiencing episodes but be prepared to amend your plan. Experimenting is the only way you will have your questions answered.
Absolutely in agreement re toxicity of medication. My Arrythmia Nurse was clear on this - only take if needed - danger of side effects etc. I've found I'm very responsive to pharmacological products.
A solid response above from Cdreamer.My centre of gravity is such that I try to avoid medications if I can. Obviously it is not always possible. I do take an anticoagulant and I used to take 2.5 mg of bisoprolol. I recently reduced this dosage to 1.25 mg and I feel fine. With this in mind I would be reluctant to take flecanaide on a daily basis and would be more inclined to use it as PRN/PIP.
To my mind the progression of the pathology caused by AF is linked to a process of fibrosis within the heart. The longer you stay in AF particularly with tachicardia the more fibrosis is likely to occur, this will encourage even more episodes. The presence of other comorbidities will exacerbate this process. It is therefore important to minimise your AF burden and of course judicious use of medications can help to achieve this. Also lifestyle choices are important.
AF is a progressive condition and nothing to do with medication. Think of the way a river changes its course over the years (oxbow lakes etc) and that is what happens to the electrical pathways in your heart. Without medication it will may be much faster BUT a few lucky people may have the odd events spcaed ove many years before it progresses.
I discussed this very question with my EP about 8 years ago when I had been taking Flecainide 2 x 100mg for a year. He encouraged me to me try to reduce very slowly and if things didn't work out, I could resume my normal dose.
Unfortunately, things didn't work out and I resumed the 200mg daily dose but I'm glad I tried to reduce and am happy that my AF is controlled.
AF is normally a progressive complaint - all the more reason to use the lowest dose possible - but I feel that lifestyle adjustments are important in helping to keep in rhythm. Having a healthy BMI (well done you), destressing, moving to a mostly plant-based diet and controlling or cutting out alcohol intake are the usual points that help.
Hi, I was on Flecainide 50mg X2. After my first ablation- which we knew wasn't success - I did feel well enough to cut down my evening pill to 25mg. And was stable. If I had an outbreak, I could take extra as PiP. I preferred to do it that way. When eventually post ablation #2 I came off altogether but slowly. I'd recommend getting a pill cutter and taking a half pill in the evenings before say - taking morning only. It is up to you - I preferred to stay on a lower dose and use extra as needed - some people prefer and do better on a higher dose to keep AF at bay. You can only try it - your body will let you know!
Reducing a Flecainide dose is very subjective and very much a personal decision.
I have been on a regular daily dose of 200mgs (a medium dose) for over 10 years now and in that time only two very brief AF episodes under one hour.
So you might ask, given it is a powerful drug with quite possible future side effects, why haven't I tried reducing the dose at least to the usual entry level of 100mgs/day.
The answer is I am enjoying great quality of life and think it too risky to rock the boat, my cardiologist does not favour a change nor PIP and I have read here that some people manage up to 30 years without a problem. I do however have annual blood tests re kidney etc and any problems here may well prompt a change in dose.
Spot on secondtry - I certainly rocked my boat with trying to reduce and think I was fortunate that my rhythm settled quickly when I returned to the higher dose.
I started on 2x50 Flec… this wasn’t quite enough so progressed to 2x100 and that has always worked well .
I do sometimes take 50 morning 100 evening depending upon what my physical activity will be on that day…. Eg if a rest day then I’m taking less ..
I still swim / run keep very fit but have lowered the overall training time compared to what I used to do .
During a period of illness a few years ago ( diarrhoea from contaminated water- which lasted for about 3 months ) I struggled to exercise at all .
My fitness dropped off obviously and my resting heart rate rose ( from high 30s to low/ mid40s ) … I cut the flec right down and was taking a total of 50-100 for the day for a good while with no Afib episode … eventually I recovered and started training a bit more , the RHR began to drop and sure enough I had an episode … so I upped the dose back to 150/200 as I am still on now ..
For me , the raising of RHR due to the body fighting off illness seemed to help with Afib ..
Anyway , enough of my ramblings …
Experiment yes , but do so very gradually .
I do also think that you need a minimal amount of flecainide in the system at all times .. ( I also tried taking 150 at night only and this didn’t work very well ) .
Cut back ,and if it works ,start cutting those tablets in half so you are having a dose morning and night .
I would just caution about splitting any pill before checking with your pharmacist for various reasons. Ask you doctor to prescribe a lower dose pill instead, more expensive but much safer. Flec comes in 3 different doses - 50mg, 100mg & 150mg.
Advice about splitting tablets:-
Pills or tablets that are scored with a line or indentation down the middle are usually okay to split in half. Not all strengths or formulations of the same medicine may be scored. Coated pills or tablets that are slowly released in your body should not be cut.
You should only split one pill at a time and use up both halves before splitting another pill. Do not split all your tabs at once.
Capsules should not be split, crushed or opened unless recommended by your healthcare provider.
Even if your pill is scored, check with your pharmacist first to be sure you can safely cut it in half before you take it. If you change manufacturers or strengths of medicine, check again before you split it.
I curently tak two times a day .50. Maybe just stay on this low dose instead of cutting to one times a day. Just confused as to what to do. How long did you take .50 before progressing to thoe higher dose?
I had a mini stroke in 2018 and diagnosed with AF. Since then I've had an ablation and was on amiodarone, metoprolol, and eliquis. I got in normal sinus rhythm in 2001 for a couple months and since then the only heart medication I'm still on is my Eliquis. Word of advice if you've ever had an AF episode or had persistent AF for any length of time you need to take an anti-coagulant for the rest of your life. AF is a weird condition in that once you have it even though it goes away and stays away for awhile it almost ALWAYS comes back later on down the road sometimes years away. Unfortunately just 1 episode can cause a clot and a stroke hence the need for Eliquis long term. Good luck. Mike
I was previously on flecainide twice a day and after about 18 months reduced to 1 a day and then 1 every other day over a period of 2 weeks and stopped it after that. That was around the beginning of 2022. Cardiologist advised me only to take flecainide as a PIP if needed. I’ve had about 3 AF episodes since, all brief and back in sinus rhythm after taking the PIP. Would say that for me stopping the bi daily flecainide was welcome as I prefer to only take one when needed. Good luck with your treatment,
I like your question about what causes it to progress I’ll be curious to see what others say about it. I understand they do not always get the spot to begin with but why or why does it continue to pop out other places? Now that I have my pacemaker, I realize it cannot do further damage to my heart or can it? If you keep getting what I consider shorts in my electrical system, even though it is not controlling the heart any longer. I would think that would still be harmful. I went for well over a week recently feeling my flutter and even got a strong kick or two out of nowhere. It felt as though a horse kicked me in the chest. Maybe it cannot do further harm but it still is miserable to go through so many unanswered questions and yet there’s over 300,000 people in the US with a fib right now. They expect those numbers to double in the near future I realize they cannot cure it because it is different for everyone. It’s not just one thing having a problem it’s like trying to find a short in your house when it is somewhere behind two floors of house with lots of walls. You would think by now, though they could at least get meds to quiet it down, I wish more people would take the time to try to understand how awful it can be to those of us who have it. Even if they try, they just don’t get it. If you tell them, you have a back pain they understand but when it comes to a fib people seem to think it is unimportant. The other night I got hit with a bad bout of it. My cousin had asked me a question I told him hold on I’m hurting with some serious flutter. He got all snippy and said oh I won’t bother you then as if I had insulted him. I feel like if I don’t flop on the floor no one gets how we feel and it really can hurt. Most of the time my flutter is just annoying. My a fib itself no longer acts up. It’s still awful. I’m so glad we have this group so we can be with others who understand.
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