Persistent Afib - next stop Amiodorone - Atrial Fibrillati...

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Persistent Afib - next stop Amiodorone

Rainfern profile image
25 Replies

Following a short-lived success with cardioversion, my EP has prescribed Amiodarone 200mg daily. So not a massive dose. The waiting list for ablation is long, so this is a stop gap. And a lot of the drugs prescribed for paroxysmal AF are not much help for persistent AF - at least not as an antiarythmic which is what the aim is here. Chemical cardioversion. Now that has to be some hellofa powerful medication! But this EP is so keen to improve my QAL with my tiresome symptoms of fatigue and floppy fast heart beating - he thinks it's worth a try quite obviously. Along with a second CV if necessary. So picked up the prescription today and will be on the lookout for first signs of any damage - skin, eyes, thyroid, liver, and the list goes on and on!

But it must work for some people, and I'd love to hear from you! Also if there's any early signs for side effects I might miss. Buying myself a large sun hat and long sleeved shirts. And got some floaty ethnic dresses that cover up most of me and factor 50 for the rest!

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Rainfern
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25 Replies
Jalia profile image
Jalia

About 30 years ago I had my first encounter with AF......age 48. Without boring you with too much detail the cardiologist wanted me admitted straightaway which I refused. I agreed to try Amiodarone as an outpatient for 2 weeks and if I did not return to sinus rhythm I agreed to go in for the electrics! I clearly recall him saying to the nurse that I couldn't go around with a rate of 160. I think I am correct in saying that I returned to nsr on about day 8. I can't recall the dose.

I have been on Amiodarone several times since, the longest being about 18 months . In more recent years I've had a 24 hour Amio drip which failed to restore sinus rhythm much to the surprise of the ER consultant !

I can just reiterate what you have been told about covering up. It is really necessary and a good excuse to buy some lovely floaty ethnic dresses as you say !

Make sure you have regular blood tests but hopefully you will not be on this for too long.

JJHRT profile image
JJHRT in reply toJalia

Amiodarone isn’t known for restoring NSR but once you have enough in your system, which takes some time, if works great for maintaining rhythm following a cardioversion.

Rainfern profile image
Rainfern in reply toJJHRT

That’s not quite true. It may not always work, but then neither does electric cardioversion. It’s something EPs try as a means of restoring rhythm. If not then my excellent EP with a reputation to maintain is telling fibs which is a bit unlikely!

Buffafly profile image
Buffafly in reply toRainfern

It also helps to maintain NSR after cardioversion or ablation.

Jalia profile image
Jalia in reply toJJHRT

I beg to differ! I had a top cardiologist using Amiodarone to restore NSR in the first instance.

Rainfern profile image
Rainfern in reply toJalia

Thank you Jalia. Sorry missed your reply yesterday! It’s wonderful you had that time in NSR with help of amiodorone and no awful side effects. My EP who is very up to date on everything arrhythmia is emphatic about amiodorone being able to act act as a chemical cardioversion. And there’s you as proof, thank you!

Gumbie_Cat profile image
Gumbie_Cat

Crossing fingers that it works well for you! I was hoping to be put on that before a cardioversion and for a short time afterwards. However, I was told that would need to be on it for years, and another ablation isn’t a solution for me anyway. I would definitely take it in the short term as you’re doing, but didn’t fancy a lifetime of it.

Luckily the rate control seems to be working ok for me, though it does take some coming to terms with. I so much wanted a solution involving NSR. It’s as though my body is sort of getting used to the new rhythm. Then if things don’t work well this way, there’s always pace and ablate if it’s needed.

Rainfern profile image
Rainfern in reply toGumbie_Cat

Thank you Gumbiecat, it’s good to have some positive responses to taking amiodorone for the short term - first dose this morning, a bit scary! I hope all goes well for you with rhythm control.

CDreamer profile image
CDreamer

It worked for my husband who was out of options as ablation was not considered suitable as there were other considerations - heart valve leakages, didn’t respond to cardioversion etc.

Started Amiodarone 4 years ago - 200mg daily for persistent AF. It took 3 months but gradually he returned to NSR. Dose was reduced to 100mg daily 2 years ago, AF is now creeping back with a burden of 7% which is manageable. 6 months ago there were signs of Thyroid damage but that’s after over 3 years on the drug. It’s affective at stopping AF but as you obviously are aware, comes with it’s own problems.

However, used short term - ie: 3-6 months it is probably the most affective drug available for AF so maybe worth it, if you have absolutely no other available options.

Has pacemaker been suggested? Certainly worked for me - after 2 ablations Af returned anyways.

Rainfern profile image
Rainfern in reply toCDreamer

Thank you, that’s really helpful to know. I’m aware of pacemaker as an option further down the road, but waiting for a first ablation. Sounds like you have both been through a lot and glad to know things are more stable now for you.

Jajarunner profile image
Jajarunner

I'm on in since Feb following three failed ablations within 20 months, can't see the point of a third when they only lasted an average of 4 months each. My cardiologist says the serious side effects are rare in modern low doses and to make sure. I'm checked every six months via blood tests. I'm not a sun worshipper, being fair and havd skin cancer, so I use SPF 50 /5* sun cream but don't panic if you are outside for a bit without it. Even my dermatologist said 15 mins in the sun is okay (and good for vit D). I asked the same question as you about a year ago and got some great responses so you might want to hunt out that post. Good luck 🤞

Ppiman profile image
Ppiman

I was about to be given it but an ablation came my way. I wasn't able to take flecainide or stall for the fat atrial flutter I then had. I did a lot of research of the drug and it seems it is exceptionally good anti arrhythmic with few cardiac side effects compared with the others. Of course, that's to it composition, it contains toxic levels of iodine but in low does the evidence seems that it is very safe (search low dose amiodarone after and you will find this).

Vigilance of the kind you have suggested is important and keeping the length of treatment to the minimum but, otherwise, it seems, it is a highly effective and useful - and in worldwide terms - very commonly used drug.

Steve

Tellingfibs profile image
Tellingfibs

My brother was put onnAmiodarone some years ago, when he lived in Spain . Last year, he returned to the UK and his doctor took him off Amiodarone as he thought it was taking his blood pressure too low. My brother never noticed any side effects whilst he was taking it. He now takes Nebivolol. Maybe don’t anticipate problems, as I have read many people do well on Amiodarone when they are given it for a limited time. All the best.

Annie.

MalcolmCClark profile image
MalcolmCClark

I have been prescribed the drug but me personally could not tolerated the side effects so stopped.When side effects of a drug are worse than the symptoms then for me I consider quality of life.

I am 5 months post cryo ablation but for me ablation has not been effective and if anything my PAF and chest pain have got worse. I will probably need another one.

I do have other issues so things are quite complexed when considering treatment.

Saying all of that if something works and helps then stick with it.

So I can only give you my view on my personal experience and would never advise for anyone to go against medical advice.

Yes that contradicts what I choose to do but that's just me.

Rainfern profile image
Rainfern in reply toMalcolmCClark

Thank you Malcolm, these treatments are all so different depending on the individual. I’m giving the amiodorone a chance - but it does feel just like that - a chance! Sorry to hear your ablation wasn’t successful and hope you are finding a satisfactory route forward.

MalcolmCClark profile image
MalcolmCClark in reply toRainfern

Thanks for understanding.I am OK but with almost constant chest pain and bradycardia and my AF I worry about when I need to seek help.

I have got fed up going to A&E to only sit in a waiting room for up to 24 hours or more to only get sent home.

Just hope my cardiologist can give me some reassurance when I see him in about 2 weeks time. First appointment post ablation.

Hope you feel better on the meds and they help.

JJHRT profile image
JJHRT

On my second go around with Amiodarone. First time 18 months. This time over 2 years. Nothing else worked. 2 failed ablations. Potential dangerous side effects but well worth the risk in my opinion. Never felt better! I was in constant afib and also some vtach. No problems so far. I do see halos around lights at night and some sun sensitivity but that’s it. Liver enzymes were up a bit but lowering statin dose took care of that. Good luck!

Rainfern profile image
Rainfern in reply toJJHRT

Glad it has worked for you

kocoach profile image
kocoach

Hello, I've been on amiodarone for about 5 years now and my Dr. refuses to take me off of it despite my wishes to stop taking it. Thank GOD I've had no problems with it; yet. My question is, myself included, why go to the Drs. at all if we are not going to do as their life's learning and training has led to them to treat our conditions as they see fit, almost as we're trying to tell them they don't know what they're doing? I have heard so many people saying how bad amiodarone is but my EP Dr. Ronald Lo who is highly sought after by hospitals to practice at their respective hospitals tells me you most always hear about the bad reports of this med but hardly hear of the good it does many, many people. Frankly my sister was on Warfarin (cumiden) and I was terrified of being put on it but others on this forum who take it swear by it. All I can say is do and take what the Dr., EP says and of course be on the lookout for any interaction with other meds or changes in your body, after all you know you body better than anyone else does. Just my opinion. Have a Blessed Day

Rainfern profile image
Rainfern

It’s good to trust our doctors and to be informed at the same time. And good you’ve had no problems with amiodorone. Thank you for responding, the reassurance on this forum has been wonderful!

KootenayTrails profile image
KootenayTrails

I am also on amiodarone as a last resort by my EP to stop /lessen intensity of my daily PAF. Started me on 200mg three times daily for a week, the 200mg twice daily for three weeks, and next week 200mg daily until my May 31st ablation. Amiodarone has given my life back. I still get AF episodes every 2nd day or so, but now only 1/2hr to 3 hrs, and haven’t needed a cardioversion since starting on it. No side effects for me yet except lower heart rate (45’ish instead of 50’ish) and messing with my sleep, therefore more fatigue. Worth it though to have less and less intense ( no more fainting) AFib episodes. Previously very active, I can’t exercise at all now, but can walk/move around much better now that I’m in NSR more. Hear’s hoping it returns you to NSR and without side effects!

Rainfern profile image
Rainfern in reply toKootenayTrails

That's great your symptoms have been reduced and you've got your life back. Symptoms of Afib can be awful. My energy levels have dropped from being a fit 70 year old taking 8 mile walks and sharing an allotment to getting puffed on the stairs and dozing half the afternoon! Just in 6 months. My EP would have liked me to have an ablation sooner, but like everything theres a waiting list! Good luck with yours!

Lilypocket profile image
Lilypocket

I took it for 3 months after my ablation seemed not to have worked and I suffered a wide range of arrythmias. It put me back into NSR and gave a chance for my heart to heal. I have stayed in NSR since coming off it . Of course regular blood tests are required. For the sun exposure, I believe you only turn a weird colour after you have been on it for a longish period but of course vigilance is the way to go as we all react differently. I think it is a good drug for short periods if all else fails. I hope you don't have to wait too long for your ablation.

Take care.

Rainfern profile image
Rainfern in reply toLilypocket

Thank you Lilypocket, I really appreciate you sharing your experience and pleased to hear you've stayed in nsr with help of of ablation and amiodorone. Good luck and good health!

Lilypocket profile image
Lilypocket in reply toRainfern

Thanks! I think everone has a different opinion or experience of this drug so finally if your EP or Cardiologist thinks it is right for you and you respect their treatment and opinion the best is to follow their advice or it is too confusing. I think if it is only for a short time and keeps you in sinus rhythm until the ablation and possibly just after I think it is worth a try.Good luck whatever you decide .

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