Should I give up taking Amiodarone

[JackyMac]

I had a cardioversion last May and was delighted that it worked first time. I took 100mg Amiodarone daily until November when I slipped into AFib again. I did a 3 per day 200mg amiodarone for one week, 2 per day and then 1 per day and this hasn't sorted it.

My resting pulse is 75-80 (whereas normally under 50) and I'm now wondering if I need to take 100mg of Amiodarone daily if its not keeping my heart regular. Not doing the job.

Obviously need to check with the doctor but wondered what others thought!

Thank you for your time.

[BobD Volunteer]

Amiodarone is a toxic drug with horrid side effects so ideally only for short term use. Personally I would contact my consultant for advice but it does seem silly to take such a nasty drug when it is not helping.

[Ppiman in reply to BobD]

Bob, have you seen this major study? I've posted the link several times and it is an important study. Did you have horrid side effects when taking it? I was on the verge of being given it but digoxin helped, instead, thankfully.

Many people do seem to be taking the drug safely these days, however. Perhaps your information is based on a different dosage regimen more common in the past?

pubmed.ncbi.nlm.nih.gov/323...

Steve

[BobD Volunteer in reply to Ppiman]

Yes for some people very low dose amiodarone may be fine if it works. In most cases Steve it is given in much higher doses, usually to aid DCCV or to chemically cardiovert. The only time I had it was by drip for such purpose and my arm swelled like I was Popeye!

I do know somebody who was on it for years with little apparent effect other than looking like a grey ghost.

[Ppiman in reply to BobD]

I imagine it to be prescribed only following the strict protocols that each cardiology department will have in place when the clinical need demands such a drug. I have read that it is the most frequently prescribed anti-arrhythmic, still, and also that such drugs carry far higher risks than the much safer rate-control medicines.

Steve

[BobD Volunteer in reply to Ppiman]

European Society of Cardiology protocol is drug of last resort.

[Ppiman in reply to BobD]

Indeed, so for those who need it, it’s a very useful and perhaps lifesaving drug .

That study does suggest it is far safer than is generally thought in modern usage.

Steve

[PengieP in reply to BobD]

I've been on amiodacrone for 12 years. Dropped my dosage from 200mg to 100 mg/day last year. I have had no adverse effects other than sun sensitivity. So it's not a given that it's going to be bad for you. Though there is a good chance that my cardiologist will take me completely off the drug in a year or so if I stay in NSR

[jeanjeannie50]

I agree totally with Bob.

Your resting heart rate sounds pretty good to me. How are you feeling?

Jean

[JackyMac in reply to jeanjeannie50]

jeanjeannie50 I don't feel too bad, thanks. I get out of breath climbing steps and I've slowed right down (which is annoying) but hey! ho! Thanks for the advice and to Bob, I will drop the doctor a note to see if I can get an earlier Cardiologist appointment.

[CDreamer in reply to JackyMac]

My husband has been on Amiodarone - now 100mg daily - for the last 4 years and it is the only thing that has worked for him and without I doubt very much that he would have had any quality of life. His Thyroid has just started to show some signs of failure so he is now also taking low dose Thyroxine. Amiodarone took about 3 months at 200mg/daily to stop the AF entirely and then he dropped gradually to 100mg/daily and since then he has less than 5% AF in a year and his EF has risen from about 30% to 55%. For him it was the magic bullet.

Amiodarone does have a very bad press BUT it is the most effective drug to stop AF.

I’ll post a link to a thread I put up 2 years ago which may interest you as it shows a more balanced responses. YES it is an incredibly toxic drug which you don’t really want to take at if you have alternative treatment options. YES you do not want to be on it long term because it will have affects eventually and the Thyroid (which can be treated), lung damage (which cannot) and skin photosensitivity are the ones you will notice.

IF it works for you and improves your QOL then it has to be an option which only you and your doctor decide. IF it doesn’t help reduce your AF burden and/or you have serious affects then the risks of taking the drug will outweigh the benefits so why would you continue to take it? IF it isn’t stopping your AF then you may have to accept nothing will and live with it but that decision of upping or stopping medication should only be made with your specialist’s advice and guidance.

Hope that helps.

[FancyPants54 in reply to CDreamer]

My goodness, your attitude towards thyroid damage is terrifying! The thyroid is the bodies power pack. Without it his QOL will be zero. Medics swear blind all anybody needs is a small white tablet a day and they will be fine. They even seem to believe this tripe because the current thyroid knowledge in the medical profession is worse than it was in the early 1900’s. They spout that “it’s easy to treat” rubbish at everyone. Believe me, it’s not. Some have success with the only product the NHS will provide, Levothyroxine. But thousands don’t and their lives are ruined unless they fight for help from a position of knowledge, or pay for everything themselves. Endocrinologists are hopeless, they focus on diabetes these days.

Please, the idea that “low dose of thyroxine” will help him rather than make things worse, is a fairytale. This health forum contains an excellent thyroid group, with links to thyroid U.K. join it, get your husband to join it, read and start asking questions. Read Thyroid U.K. web site too.

I have been hypothyroid for 9 years. It’s a living daily nightmare for me. I’ve been in permanent AF for around 2.5-3 years. It’s the hypothyroidism that has destroyed everything I loved to do. The AF I can cope with. I don’t look the same, feel the same or have any of my previous energy or stamina.

I don’t want to be alarmist unnecessarily. But the idea that your husband has been brushed off the thyroid issues with throw away comments about it’s lack of importance is something I can’t keep quiet about.

[CDreamer in reply to FancyPants54]

I’m very sorry for you experience, my comments were purely related to the treatment of AF as a primary condition. I do understand that Hyper & Hypo thyroid conditions are a serious condition which is difficult to treat.

And for my husband it is the lesser of the 2 evils - everyone has a different experience which informs their choices.

Personally I refused Amiodarone when offered but I am 17 years younger than my husband - who is actually doing really well on both treatments.

[Sally_Scott]

don’t take it 😩

[Fullofheart]

I have to agree with Bob and Jeanne on this. Amiodarone shouldn't be taken long term without very good reason. (I have an underactive thyroid thanks to it). Chat with your cardiologist.

[jeanjeannie50 in reply to Fullofheart]

I have an underactive thyroid because of taking Amiodarone too. Will now have to take pills for life to rectify this.

[FancyPants54 in reply to jeanjeannie50]

And if they work for you, you are one of the lucky ones. Hypothyroidism is a terrible condition.

[Auriculaire in reply to FancyPants54]

Have you had no improvement with a combo treatment using T3? I took a combo treatment of NDT and Levo for many years and felt well on it till I started with afib. My endo was even content with my rock bottom TSH as I had no symptoms of overmedication.

[JackyMac in reply to Auriculaire]

Can you explain T3, NDR and Levo please, not heard of these before. Blinded by science,?

[Auriculaire in reply to JackyMac]

T3 is the active thyroid hormone. Our thyroids produce T4 ,T3. T2 T1 and calcitonin. T4 has to be converted to T3 by the body as far more of this is produced . NDT ( sorry typo in above post) is natural dessicated thyroid which is thyroid meds made from pigs' thyroids. Levothyroxine is T4 which is all you get as thyroid treatment on the NHS. It works for some but many struggle on it.

[FancyPants54 in reply to Auriculaire]

I'm a bit better in some ways, brain capacity certainly, on T3/T4 combo. But not as good as I had hoped. I've tried high T3 and low T4 as well as high T4 and lower T3. It often feels like there's a throttle being applied to me. But I'm slowly plodding along at it.

[Auriculaire in reply to FancyPants54]

I found I felt better on a NDT / Levo combo rather than taking synthetic T3 . Maybe because the NDT has all the hormones that our own thyroids produce even though in pig ratios. I added Levo to try and mimic human ratio. I am thinking of trying to introduce T3 again as my afib has settled down a bit and my TSH is rising on T4 alone. The blood test I had this week showed it over the top of the range.

[oscarfox49]

I could not tolerate Amiodarone for more than a few months and on at least one occasion I had to be hospitalised while taking it. But it is important to recognise that it is the drug of choice for many cardiologists and some cultures, and there are people who take it long term. As someone who has suffered from it, I would just say there are far less life changing alternatives and things which don't require constant monitoring for damage to your other organs. Until you have tried those and they have failed, then I think your doctor should advise other drugs which might well help.

[CDreamer]

Pay particular attention to the response from Johnathon Pitts Crick

healthunlocked.com/afassoci...

Hope that helps.

[JackyMac in reply to CDreamer]

Umm, food for thought! Thank you CDreamer

[kkatz]

I am surprised no one else has suggested that you have not been offered a second conversion?

[JackyMac in reply to kkatz]

I had my first one 6 years ago, then AF came and went but last November (2021) it came and stayed so had the cardioversion last may. I'll be contacting the doctor tomorrow and hopeful I'll be able to stop amiodarone.What is the criteria for a pacemaker please? Thank you

[2learn]

Hi, pulse of 75-80 doesn't seem too high. My pulse was about 50-55 and Docs more conerned about this. It was an indication that my heart wasn't pumping effectively, rather than fitness as I had always believed. Ended up with pacemaker to stop heart going below 60. Local medics call amiodrone domestos, kills everything, nuff said.

[DawnTX]

It really can get confusing. I went on Multaq and metropolol following the cardioversion. When it failed in 3 1/2 weeks I was told to stop the Multaq it does no good if you are not NSR. My metropolol has been increased to 3x daily. It is not helping. It gets very confusing so yes talk to your doctor plus you never just stop usually you need to be weaned. There are no promises with cardioversion. I was put on amiodarone in the hospital after my first ablation and I had to stay on it for four months even though it made me extremely ill you need to come off of it right if you come off of it. I think it’s a horrible drug I have never been so sick in my life from anything like this stuff I have no idea if it helped because I felt so horrid all the time don’t put off asking If it’s not helping you want to get off of it