Amiodarone

[kocoach]

I just wanted to clear up such negative responses to amiodarone. What is the mortality rate for amiodarone?

In unadjusted analysis, amiodarone recipients had a slightly higher risk of death compared to non-recipients in the full cohort (87 vs 73 deaths per 1,000 person-years; P<0.001) but not in the propensity matched cohort (89 vs 87 per 1,000 person-years; P=0.36) (Table 2).Jul 26, 2015

How long can you safely stay on amiodarone?

Despite these side effects, many patients have been treated by us with amiodarone for as long as 5 to 8 years--and for up to 10 years in some cases. Amiodarone appears to be one of the most promising drugs for the possible prevention of ventricular fibrillation and sudden death.

Clinical efficacy of amiodarone as an antiarrhythmic agent

M B Rosenbaum, P A Chiale, M S Halpern, G J Nau, J Przybylski, R J Levi, J O Lázzari, M V Elizari

PMID: 793369 DOI: 10.1016/0002-9149(76)90807-9

Abstract

Amiodarone, administered orally in doses of 200 to 600 mg/day, was remarkably effective in the treatment and prevention of a wide variety of atrial and ventricular arrhythmias. Total suppression and control was provided in 98 (92.4 percent) of 106 patients with supraventricular arrhythmias and in 119 (82 percent) of 145 patients with ventricular arrhythmias. The rates of total control of the arrhythmia were: 96.6 percent in 30 patients with recurrent atrial flutter or fibrillation, 96.6 percent in 59 patients with repetitive supraventricular tachycardia, 100 percent in 27 patients with Wolff-Parkinson-White syndrome and 77.2 percent in 44 patients with recurrent ventricular tachycardia unsuccessfully treated with other drugs. Excellent results were obtained in 6 to 8 patients with repetitive ventricular tachycardia and ventricular fibrillation related to postinfarction ventricular aneurysm and in 12 of 14 patients with ventricular extrasystoles and ventricular tachycardia related to Chagasic myocarditis. Amiodarone proved safe in patients with severe congestive heart failure and severe myocardial damage. Its clinical efficacy was related to its electrophysiologic properties and to two unique properties: its wide safety margin and its cumulative effect. The latter liberates patients from a rigid hourly schedule and provides for continuous antiarrhythmic control, days and even weeks after treatment is discontinued.

Amiodarone: a unique antiarrhythmic agent

G E Sloskey

PMID: 6349912

Abstract

The chemistry, pharmacology, pharmacokinetics, clinical use and efficacy, adverse effects, and dosage of amiodarone, an investigational antiarrhythmic agent, are reviewed. Amiodarone hydrochloride (L3428, Cordarone; Labaz Laboratories) is a benzofuran derivative and contains iodine. Amiodarone is a noncompetitive antagonist of alpha- and beta-adrenergic receptors. It is a type III antiarrhythmic agent and causes prolongation of the action potential of atrial and ventricular tissue. The drug is incompletely and variably absorbed following oral administration; bioavailability ranges from 22 to 86%. Peak serum concentrations occur 2-10 hours after an oral dose. Amiodarone has a large volume of distribution and is widely distributed in body tissues. It is metabolized by the liver; half-life following a single dose is 5-20 hours, but terminal half-lives of 14-58 days have been found following discontinuation of long-term therapy. Amiodarone has been effective in treating supraventricular tachycardias in patients with Wolff-Parkinson-White syndrome whose arrhythmias are refractory to other drugs. Preliminary data suggest a potential use for amiodarone in treating atrial fibrillation/flutter and bradycardia-tachycardia syndrome. The drug has also been tested in patients with ventricular arrhythmias with promising results. Amiodarone has many side effects, some of them serious. The cardiovascular, pulmonary, neurologic, and hepatic systems may be affected; the drug also has deleterious effects on the eyes, thyroid gland, and skin. The usual oral adult dose of amiodarone hydrochloride is 600 mg daily for seven days followed by maintenance doses of 200-400 mg daily during initial therapy. Intravenous initial doses of amiodarone hydrochloride 5 or 10 mg/kg via a central line have been used; these are often followed by infusions of 10 mg/kg/day for three to five days. Amiodarone is an effective antiarrhythmic agent whose use is limited by numerous and sometimes serious side effects. Until more clinical data are available, its use should be restricted to treatment of serious arrhythmias refractory to other agents.

Hope this ease's some of the members on this web site concern's about amiodarone. It is not a DEATH drug. I know as I've been on it for 5 years now.

[BobD Volunteer]

Here in UK and Europe it is a drug of last resort due to the toxicity but provided regular thyroid and lung checks are made along with avoidance of sunshine and eye examinations it can be highly useful .

[kocoach in reply to BobD]

You know I go out in the sunlight when it's 90-100 degrees out with no hat, missed two years of check ups with EP and Cardiologist during covid and when I did have tests done two years later they were happy everything was OK. It just freaks me out at times when I read on the Health Unlocked Forum when people talk about how bad it is and when my EP won't take me off of it then I really get anxious and apprehensive; such as a member yesterday replied to a question by another member saying amiodarone leads to mortality. Thank You for your reply.

[CDreamer in reply to kocoach]

Amiodarone is a very toxic drug but as Bob says, well monitored and taking the minimal effective dose can bring long term benefits.

Amiodarone makes people photosensitive so going out in the sun without really good protection - not a good idea if you want to avoid skin cancer! That is one MUST on Amiodarone.

My husband has been on Amiodarone for 5 years now, it’s worked well for him although his thyroid has been affected and he now needs to take Levothyroxine.

AND it has kept him in NSR for those 5 years - it is the most affective anti Arrythmia drug but it comes with consequences so you do need to read the literature and decide whether or not it is a good option for you. My husband is living well at 89, without this drug he would not be alive. It’s Benefit:Risk assessment.

As to leads to mortality, we all die, it’s more about how we live that matters for me so if Amiodarone hastens death but improves quality of life?

[Truffles2 in reply to CDreamer]

I agree with you about quality. I had no quality whilst taking amiodarone so I feel it works both ways. Everyone is different and what’s good for one might not be good for someone else. It is of course a drug of value, just not for everyone.

[CDreamer in reply to Truffles2]

Absolutely, I chose not to take and went down the Pace & Ablate route instead.

[kocoach in reply to CDreamer]

Thank You, very well put.

[LaceyLady in reply to BobD]

🤦🏼‍♀️ Turn into Dracula and cone out at night 😵‍💫

[jeanjeannie50]

We had a get-together for members of this forum a few years ago and out of 21 people that attended, 3 of us had become hypothyroid because of Amiodarone and now have to take drugs for life to rectify this. I'm sorry but I have no interest in what experts say about it. I detest that drug for how it made me feel so dreadful - I thought it was AF making me tired.

I must say though that I've never heard of it causing any deaths and knew someone who took it for about 8 yeas with no problems.

Jean

[kocoach in reply to jeanjeannie50]

Thank You jean, I just posted this because of a response a forum member replied to another question of a member and they said amiodarone was a drug of mortality, which I hate to hear as I have been on it for five years and my EP refuses to take me off of it after many requests to do so. Thanks again for reply.

[CDreamer in reply to kocoach]

Your body, your choice. Your EP can offer treatment but you can refuse to take it but I would look at the dosage and discuss your concerns with your EP so that you can give informed consent rather than knee jerk reaction.

PS - my husband reduced to a maintenance dose of 100mg/daily very successfully.

[kocoach in reply to CDreamer]

I've asked my EP what would happen if I stopped taking it and he replied that the consequences would not be good. I have also decided to seek another opinion from a different EP, appointment is very soon coming I hope. Thank You

[john-boy-92 in reply to jeanjeannie50]

It's necessary to distinguish between amiodarone or other drugs as the primary cause of death / disability, as distinct from the secondary cause. I was hypoxic secondary to amiodarone and dronedarone, sufficient for the ICU team to seriously talk to me about being sedated, put on mechanical respiration, and phoning my wife. That generated a paper by the team who treated me, on the effect of dronedarone and amiodarone. My negative response was 6 in 100,000 and I was/am clinically exceptionally vulnerable because of the resulting damage to my lungs. We can respond differently depending on how our bodies metabolise a drug, or deal with a medical condition. Some people are physically disabled by a stroke or die. The permanent effect of my stroke was limited to visual disability for which I have a Blue Badge. It does not mean my experiences for good or less so will be replicated by the community at large. People need to be aware of symptoms of medication and medical conditions so that they can take early action. My experience of amiodarone and dronedaone was worsened by twice being wrongly diagnosed byconsultants as having community aquired pnuemonia and, an EP who prescribed the drug refusing to see me. I'm still here due to my GP and Professor Anne Millar with regard to pulmonary toxicity secondary to dronedarone and amiodaone and, Dr Olivera Martinovic for the stroke. For all of the above reasons, I'm a lived-experience participant in a number of University studies.

[kocoach in reply to john-boy-92]

I'm sincerely sorry you went through all that you have and it is a blessing that others stepped in to evaluate and correct what was going on with you and the medications. That's why I get so anxious when upon requesting to be taken off of amiodarone and my EP refuses to do so, many times. It's sort of playing Russian roulette with your health. Wishing you continued healing and GOD Bless.

[Buffafly]

I have not heard of it being a ‘drug of mortality’ but my EP threatened me with having to take it if I didn’t have an ablation and described it as a ‘dreadful drug’. I believe doses have been adjusted recently so that damaging side effects are not so common and provided you have regular testing and tolerate it well it is safe to continue. I think medics have probably learned more about safe administration now.

[kocoach in reply to Buffafly]

As stated in the commentaries they say 5 years and in some cases 6 and 10 years is acceptable. My concern is it's like being under the "sword of Damocles". What to do when the EP refuses to take you off of it when requesting to do so numerous times?

[baba in reply to kocoach]

EP prescribes it, you decide whether to take it or not.

[kocoach in reply to baba]

I went to him for help, if I don't do what he tells me then the consequences are all on me. Not ready for that yet. Thank You

[Jajarunner]

Nice to read something positive as it's the only drug that works for me. My arrhythmia nurses always tell me that "it's a great drug with side effects for some". My cardiologist loves it as it has restored my quality of life. My EP hates it and wants to do a fourth ablation (would have been my fourth in about 24 months!). Thank you for sharing xx

[dmac4646 in reply to Jajarunner]

The problem appears to be that it is not the length of time that you are on it but your luck on whether or not it affects you knowingly or unknowingly - its is a drug of last resort - no idea how it compares with pace and ablate - the other last resort ?

[kocoach in reply to Jajarunner]

How long have you been on it and what dosage? I'm taking 200mg once daily for 5 years now.

[Jajarunner in reply to kocoach]

Just six months though I did a few months after my first ablation. Only side effect so far is the haloes round bright lights at night. J just can't face another ablation, it's four months before I can walk a brisk four miles and 5-8 months before I can run. My QoL was terrible. Good luck to you xxx

[kocoach in reply to Jajarunner]

Thank You, same to you as well. I was offered an ablation as well or pacemaker but i'm too chicken to be put out, when I get put to sleep it will be permanently. Best of luck to you and hope you continue in better health.

[Gra55]

It's interesting to read peoples comments on drugs, if they have a bad reaction then it's a bad drug. But it's only a bad drug for them. When I went into AF, they couldn't get me out of it, a cardioversion only lasted 5 days. Put me on amiodarone and two weeks later I was out of AF. I was kept on it for a year without any side effects at all. The drug that messed me up was Edoxoban. For two years I was short of breath, struggled walking upstairs, couldn't walk the dog. Changed to Apixaban and all shortness of breath gone. We are all different and all drugs are ok, some will work for you others won't. It's just a case of finding what works for you. Sadly some doctors and cardiologists don't think the drugs they prescribe can cause side effects, but that's a different story.

[kocoach in reply to Gra55]

Glad to hear it's doing what it's supposed to do for you. My Ep tells me if I were to stop taking it the consequences would not be good, he tells me it's my last choice there's nothing else, although I can't believe that.

[Weren in reply to kocoach]

Have you researched the Wolf Minimaze?

[kocoach in reply to Weren]

Yes I have, I called and spoke with a nurse ta their Hospital and she wanted me to fill a form and send it back, but they're in Texas and I'm in California and have a slew of medical conditions so travel not feasible. I'm77 years old now, how much longer have I got anyway.

[Weren in reply to kocoach]

I'm sorry and I know the feeling. I filled out the forms and sent back via email since I am in MI. The process takes awhile, but when you sign the consent form for your doctor's to release your medical records Dr. Wolf will review them and if you are a candidate they will set up a virtual visit to talk to Dr. Wolf.

[Rainfern in reply to kocoach]

I would be suspicious of an EP telling me “there’s nothing else” in relation to amiodorone. Those sound like the words of one very weary or dismissive EP. No wonder you’re getting a battery of research info together to discuss with them!

[kocoach in reply to Rainfern]

This is the Veterans Administration free health care for us vets. I can't even find out if I had an ablation in 1995 at one of their Hospitals in west Los Angeles Ca. as there was a huge scandal about it in the newspaper and tv, the EP was doing things like that without informing us beforehand. By all accounts it appears I had one but can't confirm it, was in the Hospital for 3 weeks. I'm going to seek another EP's opinion privately.

[Rainfern in reply to kocoach]

glad to hear that 😊

[Weren in reply to Rainfern]

That is pretty much what my EP told me.

[Ppiman]

I have posted the link below very many times on this forum to try to allay people's fears. I was almost put on it as I can't take flecainide or sotalol as they can dangerously lengthen the QT complex, whereas amiodarone is far safer in that and many other ways. It's toxicity owing to its iodine content is why it has a bad reputation, but with monitoring and low dose it seems to be safe. Clearly, in the past, it has not always been used properly or safely.

It seems to be a drug, much like digoxin, which is very useful but has the potential to be highly toxic in a few people. The phrase "drug of last resort" is not used in the UK, where it is only recommended "when other drugs are ineffective or contra-indicated". I think the former phrase is unhelpful and too emotive to use, much like the phrase "heart failure". We have enough to worry about without anything like that adding to our woes!

ncbi.nlm.nih.gov/pmc/articl...

Steve

[kocoach in reply to Ppiman]

Thank You So Much for that link. I am taking a portion of it to me EP, I have an appointment in two weeks and ask him about the new treatments and newer drugs that are now being found out to help people with afib as it states. It's funny though I was on diogoxin and was taken off of it because of the toxicity off it and put on amiodarone. Thanks again for very detailed commentary. Have a Great Day

[Silvasava]

I was on Amiodarone prior to a cardioversion. Thyroid issues weren't a problem as I don't have one but it affected my liver and I was taken off it immediately. I think it's either OK or horrendous, no middle ground

[CDreamer in reply to Silvasava]

I think you are correct.

[kocoach in reply to Silvasava]

Hope you're OK now. I feel like it's just waiting for something to happen.

[Silvasava in reply to kocoach]

All OK now thank you - this was a couple of years ago.

[Sally_Scott]

I was on it for a very short time. I was dreadful on it. I told my cardiologist then, to put me on something else. He put me on Flecanide and I’ve never looked back. Don’t care what the research shows, I would never take it again even if you paid me!

[kocoach in reply to Sally_Scott]

How long did it take you after stopping it to start feeling more normal? I'm trying to get taken off of it but my EP keeps saying NO.

[Sally_Scott in reply to kocoach]

about 6 months. It’s up to u to be a more assertive with him. Tell him there are alternatives and you would like to try one and if no good you can always revert back to it. He can’t argue that reasoning with you.

[kocoach in reply to Sally_Scott]

I've tried but he say's for me it's the last resort and consequence's would not be good if taken off of it. I plan to get a second opinion though from a different EP, we'll see how that goes. Thank You for reply

[MarkS]

I think amiodarone can be beneficial for short term use for cardioversion. However, longer term, it does appear to increase mortality. In this analysis "Mortality risk of long-term amiodarone therapy for atrial fibrillation patients without structural heart disease":

pubmed.ncbi.nlm.nih.gov/264...

Amiodarone was found to increase all cause mortality by 2.4 times more than the non-amiodarone group. The dosage does seem to have quite an effect, lower doses of amiodarone do seem less toxic (<300mg per day).

[kocoach in reply to MarkS]

Thank You Mark for that link, I just made a copy to take to my EP next appointment in two weeks. Been on amiodarone for 5 years and he will not take me off of it no matter how hard I try.

[healingharpist]

Thank you, kocoach. I appreciate your words. My mother has been on daily 100 mg amiodarone for 24 (yes, that's TWENTY-FOUR) years... without any side effects, and she has never had another AF episode in that time! She has regular check-ups and never had any issues. It is the high dosing that causes most of the problems. All we unique individuals can do is try these drugs out and hope that low dose works for us.

[kocoach in reply to healingharpist]

Thank You for the reply. I'm glad to hear your Mother is doing good on it, 24 years, WOW! I've been on it for five years now and it's very concerning to hear when some members on this forum say how bad amiodarone is. I'm on 200mg daily. I feel tired all the time , my back and leg joints are very sore all the time but I attributed it to the hard and life I lived, (athlete) and what I put my body through until I read what someone say's that it's due to amiodarone , then it really makes anxious. So glad to read you mother has been on it so long and doing great, maybe I can relax now. Have a Great Day

[healingharpist in reply to kocoach]

Yes, I think you can be at peace about 200 mg/day because all of the studies I have read call 100 to 200 mg per day "low dose amiodarone". And low-dose amio is definitely in the category of far fewer or even no side effects, as my mother has experienced. Hopes for continued good health for you... If flec and metoprolol ever fail me, I would not hesitate to go on amio. Diane

[kocoach in reply to healingharpist]

Thank You for encouraging words. May you and your mother have a Blessed Day!

[Tenshun]

I had a discussion with my cardiologist yesterday as l need to try and make a positive decision about my worsening Afib. Previously l was offered Amiodarone or Pace and Ablate but due to the 'bad press' regarding Amiodarone l decided against taking it. I was also reluctant to go down the P&A path as it really is the last resort. So instead he has offered a trial of Droneadrone which according to him is a safer drug than Amiodarone but just not as effective although he already has a number of patients already on it and said the results have been very positive. Before starting the trial l would have an ECG and then would need regular blood tests to check my liver function, this he would organise. He said that Droneadrone is not any more dangerous than the drug l am currently taking which is Sotalol.

An issue l do have with Sotalol is a low resting heart rate which he said could just be the same with any other antiarrhythmic drug.

This is something l might be willing to try but not at this moment, as l am waiting on a date for shoulder/arm surgery to insert a metal plate.

I had mentioned this to him and he suggested not to overstate my Afib issues or low heart rate as they might decide not to operate. This has greatly concerned me as l really need this operation. Has anyone else been refused a surgical procedure due to issues with Afib or their heart rate.

[JOY2THEWORLD49 in reply to Tenshun]

Hi

I am scheduled to my right shoulder - cuff tears in October.

I had a removal of ugly distructive Johnson & Johnson mesh last Feb 2022. The anaesthetist said if my H/R was over 100 H/R it would not be done.

On Diltiazem 120mg and 18 months later it is now down in 60s Day and 47 avge according to all 3 x24-hr heart monitors used in changes in meds in 2021.

How low not sure but the anaesthetist will test you and please talk about your AF and meds as they need to know and for your safety. Who is 'him' as this is a totally bad instruction.

At H/R in February 2022 of 88-96 in our Northshore Public hospital I had 2 anaesthetists. 2 doctors because the surgeon was using an implement and the other guiding through computer images. Top surgeon in the field of removing Johnson & J sling and ugly mesh. I was discharged at 24 hours!

I had a plate and screws put in 2007 put in my left shoulder. I did not have AF then.Have you bursitis?

That surgeon manipulated the shoulder during the operation, cut the joint and repaired the full thickness tear. Bigger operation. As the bursitis (frozen shoulder) has resolved now (and our ACC would not pay the operation until it had) mine will be 'holes' at the top and not a slash wound right across the top. I fell in August 2022 when I manipulated my shoulder with the continual pain vanishing. Left then with pain on extension only.

There are questions to answer and you should answer these honestly.

Mine will be done privately and I have insisted on staying overnight.

As my uro-gynaecologist insisted that I be done in a publlc hospital as I would have more support. ACC paid the hospital mentioned above.

All the best. I had to sleep in a lazy boy chair 3 months. Left shoulder was akward as I get out on the left.

Get set up with a PULLEY. Later you exercise on the overhead pulley.

cheers JOY. 74. (NZ)

[Tenshun in reply to JOY2THEWORLD49]

Hi there, l don't have bursitis l have a complex fracture of my upper right arm which l done 6 months ago. It was hoped that it would heal naturally but this has not happened. I also have a torn bicep tendon on my left arm which will need fixed after my right arm surgery. As you rightfully stated l will need to inform the orthopedic consultant and his team as to my existing medical issues then the decision to go ahead will be up to them.

I already have all the equipment needed for any recovery exercises as l had an operation to repair my AC joint a couple of years ago.

[JOY2THEWORLD49 in reply to Tenshun]

Hi

All the best Tenshun.

I'm trying to work around my section to keep down greenery before my arm goes into a sling.

I have the old huge sponge rubber from last time and physiotherapist changed the straps to right.

No driving for 6 weeks! And I will get Dr to refer me to hospital for swimming. My engagement ring topaz lost it stone and it coincides with the hospital's pulley. I never found it but it would be in half. $100 plus to replace it as close as possible.

Do be careful with your jewellery.

Do let us follow you in your speedy recovery. You in September, me in October. Are you staying overnight at a public hospital?

AF and painkiller. Ifiprofen was best but it's a no. Last operation it was OXY-NORM (3 days)and paracetamol 2 x 500g x 4.

I needed a MORPHINE PUMP last time over first night. (was not operated on until 5pm). No painkillers.

I found for last year I could have 90mls water up until 2 hours prior. I state please keep me warm. H/R night 47 avge.

With the thyroidectomy in Feb 2020 I had 2 anaesthetists as well.

Anyway I sailed through both of them. The bed was moving and warm for my 2020 operation.

All the best. 3 x 24 hrs stop to my PRADAXA. And afterwards 2 x 24 hr free days.

Cheri JOY

[Tenshun in reply to JOY2THEWORLD49]

Thanks Joy for your reply and worthwhile advice. I don't have a date set for my surgery. l had a CT Scan done two weeks ago which my consultant still needs to review, Unfortunately he is on holiday just now. My operation when it happens will be done at a NHS Hospital, again l don't have any details at this moment but will find out more when l speak to my consultant.

[JOY2THEWORLD49 in reply to Tenshun]

Hi

CT SCAN? or MRI or SCAN of Shoulder???

Mine accident happened 3 years ago in September 2020. 1st Orthopaedic said CORTISONE INJECTION. I couldn't leave hand on wheel or work the indicators which NZ has them on right side.

No thanks to Cortisone injection. They can and do weaken muscle and it can muck up any future operation. Also interferes with Thyroxin. They stay i blood stream forever. Maximum 3 I think.

In August 2021 tried to put my foot up and into lower basin and lost balance and head crashed into Hardie Glaze bathroom wall, elbow went into a Nitro Kibble plastic tall container with a double edge, coccyx hit the chipboard and vinyl floor! OUCH!

The movement of my arm was surprisingly free! I had manipulated my shoulder.

Freeer that day and the upper arm went black, the frozen bag of beans worked on coccyx and lucky that the back of my head banged where there was no adjacent timber and I didn't break it.

Dressing or reaching was painful but no longer waking up at night 5 times with the pain.

We have ACC a government run entity. Their new ruling is you wait to see whether your bursitis or another word your frozen shoulder is resolved.

6 months with a fracture!!!!!??? How can that be?

It sounds like will be manipulated under general anaesthetic. My joint was cut but that surgeon said there was a lot of inflammation to heal. That operation was done on the 8th month. I didn't see the surgeon until 6th month. Done in S America on honeymoon. On the Tucan Bus trip.

Oh dear.

We shouldn't have falls.

The 2nd orthopaedic wasn't allow to se the new accident number so hence no further tests.

The 3rd orthopaedic surgeon is up here in Northland and he stood his ground after seeing the June 2022 MRI. He can see that the bursitis has resolved. Yippee. ACC had no excuse left. A full thickness tear and 2 others with an impingement.

Happy days. I was a Discus thrower. Played tennis, badminton and more reason I want to get back to my bowling green.

Cheri JOY

[KootenayTrails in reply to Tenshun]

Yes, an internist “failed” me on pre-surgical screening for a minor nasal/sinus surgery. Reason: Unstable, often daily AFib episodes with bradycardia, on amiodarone awaiting ablation.

[Tenshun in reply to KootenayTrails]

Hopefully this will not happen. I broke my arm 6 months and l am struggling badly with constant pain.

[KootenayTrails in reply to Tenshun]

I’m sure they’ll take the constant pain into consideration, in your case. Hope it’s soon for you!

[Tenshun in reply to KootenayTrails]

Thanks.

[Herbalgal]

My integrative medicine doctor has told me she lost 3 patients to liver failure due to taking amiodarone. She calls it an evil drug.

[kocoach in reply to Herbalgal]

WoW, healingharpists mother has been on it for 24 years and doing great, I've been on it for 5 years and no problems yet. I think monitoring is the key. Thank You.

[JOY2THEWORLD49]

Hi

Well, I couldn't have it as it has IODINE in it (so for Thyroid AFers/problems).

No also because of abnormal structural reasons - no anti-arrythmic drugs.

I would have thought being in control via meds of rapid, persistent H/R and AF and lowered BP to normal would give my heart less stress and therefore less rhythmic problem.

The sweating is far less so I'm not agitated. 60s H/R Day suits me heaps better than 187 on just Metoprolol or 156 on just Bisoprolol. Strangely H/R avge Night always returns to 47. But pauses with Metoprolol.

Reading about that drug along with flecainide is scary.

cheri JOY. 74. (NZ)

[Nannysue1]

I was on it for just over 6 yrs and monitired carefully with no side effects. Kept me out if AF for most of that time but then unfortunately stopped working for me but no side effects other than I was super sensitive to the sun.

[kocoach in reply to Nannysue1]

I was on an experimental drug at the time called Tikosyn, or Dofetelide for close to 24 years and it worked great, then all of a sudden it stopped working and I was put on amiodarone for 5 years now and it is a so,so drug but EP won't take me off of it. Are you taking anything now? Thank You for reply .

[Nannysue1 in reply to kocoach]

Ive had the pace and ablate now and thankfully , apart from apixaban, i dont take anything else.

[kocoach in reply to Nannysue1]

I wish I was brave enough to get either ablation or pace and ablate, but I'm not.

[Nannysue1 in reply to kocoach]

I didnt have any ablations, i wasnt a good candidate as i akso have hypertrophic cardiomyopathy . I was so scared of the pace and ablate and the finality of it. It took a long time and a lot of consideration to get to this but for me its definitely been the best one.

[KootenayTrails]

Wanting reassurance while taking Amiodarone, is completely understandable. I did not want to take it at all, but my quality of life from daily BAD AF episodes was intolerable. For me, amiodarone did not stop the almost daily AF, but unlike other drugs they tried, it reduced the burden of each episode, so gave me my life back. I believed my EP team that lower dose is safe as long as ecg, liver, thyroid and lungs are monitored often, which they did. I have had no noticeable side effects at all. I own a boat so am in the sun often, so apply sunscreen often. No issues. My ablation so far seems successful, so stopped amiodarone last week. If AF returns in same way again, would I take it to prepare for another ablation? Yes, absolutely. We really are all very different, and I am incredibly grateful for our Canadian EP Teams, who understand that.

[kocoach in reply to KootenayTrails]

Glad to hear you're doing good after ablation. Sunlight has never bothered me also but tiredness and zombie feeling are very much prevalent. I just accepted it was to my athletic life and training as to why I was feeling this way but reading some of the comments on amiodarone am beginning to question it. Enjoy your boat and have a great day.

[KootenayTrails in reply to kocoach]

Yes I forgot to mention that I also had a real fatigue most days. Have been able to do moderate exercise but needed a nap most days. 7 days without it and feel the fatigue is lifting, and sleeping better. Maybe the new EP will have other suggestions re lower dose for you? Thanks and you too enjoy your day!

[riffjack846]

I took 200mg a day since Nov of 2019 and had an ablation in 2022 and now on 100mg. Best thing I ever did. Been in NSR and quality of life x1000 what it was having afib episodes.

[Rainfern]

Hi kocoach - I’ve been reading this thread with interest as I recently came off amiodorone and actually feel worse! I have persistent AF and was put on it to see if it helped a second CV, so I only took it for a couple of months. I was in NSR for a few days after the CV and the amiodorone didn’t stop the AF but did get my heart rate down without lowering the blood pressure. My blood pressure errs on the low side so that counts out a number of beta blockers.

I’m waiting for digoxin (foxglove!) to arrive, recently prescribed by my EP cardiologist. Like amiodorone this comes with its own warning list. Every single medication on the planet comes with a few dire warnings. Every single medical procedure has its risks. So best to listen to what your body tells you, we’re all different so monitor things for yourself as well as regular medical tests. And I’d explore that fear of catheter ablation or surgical procedure a little before you dismiss it as a way forward. I also wondered if you have access to a second opinion? Have a nice weekend and relax with whatever decisions you make for now or in the longer term!

[LaceyLady]

Well I refused it and got give Dronedarone 🤷🏼‍♀️ They’re all toxic and serious side effects. It’s the lesser of the evils.