Titrating down from Amiodarone: About 2 years... - AF Association

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Titrating down from Amiodarone

CDreamer
CDreamer

About 2 years ago my OH was in a catch 22 situation. At 85 he was in persistent AF with aortic stenosis with an EF of 35% and quite symptomatic with deteriorating QOL. After angiogram established there were no blockages a cardioversion was arranged to see if NSR was possible and Amiodarone started 2 weeks prior to the CV - which failed to establish NSR after 3 attempts. Well one attempt did work - for 7 seconds.

So the options came down to possible ablation which given age and the failed CV seemed an unlikely option to be of benefit or Amiodarone.

2 years on and he has been on Amiodarone with no side affects but like many, doesn’t want to continue to take this drug because of the side affects. An echocardiogram should have been performed 12 months ago, but COVID and lockdowns put paid to that.

QOL improved quite dramatically after a few months of taking Amiodarone as gradually, and it was a gradual process, NSR became sustained after about 3 months of taking Amiodarone at the maximum dose. After 12 months OH decided to try reducing the dose and GP agreed, wrote to EP who also agreed and so gradually, very gradually dose is now down to 100mg - maintenance dose.

Now OH wants to stop Amiodarone so has been in discussion with GP. He has had no affects from the drug, Thyroid function is monitored every 3 months as are kidney & liver and he isn’t symptomatic.

So - given the circumstances what would you do?

How do you calculate the risk of both staying on the drug whilst showing no sign of toxicity against risk of stopping and AF returning in which case the risk of aortic stenosis and heart failure with increasing symptoms would be quite high?

27 Replies

Hi, I would carry on titration, slowly & keep a check on his heart rate, heart rate device on wrist would be a good idea, have you not been offered flecanide?

CDreamer
CDreamer in reply to Nugger

Way beyond Flecainide which is nearly as toxic and not as efficacious. The point is that age and other conditions mean there are risks in both options but how do you calculate the biggest risk. It seems no-one knows but the consensus is better the devil you know.

I’m 74 years old and have been on amiodarone for several years, now down to 100mg, with no discerned I’ll-effects. I tried coming off it, but the AF returned. I’ll stick with it as long as I’m symptom-free.

Thanks, that’s my fear and if it did the aortic stenosis would return.

Hidden
Hidden

At 85, and assuming no pulmonary or ophthalmic toxicity, I would continue the amiodarone and ask whether TAVR was an option. Is there a PM in the mix here?

CDreamer
CDreamer in reply to Hidden

Thanks for the suggestion. TAVR was suggested but EP wanted to see which was chicken and egg and turned out the AF caused the stenosis and once NRS established, the EF returned to about 50%.

Hidden
Hidden in reply to CDreamer

AF doesn't cause aortic stenosis (AS), but can reduce the left ventricular ejection fraction (LVEF) in the face of AS.

The gradient across the aortic valve is one criterion for surgery. The link below may be of interest.

TAVR considered in isolation, can improve quality of life (QOL) and longevity, but with some risk. If it is to be done, it would be better sooner rather than later I imagine.

AFib may return despite amiodarone (and/or TAVR). Pace and ablate may then be an option. Does he have a pacemaker (PM)?

Is your husband content with his current QOL?

What do you think he should do?

cdt.amegroups.com/article/v...).

CDreamer
CDreamer in reply to Hidden

Having had all the tests, scans and discounted the TAVR as too high risk:benefit & the fact we can’t get an echocardiogram in the present lockdown we can only go on symptoms or lack of, bloods, ECG & QOL - which at the moment is acceptable for an 87 year old, I think if it ain’t broke done fix it.

Having read Jonathon Pitt Cricks reply below, I am encouraged that this is an acceptable option for the time being.

Thanks for your input. It’s always useful to get various views as I think it helps clarify one’s own mind.

Yes he has had a PM for the last 7 years to treat SSS. Otherwise fit and healthy.

My Dad, at 88 was on amiodarone for several months about 3 years ago. He had a successful cardioversion and was able to come off amiodarone, but has now gone back into permanent AF. Not sure when this happened exactly as he has been monitored properly for a while. However, in the last year, he has shown signs of lung scarring and has had skin issues which mean that he cannot go out into the sun at all. There is a suspected diagnosis of lupus, but as we can't see any consultants, I don't know whether they have tested his blood and whether the diagnosis is confirmed. I asked his heart consultant whether these symptoms could be as a result of taking amiodarone and was told that this was unlikely as the symptoms have only just occurred and he was only on the medication for a short while. I don't suppose this helps you, but all information is useful?

CDreamer
CDreamer in reply to scool

Thanks for your reply. My husband has had a number of BCC’s removed but they were as a result of living an outdoor life in the tropics for many years. He is monitored well and there are no signs of toxicity.

Hmm, that's a difficult one CD. I knew someone who was on Amiodarone for something like 8 years with no ill effects and I believe you know my story with this drug.

In his situation I would stay on the 100mg dose for a few months, see how he gets on and then perhaps reduce to 75mg for another few months and so on until he's completely off of it. If he comes off of this drug too quickly I fear his AF may well return.

Jean

Thanks Jean - that’s the question we asked as well but the reply was that below 100mg it wouldn’t be effective and as you will know, 100g tablets are the smallest dose and although you can cut in half, quartering such a small tablet is not easy.

Just thoughts.

The whole purpose of monitoring which is what they are doing, is to nip any problem in the bud. I'm on Dronedarone which is monitored every month for 6 months and then something like every 6 months and so on. My point being is that there are risks of damage involved in many drugs, Amiodarone seems to be the one that gets a bad press. Having said that; Amiodarone seems to be a drug that has a better success rate than others, unfortunately, it also seems to have a [potential] worse downside than most. In your husbands case, he is showing no side effects and it is doing the job as intended.

Your husband may very well be one of those people that we have all known ie the smoker, who smoked 60 a day all their lives and lived to be 100, basically they buck the trend. He has to balance as to whether he is willing to chance his symptoms coming back, or as they say - if it ain't broke, don't fix it.

The general consensus may very well be that Amiodarone can be a problem, however, it is still bring prescribed, it has obviously passed tests, there are people who have been on it for yrs and yrs without a problem and your husband who is also on it, is passing the required tests. It might be wise to press him, to see if he is noticing or experiencing any changes that he thinks are down to Amiodarone (maybe something he is not telling you), other than that stick with it, as he is being checked, checked & checked. Good luck x

CDreamer
CDreamer in reply to john6

Thanks for the thoughts - spot on!

Years ago I believed that 100 mg daily dose of amiodarone would have little beneficial effect but a colleague at a neighboring hospital was using this dose on his older patients some of whom attended my clinic. I reassured several of them that their absence of AF must be because the cause had now gone away (e.g. a previous chest infection) and they could therefore discontinue the treatment to avoid possible side-effects in the future. After a while I noticed that most of them came back having reverted to AF – so I realised that this dose really was having an effect (and no side-effects). Since then I have used this dose successfully, especially after having gained control using the higher dose, and it seems to work well long-term.

So, in summary, I would suggest that he continue on the low dose provided it is not having any adverse effects.

Thank you very much for that insightful & reassuring comment.

PS: don't forget to re-arrange the echocardiogram. TAVI is a good treatment for AS but you don't want to wait until the LV has given up (i.e. progressively dilating) because it becomes much more risky then.

Yes we are pushing for that but not getting very far unfortunately.

I read out your responses which my husband paid attention to and found extremely helpful. Thank you again. We will continue to push for the echocardiogram.

Sorry to hear your OH has been waiting so long for an echo. I had one last October about 3 weeks after I had seen the Cardiac GP. He was suggesting starting me on Entresto but wanted to check heart function first. However, a friend living in the same area has been waiting a long time but she has no actual history of heart disease although has other conditions and there is obviously some concern about her heart function. She was pretty upset when I had mine when she had been waiting for so long. Hope OH can get one soon.

My feelings about this are much the same as my feelings about the vaccine - at an advanced age it is a bit late to worry about consequences later. I think he should continue based on the fact that he is being closely monitored on a maintenance dose and the probable adverse effects of stopping are worse? than the possible adverse effects of continuing. Makes me realise how lucky I am with my 85 year old! Best wishes whatever you decide 💜

CDreamer
CDreamer in reply to Buffafly

Thank you. It is reassuring to have your input.

As we age the decisions of this sort tend to get harder as weighing up the risk: benefits becomes more complex. My fear is what would happen if he stopped whereas his is more what about the affects of continuing.

So much harder to counsel another when it’s a loved one and obviously it needs to be their decision so I just want to be clear in my own mind and present a coherent rather than emotional response.

Wow, thanks to everyone for these thoughts, very encouraging

I'm on Amiodarone after a major aortic operation sent me back in to AF after 15 years free following an ablation. Been on it 3 years in more or less NSR (the rate wanders though) and like everyone, trying to get off it, though no noticeable side effects and 6 monthly bloods are ok. I've tried a slow change from 200 down to average 150 mg or so with no increase in the AF symptoms, but they returned when I went further (though relatively quickly, weeks). I've also tried a sudden change from 200 to 100 on my Cardio's advice but after 10 days I could tell it was brewing up and reverted to 200. I have since had the odd week on 100 then back to 200, again, no problems. So I think I will go back to 150 slowly and stay there for some months before trying to go further, also see if this changes the HR variations.

I'm in my early 50s and was on Amiodarone for nearly 3 years. I lost 4 stone so my cardiologist, at my suggestion, agreed to try my coming off it. I lasted for 8 months to the day in NSR and went back into AF whilst on my exercise bike. Had another cardioversion last August which was successful. (Now on list for ablation) Cardiologist then decided to reduce my dose to100mg in November. That resulted in back into AF just before Christmas. Ablation was supposed to be expedited after that but then Covid cases have risen in hospitals so just having to live with it at the moment.

CDreamer
CDreamer in reply to Ducky2003

I hope that your ablation comes round very soon and is successful for you.

Ducky2003
Ducky2003 in reply to CDreamer

Thank you. They had thought it may be February but it's not looking likely now.

Thanks for all your replies.

Follow Up - - Result! Echocardiogram performed last week & just got the report.

Report - LV/RV - normal, no dilation.

Atria normal size.

No AF.

EF back up to 60%.

Recommended - continued monitoring.

Mild to moderate aortic stenosis with some regurge, also some minor Mitral valve & tricuspid regurgitation.

Follow up EP appointment later this week so we are much happier as doing well for 87 who had heart damage from Diptheria as a child.

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