What's my best next step?

[ParisChau]

I'm new here. I'm a pretty healthy 50 year old and I was diagnosed with persistent AF a couple of months ago. Bit of a shock as I was feeling fine. It was picked up by my doctor at a regular check up. I was put on Bisoprolol and Xarelto that calmed the heart rate. Then Amiodarone 200mg a month ago and have gone back into NSR a couple of days ago. Anyone have any thoughts on best next steps? I have a appointment to scope out an ablation but as I feel fine I worry it is not the right decision. Staying long term on Amiodarone doesn't seem to be a good idea. Anyone experience with other alternatives?

[CDreamer]

All treatments have risks & benefits so it’s about looking up the very limited options:- drugs = effectiveness of controlling AF v side effects - which can be very toxic - especially Amiodarone if taken long term,

Ablation = can have limited effectiveness, invasive procedure therefore some risks involved but to my think much preferable to taking drugs for life;

living with AF - many live with permanent AF,

Finally Pacemaker - which helped me.

Lifestyle measures are usually the 1st option so looking at sleep, stress, exercise & nutrition & any underlying conditions.

Have you explored these?

Pacemaker with ablation of the AV node - quite a big decision which leaves you Pacemaker dependant but can improve QOL for those for whom the previous options didn’t work.

All treatments tend to be for QOL rather than Life saving or life prolonging so elective treatments.

I would suggest for insights on all aspects to read the AFA literature & book - The AFib Cure before talking further with your Doctors about other interventions, then at least you are talking from an informed base.

Best wishes CD

[Hidden]

It's great that you have gone back into NSR from persistent AF. It would be useful for you to discuss what the next step of the plan is with your doctor. Do they intend keeping you on amiodarone long-term or will they be stopping it at some point if you remain in NSR?

It might be of benefit to have an advance discussion about ablation in case the AF recurs, even if you feel an ablation procedure isn't something you would need at the moment.

Meanwhile, I'd advise working on anything lifestyle related that might help reduce the likelyhood of futher AF episodes - alcohol, sleep, weight loss, nutrition etc.

[ParisChau in reply to Hidden]

Thanks! that is one of my questions now - What happens if I go off the Amiodarone? Will I just go back into Afib? Does anyone have experience going off Amiodarone?

[CDreamer in reply to ParisChau]

You may find this thread I posted about titrating down from Amiodarone - pay particular attention to the comments from Jonathon Pitts Crick.

healthunlocked.com/afassoci...

As an update my husband had his echo - all good and still stable on 100mg/day maintenance dose.

[Hidden]

Hi Paris and welcome to the forum. I wonder where you are from mainly cos of your name and calling Rivaroxaban Xarelto. It matters not, but different countries often do things in different ways. Here in the UK, newly diagnosed folk with persistent AF are generally offered a cardioversion to see if they can revert back to sinus rhythm. You are right, whilst amiodarone is a highly effective rhythm drug, it is often referred to as the drug of last resort and for various reasons, it’s best not to use it long term. Some do, but they require very regular blood tests to ensure there is no long term harm.

Regardless of all that, it has been established that you can revert to sinus rhythm which is good news because it does mean you are more likely to respond better to an ablation if that is a route you decide to take. You are relatively young and may not want to be dependent on quite potent drugs for the rest of your life. Although any invasive procedure comes with risks and whilst total, everlasting success cannot be guaranteed, the majority of folk who opt for an ablation rarely regret having one as is discussed in this post:

healthunlocked.com/afassoci...

You need to bear in mind that forums generally attract people who are experiencing problems whereas those who are happy with their treatment tend to disappear and get on with the rest of their lives so I’ll leave it to you to decide whether or not ablation(s) work well for most.

A couple of very important things to consider are to try and establish what might have caused you to have AF. In so many cases the cause can be connected with lifestyle issues such as alcohol, diet, excessive exercise, the list goes on but the remedies are fairly obvious. The other point is that AF is generally a progressive condition which means that episodes occur more regularly over time and very often, AF becomes persistent/permanent. As you have experienced, it can be managed without necessarily having an adverse effect but it does mean a lifetime of medication and it their effectiveness may vary.

If I were you, I would ask to be referred to an Electrophysiologist, (a cardiologist who specialises in arrhythmias) to establish what is the best treatment plan for you. I hope this helps, and there are lots of people here who help ......

[ParisChau in reply to Hidden]

Well spotted - I'm in Paris. I think my cardiologist was loading me up with Amiodarone in case we tried a cardioversion and it has done the work on its own. We immediately spoke about ablation - my hesitation is just that I feel totally fine, had no symptoms when I was in persistent Afib.

[Hidden in reply to ParisChau]

I know many people in persistent AF who lead normal lives without any problems but the majority are in their 70’s. It’s a difficult decision to make but here in the UK, waiting times for an ablation can easily be 12 months on the NHS so if it’s not going to done privately, I often suggest going on the list on the basis you can always change your mind. It really is a personal choice. The other factor is that if it’s private, there may be financial motives for wanting you to have an ablation. I wish you well in your dilemma. Just in case you decide to proceed, I’ve added two links which you might find helpful.

heartrhythmalliance.org/res...

heartrhythmalliance.org/res...

[The_Lord_is_with_Us]

I was just a bit older than you when I came down with ATRIAL Flutter (later hit with AFIB, too). I was active. Actually mid way through an exercycle routine when it hit. Quite shocked!

I tried lifestyle and natural therapies, but it was aggressive ... and began to last longer and come sooner. Eventually, it was 3 times a week with 2 or 3 cardioversions a month. Costly and a real annoyance.

Next strategy, Flecainide as pill-in-pocket worked quite well, but that didn't keep the frequent attacks away. At least I didn't have to go to emergency anymore.

So, I researched continuous Flecainide. Cardiology nurse said they had plenty of patients on it for years with pretty good results. However, the literature said it could just stop working right when you need it most .... and the longer you're on it, the more the heart negatively remodels with fibrosis (which makes ablation less effective).

I was through with it! Even though the Cardiologist tried to dissuade me because of risks ... I scheduled the first of my 4 ablations.

First one got rid of flutter for good. 2nd one (first AFIB ablation) failed after 9 months. Went right back in for another. That one gave me 10 glorious years of peace. Then, AFIB returned last AUG.

Immediately scheduled ablation and had that in OCT. Everything about new ablation was better than the old. Quick healing .... mobile right after surgery ... no pains or problems. Have to give credit to new tech and my EP, who is one of the best in the world.

If I were in your shoes .... I wouldn't hesitate to book an ablation ASAP. Just go with the best EP you can source. Especially if you read the book recommended above THE AFIB CURE and none of his recommended lifestyle tactics work. BTW .... he recommends ablation.

Good Luck! in charting your course forward . . .

[Doggiemomma]

Adding what I was told about remodeling the heart... I asked my EP this specific question and he said Flecainide/long term use of Flecainide does not cause any long term heart issues... it's atrial fibrillation that can cause long term heart "remodeling." So now who do we believe?

[Hidden in reply to Doggiemomma]

As far as I know there are two changes which can occur in the atrial tissues with frequent or persisting AF. Firstly there can be a change in the way electrical activity moves through the cells as the heart gets "used" to AF, so that further AF becomes more likely. Secondly once the atria get dilated or stretched fibrosis between the cells can develop. I'm not aware that flecainide itself causes remodelling - but if AF is occurring despite flecainide then that AF can cause the heart to remodel.

[Doggiemomma in reply to Hidden]

Thanks for expanding on this!

[ParisChau]

Thanks all for the replies. Its so helpful to hear other peoples experience.

[Hidden]

My situation is a little different to yours as I have paroxysmal AF, but it's similar in that I'm relatively young and I'm going to have to decide whether or not to have an ablation in the hope of avoiding long-term drug treatment.

At the moment on medication I seem to be in NSR for the vast majority of the time, so it's not going to be an easy decision to make - there is a chance I could be no better off, or possibly worse, after an ablation.

[ParisChau in reply to Hidden]

Same here. It's hard to imagine getting the surgery if you are in NSR and feeling ok with drugs. It a good point but remodelling - takes the pressure off deciding immediately.

[TracyAdmin Partner]

Welcome to the Forum - I am sure all the Members will welcome you and offer great advice and information, but if you need any help, the Patient Services Team are happy to help at the A F Association heartrhythmalliance.org/afa...