My Continuous AF Experiment

[terryw]

I was diagnosed with AF in 2004 which is persistent. I had an angiogram (two minor 1-49% areas on report), and ablation for flutter in 2004. My major drugs have been Flecainide and Bisoprolol (rate). Each year I have had periods of AF, but these have been exceeded by longer periods of SR. Bisoprolol at 5mg has always slowed me down , and around two years ago I initiated a review with my GP to reduce it. The net outcome was that I am on the 2.5mg tablet and in continuous AF since around April 2018. Last year I arranged for a 24 hour and 48 hour ECG. The latter showed an average heart rate between 51 and 128 bpm. The former showed 51 and 103 bpm. At all times I was in AF. I had an Echocardiogram in November with the comment ‘your heart is working fine.’ Last Monday I walked 4.6 miles at an average 3.4 mph over mixed terrain, and Tuesday I swam 28 lengths in a 25metre pool all in AF.

I like to meet things head on, and I have found with AF there is no consistency of affect, and quite often knowledge. At the moment I am carrying out an experiment to see whether continuous AF is equal to, or better than, persistent AF for me. At 76 I am aging but at least now I can chase after my grandchildren which I could not do on 5mg. I would be interested if anyone else can add to my knowledge regarding this experiment. Are there any latent risks I am over-looking?

[rosyG]

Do you mean intermittent (Paroxysmal) versus persistent AF? I don't have persistent so will leave others to answer. If you mean what I have written then possibly PAF is preferable as it allows heart recovery time- but some people get used to persistent and don't notice it so feel happier!!

[terryw in reply to rosyG]

Hi rosyG. My AF lasts for over 7 days and only returns to SR when chemically helped.Terry

[Hidden]

You clearly have excellent cardio respiratory fitness. The exercise you take does not present a risk if you are otherwise “heart healthy” in my non medical opinion.

How are you going to measure your quality of life when you are in persistent vs continuous AF to use your words?

The cardiologists like to use the terms

Paroxysmal AF for episodes lasting up to 7 days

Persistent AF - over 7 days

Permanent AF after 12 months and when it is agreed that there will be no further attempts to get you back to sinus rhythm.

[terryw in reply to Hidden]

Hi oyster. That is one of the questions I have been considering. The line between persistent and continuous in my case is so fine as to be almost indeterminable. It is clouded by aging- am I naturally slowing down? However the difference between 5mg Bisoprolol with SR and 2.5mg Bisoprolol and continuous AF is clearer. I can run with the lower dose! I may be able to get back into SR with 3.75mg Bisoprolol and Flecainide (I am still on 200mg daily). Do I want to? If I do not can I stop Flecainide? I have found in life that it is the law of unexpected results that gives the most problems! If my quality of life deteriorated I could re- try a chemical route , and I have seen examples of an ablation dramatically improve the quality of life of an individual without 'curing' AF.

The spectrum of the impact of AF on the quality of life varies considerably. Conversley drugs can have an adverse affect. I am carrying out a personal test and my ECG and Echocardiogram were to ensure that I was fit and ready for it. At some point I can decide to stay as I am , stop Flecainide, or revert to 3.75mg or 5mg Bisoprolol.

I would advise everyone on this forum to get some knowledge of their condition, and be ready to challenge statements. As an example oyster not all Cardiologists know the correct definition of persisitent AF! Terry

[Hidden in reply to terryw]

Well I’m with you there terryw , about not accepting advice without question.

I’d like to be in your situation where I could stop my permanent AF by increasing my dose of beta blocker. That must be unusual.

I have been experimenting with my dose of Nebivolol. The cardio started me on 7.5 mgs, and I have reduced slowly in stages to 2.5 mgs. My AF has not speeded up, and I feel a lot better.

[terryw in reply to Hidden]

oyster.You and I are on the same path regarding proactively reviewing and getting amended our drug dosage. If it helps I have been generally kept in SR by Flecainide and 5mg (and possibly 3.75mg) Bisoprolol.It was reducing down to 2.5mg that seems to have kept me in continuous AF (I use this term rather than permanent for the purists). In my case the AF does not materially make a difference, but not being on 5mg Bisoprolol does. There has not been any significant change to my heart rate and blood pressure. Feeling a lot better as you do shows the benefit of your decision. The pupose of my comment was to see whether there was any future risks to the path I am taking ( e.g. AF begets AF but possibly not for everyone!). My GP and the Cardiologist I saw supported my decision. Good luck for the future and keep challenging your condition and the Specialists! Terry

[Jefferson57]

Not sure I concur with unilaterally changing your prescribed meds. Get it wrong and you get a life destroying stroke.

Good luck to you, regardless.

[terryw]

Hi Jefferson57. As I pointed out I do not do anything unilaterally ( well very rarely!). I discussed the matter with my GP first and got his agreement. He then arranged an appointment with a Cardiologist (I saw different ones at each appointment -the Consultant and then his Registrar). I was in AF and on the lower dosage at both meetings and during the relevant tests. I discussed my course of action with them and they had no objections. I think that one factor was because my heart rate was well controlled. terryw

[R1100S1]

Hi Terry

Have been in permanent AF for about 5 years.

I am only 69

Had a cardio version which had a short term success

I walk approximately 3.5 miles 5 days a week and that's in a hilly part of West Yorkshire I have a lung condition called bronchiectasis which confuses me as to which is limiting my walking ability

Heart rate varies between 60 and 120.

I am on losartan and slozem for the AF, trying beta blockers did not work as they completely zonked me out.

Seems we are all different in reaction to the condition and the drugs.

It's sunny and mild just now so may go for a ride on my motorbike.

Keep up the good fight

[terryw]

Hi R1100S1 Your are a man after my own heart! I am assuming you are a man -women would say that they have more sense. There are more hills in Bedfordshire than Essex where I was before , but Yorkshire would be too much of a challenge. I intend growing old disgracefully! Keep on Rocking! terryw.