AF progression - halted or simply masked by drug treatment?

[Pikaia]

I have a possibly naive question, brought on by reading something BobD posted in the past week or so about AF begetting AF.

Does drug treatment (e.g. Flecainide) merely mask AF progression, or does it slow it down?

[BobD Volunteer]

Tricky question and one I would lean towards Prof Schilling for answers.

In a lecture a couple of years ago Richard stated that all treatment for AF was about improving quality of life (QOL). He also stated that there was little difference in outcome between rate and rhythm control --- only which the patient found most helpful.

Uncontrolled AF can lead to other heart conditions such as enlarged atrium and even heart failure but by managing the symptoms then these co morbidities may be avoided. Ablation does not cure AF in my opinion but merely removes the symptoms. The underlying condition and pre-disposition still remains which is why patients often need repeat ablations over time.

Now to try to answer your main question some people find that Flecainide works for them for some years and then starts to fail. They often say "it isn't working any more. " This drug is not like opiates which have receptors in the body. Once those receptors are full they multiply so you need more drugs for the same effect. Flecainide has no receptors so if after time breakthrough occurs then it can be assumed that the AF has become worse rather than the drug failing. Many people find that they are fine on the drug for many years such is the mongrel nature of this condition whilst others never find satisfaction. There is no yes or no answer to your question I fear but I hope this helps explain a little.

Bob

[Pikaia in reply to BobD]

Thanks BobD , for such a clear reply. It's a great help having you and everyone else on here to discuss and debate all of this.

[Finvola]

Not a naive question at all and last year I asked my EP a similar question as 'how can my AF progress if it is completely suppressed by Flecainide? He said that progression of AF is poorly understood as it depends on so many factors but in my particular case, it will be likely to progress because of natural ageing.

As cell ageing is so specific to an individual, he could give no more help than that. I was quite content with that thought, as so many other health issues will worsen with age. My feeling from the conversation was that AF continues to work and progress 'underneath' the control of the drug.

[Pikaia in reply to Finvola]

Thanks. I can imagine AF can worsen with age, but I guess it comes down to the mechanism of action. If the Flecanide is simply forcing the heart to beat rhythmically, then the AF can still be continuing to breakthrough to new electrical transmission pathways underneath, so the Flecanide will simply mask an ever progressing condition. My hope was and still is that the Flecanide would do more than that, and would stop the proliferation of electrical pathways, so the AF doesn't progress, but listening to these answers and searching through people's accounts of Flecanide and AF on here I have to admit that this hope is fading.

[dedeottie]

A very interesting question. I have wondered this for a while. My E.P. says that if flecanide is working and therefore I am not having A.F. that it cant perpetuate itself. He also says that I am unlikely to get a bloodclot if flecanide is working. However, I know that there are different opinions on this and personally I am inclined to listen to professor Schilling on this. X

[Pikaia in reply to dedeottie]

What hope do we have of figuring this out when the experts are divided. I guess all we can do is provide feedback and raise money for more research.

[Hidden]

That's an interesting point.

In my case, I've had AF for say 20 years, 15 since being diagnosed by which time it was bad. During the time when I wasn't diagnosed, looking back, the condiion worsened quickly and I think it accelerated in the last 6 months or so, and even became 24/7 for while towards the end.

Then I started on drugs, then ablation, then back on drugs again.

I would say that, for me, the treatments have slowed the progression down massively. So I still think its progressing, but very slowly instead of very quickly.

Koll

[Pikaia in reply to Hidden]

Thanks. I guess I'm trying to understand whether, long-term (as I'm only 38!), it's better to first try an ablation (if suitable) or to try medication in the hope ablation success rates improve.

Good to hear the various methods have improved your QoL over 20 years though. Something that gives me hope.

[BobD Volunteer]

Pikala I think it true to say that most experts feel that early intervention by ablation stands the best chance of improving QOL. Yes this must be considered part of an ongoing treatment plan as AF may well return in the future but at your age a lifetime of drugs is not a great idea.

We all hope that ablation success rates will improve with time and eight years ago I opined that if we compared aviation development with AF treatment and the first ablation equalled the Wright Brothers first flight in 1909 then we were about level with the first world war. I hoped that we might by now have at least reached Second world war levels but sadly no and we are not yet in the jet age. Prof Schilling argued with me at the time that things had reached a plateau from which he saw no progress and apart from one or two changes in technology mainly for the benefit of the EP rather than improved outcomes he seems to have been right.

Cryo ablation provides some good success in simple cases of AF and also enables rather more ablations to be performed . Sabine Ernst has been working on some new ideas for a few years and currently doing trials using ablation on not just the expected areas but also some nerve ganglions. We have not yet seen formal results from this ongoing trial but at least two of our members are part of it.

My point really is that OK at some point in the future I am sure we will find the answer but why wait until your AF has progressed to a stage where it is more difficult to treat. Not much is going to change in the next few years for sure.

Bob

[Pikaia in reply to BobD]

Thanks for the reply BobD . I was initially quite keen on the idea of an ablation, considering it as close to a 'fix' as we can get, but since diagnosis and researching more about AF and ablations I have begun to think that 38 is a young age to be burning scars onto a heart.

I take your point about AF progression reducing the chance of a successful ablation, which I guess brings me back to my original question. If medication doesn't halt AF progression, but rather masks it instead, then there appears to be little benefit to going down the medication route first and delaying an ablation (unless there are other factors).

[destept in reply to BobD]

Hi Bob, I consider afib like other old age comorbidities like HBP, sleep apnea, diabetes, brain health, inactivity,sleep disorders,etc.I know that even some genetics could be handled by epigenetics=lifestyle.It is hard but I think most effort should be put there.

[souljacs4]

Please read a post on here titled (Follow up after ablation and endurance test) very positive posts about a new kind of ablation being done by Sabine Ernst also about research programmes there are a lot of people out there trying to get to the cause of this dam thing. and you are young enough to be one of those people who I believe will benefit from the ongoing research. chin up its not all bad

[Pikaia in reply to souljacs4]

Thanks souljacs4 .

[Hidden]

A very interesting conversation not at all naive but very perceptive. Ablation seems to help some more than others. I've had 2 and to me they have not helped at all there is an underlying problem which is not resolved. Flecanide also does not stop the episodes but it does control the blips and contain it most of the time. For me when the specialists from one department will talk to the other department some progress could be made.

[Pikaia in reply to Hidden]

Thanks. It's such a complex condition, it's no wonder cardiologists disagree about the best course of treatment.

[maxred1]

Great question, and actually it is the point that should concern us all most. According to my cardiologist, , I am cured. They gave me copious amounts of medication, are controlling my rate, so bingo. Dr Schilling, tells me, sorry, you are not, you are in parmanent AF, with some other complications, and it is as good as it gets for you. My episodes, through my life style changes, are less, but when they arrive, are more pronounced and severe. Six months ago I was given a less that 30% chance of ablation success, and now actually, that percentage is probably nil. I remain convinced that weight loss, no alcohol, stress free lifestyle, combined with the correct medication, taken in a regular pattern, gives one the best chance at QOL. As I type this, I am feeling pretty crap, but have been feeling well for over 6 weeks. Have not a clue what has brought on this latest episode. My fear, as the OP, is that the Catch 22 exists. You have very symptomatic AF. You take medication, Rate or rhythm, take your pick, however, the underlying issues are only being masked. When I first met the cardiologist, she told me, I cannot fix you, but I can make you feel better. I balked at that, but actually, I think she was right. Problem is, I actually never feel that better........to clarify, I did not go forward for ablation.

[cuore in reply to maxred1]

The success of an ablation is dependent whether the EP can ablate all the trigger points, specifically beyond the pulmonary veins.

There has recently been developed , I believe out of Bordeau, a cardioinsight 3D system vest (ECGI). To quote, "The CardioInsight mapping system is most effective in cases of persistent or long-standing persistent A-Fib where non-PV triggers have developed." It's a one time use 252-electrode sensor vest.

It is used in Europe and it has been approved for use in the U.S. in July 2016. Bordeau, France would be using this vest. I thought I would ass on this information for your interest should you not have come across it already.

[Pikaia in reply to maxred1]

Thanks for your post. I guess ablation works for some but not others. However, the point that medication simply masks rather than treats, is concerning to me. I don't want to miss the window of opportunity for a 'successful' ablation.

[Kateyarm]

I have monitored my AF attacks to try and work out what helps or is it just a case of going through the awful process. I take 3.7mg of bisoprolol daily and flecainide when I get an attack which can last normally up to 9 hours. What I have realized is that flecainide is masking a lot of the symptoms and that I am far from free of the attack. I know this particularly by the fact that although I don't feel the heart racing as much I still get breathless and find it hard to do anything until the attack passes, consistently 9 hours minimum. What I have found to really help avoiding the symptoms of attack, because I don't think the medication is curative in any way only giving a degree of masking control, is taking Magnesium Phosphate. I attend alternative therapy as well as the NHS and it has been their mixture of minerals and vitamins that has turned my life around. However, I still take the bisoprolol but not the anticoagulants. I am hoping to slowly reduce the need for bisoprolol. Now 18 months into AF I feel great, I don't worry any more about getting an attack and when one does sneak up on me I just accept this is halting my activity for the day and relax. I have changed my diet, although I am slim it was the types of sugary and starchy food that was bad for me, I cut out coffee but still enjoy an occasional glass of wine with no ill effect. BobD makes a lot of very good points and I agree with much of what he says. I am still working 50 hours per week and enjoying life and not allowing the AF to weaken my resolve to have as good a life as I can manage. Taking the medication is about how it helps you, if it doesn't help or makes you worse, stop and find something that will help. I know Magnesium is now being recommended as a real support for AF among other things. Being fully informed is the best medicine and this forum is great for giving support and information.

Kateyarm

[djbgatekeeper in reply to Kateyarm]

Hi there.. can i just ask what dosage of Magnesium Phosphate do you use and how often please? I have never used this ... currently on Flecainide and Bisoprolol which works most of the time but some weeks are still terrible... thank you 😊

[Kateyarm in reply to djbgatekeeper]

Hi djbgatekeeper

I take four tablets per day. Each tablet is 65mg and the recommended is 3 per day. When I first started taking MP I took 6 per day 2 morning/lunch/evening but when they tested me again they recommended I drop to 2 per day but I still take four 2 morning/evening and I feel so much better. It is definitely worth trying as magnesium is definitely linked to AF.

Kateyarm

[djbgatekeeper in reply to Kateyarm]

Thank you for taking the time to reply... have a nice weekwnd 😊

[cuore in reply to Kateyarm]

I thought you were supposed to take an anti-coagulate to help prevent stroke or are you in a category that you don't need it?

[6-7-70 in reply to Kateyarm]

I agree with your recommended alternative therapy and would very much appreciate if you can tell me more about it. What kind of therapy do you take ? At the moment i take Rythmonorm and Aspirine ( although I was prescribed to take anticoagulans, but I will think it over)

[Hidden]

Your 'naive' question has produced some really valuable comment, thank you and everyone for their contributions! I agree particularly with maxred1 and Kateyarm.

I Have Lone PAF. I have pursued Lifestyle changes, Alternative Medicine and Flecainide - the same dose 200mgs/day taken religiously at the same times over 3 years. Ablation didn't appeal.

My QOL for the last 2 years has been excellent, the only reservation is that I struggle to get 6+ restful hours sleep but that may have little to do with AF.

Getting to your question on the experience of Flecainide and what it does. Once on an increased dose, it stopped all AF but I felt the heart hadn't learnt any new lessons as the recovery felt fragile and I peed a lot late afternoon, like I still had AF but the beat was stable. However, simultaneously hitting it with supplements, much better diet, reduced stress, Mindfulness etc and two years on I don't pee a lot pm anymore and feel less AF begets less AF i.e. the heart has been retrained.

I would dearly like to come off the Flecainide but am wary as ageing (I am 63) will probably increase my AF propensity and I don't have full confidence that the lifestyle etc is sufficient to counter this on its own. Also, on a personal note I really love my job and to be interrupted would be a blow to QOL.

To summarise my experience, Fleacinide buys you time and advice suggests a combination off the right supplements and lifestyle could take over that role but not in every case and only if you have a lot of time, perseverance and patience!

Hope something in that long ramble helps.

[maxred1]

I would like to add to this thread. When I had my first CV, I reverted to SR for app 20 hours. Since then I have never been back to SR. At no stage did I feel better. This concerned my NHS EP, because he suggested that other patients, when they woke up, HAD noticed an immediate difference. This has a bearing on my ultimate decision to not take the ablation route. Life style changes, and reluctant medication was then my chosen route. Only time will tell if I was correct. Obviously if something else comes along in the interim, all options would be considered.