I am a 57 year old lady and I was diagnosed with Persistent AF in October of last year (A&E admittance at 190 BPM), was prescribed Edoxaban & Bisoprolol. Note - I have no underlying health issues of any kind and my AF is described as "cryptogenic".
Cardioversion Nov 22, went into NSM for only 10 seconds and then back into AF. Bisopolol reduced my BP too low so after months changed to Diltiazem in April this year. Also February 23 added Flecainide 100ml a day.
Second CV last week, 2 attempts and my heart went into normal rhythm, stayed there for 5 hours and then the AF was back.
My EP Dr Lee at Northern General said if this second CV did not work, then next option would be to put me on Amiodarone (replacing Flecainide) and then try a 3rd CV.
However, he described in detail the long list of side effects that this drug can cause and that he would not recommend being on this tablet long term due to these. Baseline blood tests + 6 month blood tests etc etc. Since done a lot of research on this and frankly, though I know all drugs have side effects, and not everybody experiences them, this one looks like it has the potential for causing nasty ones.
I am not sure that I want a successful NSM but at the potential cost of causing lung fibrosis, liver issues and other things...!!🤫
My specific question therefore to the forum is, does anybody out there have direct personal experience of being on Amiodarone? Any feedback would be helpful.
Thank you in anticipation. 👍
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I don’t have direct experience, though I know that some people take it happily long-term. Also that the lower dose that is usually prescribed is not thought to be quite as bad.
I have now been told that the amount of fibrosis found at my ablation means that more are not recommended. Also, that the only way that a cardioversion was likely to succeed would be Amiodarone preceding it, then for years afterwards. I decided that wasn’t a great idea, and it wasn’t really advised for me either.
So now I’m just on rate control, with 5mg of Bisoprolol each day. Flecainide didn’t work for me, and dronedarone did not work for long - and also raised my liver enzymes.
It’s a diffficult choice, I would love to have got back to NSR. Last year, when I still got about a month of NSR between episodes, I knew how much better it felt. But I’m getting used to it now, and in some ways it has taken away the worry about further procedures. If the rate control doesn’t work out, then there is always the ‘Pace & Ablate’ route - which has been mentioned, but only if the rate isn’t controlled.
It’s maybe worth asking how long you would need to be on Amiodarone for, as it could affect your decision?
You know that many, if not most of our afib's are "cryptogenic" (obscure) in origin. So much they still have to learn about this condition
I get what your ep is trying to do, but after Flecainide has failed to control your rhythm and after two failed CV's, are we literally beating a dead horse by going for a third CV after prepping with no one argue a very powerful drug (Amiodarone)? A drug with a long list of potential side effects that needs careful monitoring.
And say, the third CV holds. Will it keep holding without continuing the Amiodarone? And if not, then what? Continue with the Amiodarone and for how long?
These are all questions I would put to your ep before making an commitment. And also ask why ablation is not being considered at this point.
I described the cryptogenic merely to emphasise no other known health conditions to cause it is all.
All of your proposed questions are on my list and part of my decision making process, what was missing in that process is any real word personal feedback. Having now read various prior posts on the forum (which I found only after putting. my post on), it's like anything else, some people it causes impacts, some it doesn't. Nobody can crystal ball gaze and say whether or not they will or won't experience some of the doubtless potentially nasty side effects, but feedback can assist with making a more informed decision.
Already asked about ablation (and as Bob below says), and other options, they won't consider until a CV has proven I can hold NSR (5 hours not being considered to be).
Makes sense and glad you found your answers with the search bar. Hopefully, the CV will hold, if not consider a surgical ablation like MiniMaze or Hybrid/Convergent. They can often work where catheter ablation won't.
At my EP appointment, we went through all options, CV, ablation, mini-maze and even pacemakers, he said until a CV had proven NSM could be maintained for a time, then ablation success would be very limited 30%, pacemakers was down the road but reluctant due to my age....
Certainly I would be happier to 'flog a dead horse' with another simple CV (whether or not with Amiodarone) before jumping to a more invasive ablation with a limited potential for success right now.
Seen enough posts on this forum to know that consultants/EPs/cardiologists one will say black and another is white, such seem to be the complexities of AF....🤔
Ep's may not be the most knowledgeable about surgical ablations, as they do not do them. I would double check that 30% figure with a surgeon who does mini maze or hybrid and I think you will get better numbers.
Yes, they are more invasive than catheter ablation, but they also work better. I was simply asking, "what next" even if the CV held after a course of Amiodarone. I imagine it would then take an indefinite course of Amiodarone after to hold you in rhythm.
I really don't think there is a right or wrong road, just asking questions. Not easy choices with afib.
My EP undertakes the full spectrum of interventional electrophysiology procedures (catheter ablation and device implants/extraction) himself so I assume he knows what he is saying.
It may not have been clear on my reply but the 30% related to catheter ablation, he didn't even discuss mini-maze or hybrid chances.
How long I would have to remain on Amiodarone if I agreed to it, is on my list of questions... a long list I might add.
I'm surprised he has said this tbh. If it were me I'd seek a second opiniin from another EP. I'm down for a mini maze because they know the other options wouldn't work. So his logic doesn't really hold water so to speak.. I'm unusual though as they would normally try s catheter ablation first before escalating to a mini maze but my situation is a bit different.
Several things here. To answer Jim's question ,Ablation is seldom offered if NSR can't be obtained by either chemical or electrical cardioversion.
An eminent consultant once told me that amiodarone does NOT have side effects. It has effects!.
Lastly any and all treatment for AF is only for quality of life . Provided that rate is well controlled and anticoagulation in place where appropriate the only "best" tretament is what works for you.
Thus looking on bleak side, not sure what quality of life would be if I replaced my AF instead with potential lung fibrosis, thyroid issues, blah blah... and who knows, you only know how you will react once you are on it and as it apparently takes 6 months to get out of your system, its not like stopping it, will immediately stop on nasty side effects....😬
Looks like you have done your research on Amiodarone and your are quite correct it take 6 months or longer to get out of your system. Amiodarone is iodide rich so may induce hypothyroidism. Keeping in mind interaction with other medication you may be on. My husband liver was damaged after only being on this drug a short time. they say laboratory studies to assess liver and thyroid function at least every six months. Maybe to late then. The Us Food And Drug (FDA)have labeled amiodarone only for life-threatening ventricular arrhythmia. Amiodarone is highly lipid soluble and is stored in high concentrations in fat and muscle as well as in the liver, lungs, and skin,. Can also effect your eyes. Low dose for some people may work. Wishing you well.
Bob: "To answer Jim's question ,Ablation is seldom offered if NSR can't be obtained by either chemical or electrical cardioversion. "
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It was somewhat rhetorical in the sense, what next I think questions like this are good to make sure our ep's are listening (ours stare into the screen a lot), regardless of what side of the pond we're on.
But where I was going is what's the plan -- a lifetime of Amiodarone? Because if that's it, surgical ablation or Hybrid/Convergent might be a good next step and as you know, it's starting to be offered in the UK, even under NHS, more widely and surgical ablation can work in cases like this even when CV fails.
My husband has direct experience although his circumstances are very different and he is much older, 89.
Started taking Amiodarone after CV didn’t work and he had been in persistent AF for some time, so ablation was not advised. He was in heart failure and QOL pretty low. That was 5 years ago, Amiodarone was started prior to CV, 200mg/daily. It took about 12 weeks but then he started having bouts of NSR which eventually persisted. After 2 years his dose was reduced down to 100mg/daily, which he is still on.
Symptoms:- photosensitivity and skin BCC’s - which have required surgery but that was the case anyway after a lifetime in the tropics not using protection. 3 years in evidence of reduced thyroid function so now taking thyroid drugs.
On balance, given his circumstances, Amiodarone has given him a quality of life that otherwise he would not have had. I think Amiodarone has to be a last option rather than a first.
You might want to ask about Lifestyle actions which can have an enormous affect, pacemaker, if you are not symptomatic staying in peristaltic, mini-maze hybrid?
Decisions such as this needs assessment - on balance would you better with or without?
You are much younger and may well have alternative options which may be worth exploring.
Many thanks CDreamer, even though different age and circumstances, anecdotal experiences are all helpful. Glad that it has helped your hubby ... as you say, difficult decision ... crystal ball gazing... weighing up pros and cons applicable to me is all I can do.
As someone with hypothyroidism that doesn't respond to conventional treatment as dished out with little understanding by the NHS, I would never take a drug that had the potential to harm my own thyroid output. It's a much worse disease in my view, than the Afib. I can cope with Afib. I can't cope with the devastation hypothyroidism bought me.
I have been reading your story and know the dilemma you are in well. After years of PAF and countless trying different medication which all helped for a while I was offered amiodarone 'as a last resort' as my doctor said. I had studied the side effects of this drug and although I had not wanted to go for the ablation way of doing things because it seemed to me that they did not always work and you were faced with uncertainty with them, I weighed up the odds and went for Pace and Ablate. I am so glad I did because for the first time in 10 years I am now coming up to 1 year AF free. I think you have to decide what is best for you but all I can say is it worked for me and good luck with your decision.
Yes , I've been on Amiodarone several times during my 30 year AF history. The longest period of time was fo about 18 months at age 49. I've had it for shorter periods of time prior to an ablation/dccv.......weeks at a time.
. My biggest problem was having to cover up in the sun. I used to love the beach and sunbathing. I also had hypothyroidism diagnosed. Whether or not this was due to Amiodarone is probably debatable as I know many females of a similar age who were diagnosed and not on the drug.This is not a big deal for me.
For short periods of time this is an extremely useful drug and I'm sure you will be properly monitored. Reading all the literature about the the drug is certainly a frightener but this applies to many drugs. Just be aware!
Thank Jalia, my bloods all clear of thyroid issues on last 3 lots taken, so, as I said previously its weighing up the probabilities of whether it might cause me to have issues.... yes the sun issue is a prob if you like the sun, 😀.. again, all useful feedback, thank you.
Hi. I was in persistent AF and was put on Amiodarone for 3 months then given CV which held for 2 years. I had no problems on the Amiodarone and was taken off it after the successful CV. After 2 years of being in NSR I'm now in paroxysmal AF which is much better than it was. It was good for me but it must be your decision in the end
I had amiodarone for 3 months, a 3rd failed CV and then an ablation which still is successful after 4 years. Came off amioderone immediately after the ablation. It is safe for a short period but I would not like to be on it for a long time reading about the side effects.
I got all my energy back after the ablation and enjoy life without persistent AF. I did shortcut the system with an initial private appointment with an EP. I am in the UK.
That's brilliant that the ablation worked for you Gincalpe. I also went privately after my initial diagnosis after the A&E visit and for 1st CV... as it took 4 months to get appt for cardiologist, so it really helped fast track when I eventually got into the NHS system as by then had had all tests and results to give to NHS.
Hi, reading this older post , just wondering if you could tell me about seeing ep privately. What I mean is … did you fine an ep was much better than a cardiologist? I have just seen a cardiologist on the nhs, very nice…and cardioversion is planned, but do wonder whether I should instead pay private for an ep consultation?
An EP specialises in arrhythmia which is caused by a fault in the electrical aspects controlling heart beat while cardiologists focus on the structure of the 4 chambers of the heart and valves and the blood vessels near it. It depends how much AF affects your QOL (quality of life) as a private consultation with an EP will probably speed up possible cardioversion and ablation on the NHS. That is what I did in 2018 and had a successful ablation within 3-4 months. I paid for an EP appointment recently when my AF returned and in a telephone call the EP diagnosed atrial flutter. I had an an NHS ECG at my local hospital which confirmed that. As a result I have had a successful NHS cardioversion and an NHS appointment in the EP clinic in Liverpool in December. You can get a private appointment within 2-3 weeks cost around £250. - £300. Good luck whatever you decide to do.
I was on it for a few weeks in 2018/2019, together with Atenolol and Digoxin. It was a real cocktail of drugs to try and control my heart after an almost auto-immune type reaction to my third ablation.
I had terrible skin rashes, despite staying inside away for the sun. Then a blood test showed a huge spike in one of my liver enzymes and I was diagnosed with bronchitis (doctors wouldn’t necessarily blame the Amioderone for that). I had to come off the drug. The issues with my liver and skin resolved within a couple of months of stopping the drug.
Thankfully my last ablation in March 2019 got things under control for me.
If you do take the drug make sure you are monitored very closely.
I had af in my 20s (now 71) for about 3 years and was put on amioderone. I felt amazing. From chronic tiredness to running up hills. That was until I broke out in a rash. I had an allergy. (I seem to be pretty good at alergies) They took me off it very quickly, then went on flecanide. They weaned me off flecainide and I had no more problems until a couple of years ago, occassional af then this year rapid AF 180bpm now on flecinide again and working well.
I was on Amiodarone for a year. Started on 200mg and this was gradually reduced over the year. Had blood tests to keep eye on side effects, which thankfully I had none. I am not a sun worshiper, always have sat in the shade so no problems with skin. From an AF point of view it was like a miracle, it stopped completely, my QOL returned to normal. Eventually I was taken off even the minimal dose (though it takes some time to get it out of your system). However the AF returned eventually and I agreed to have an ablation after having taken early retirement, partly due to AF interfering with work.
Am now AF free for over a year. As for Amiodarone I think you have to weigh up the benefits and cons, it’s different for everyone, some posts from people describe how they have been on it for years without problems, others reporting problems within weeks. Whatever you do I wish you good luck during your AF journey 🤓👍
Thank you Jen, this is all really helpful and as you say everyone is different. I realise ultimately the decision is mine, but this all helps to make that decision more informed.👍
Hello. I can add my experience but I'm sure you know that everybody reacts differently to certain drugs and you have already done your due diligence on amioderone. I was on amioderone for 6yrs. Monitored with 3monthly blood tests and bi annual chest xrays. I didnt have any side effects other than being super sensitive to the sun and having to be so careful with it.
Eventually the amioderone stopped working and I ended up in permanent AF for 2yrs.
Long story short, I've now had a pace and ablate and am happily trundling along.
For me, while the amioderone worked it was a god send for me even though it was always in the back of my mind that it was a particularly unpleasant drug.
Although I have not yet experienced persistant Afib I have a little expérience of Amiodarone.
I had an ablation for PAfib and my heart went bonkers after with a whole gamut of arrythmia. My ejection fraction dropped to 30 . Nothing controlled my HR. After reflection and my usual drugs not working I was put on Amiodarone for 2 and a half months . NSR came quite quickly and it has stayed so far. Obviously Paroxysmal and Persistant are 2 different situations. If you trust your EP and he feels this is worth trying perhaps consider it if he can give you a date for the cardioversion within 4 months. I had no side effects. But I would not have taken it for longer than 3 months due to the possible side effects long term.
It is the only drug that was effective for me and it is an excellent rhythm control medication. But it also caused underactivethyroid for me (at age 47. I'm 48 now). It happened in just a few months of taking (just took to support the cardioversion, wasn't on long term). However my mother has underactive thyroid and I may have been heading this way anyway. I also had some eye issues, but this resolved itself but they think this was the anticoagulation rather than amiodarone (small bleed). I had to stop taking amiodarone and was put on dronedarone. Thyroid issue is permanent. I was 18 years of AF. 10 years classed as persistent. 2 cardioversions had a similar result for as yours, about a day of NSR. 2 unsuccessful ablations followed. 3rd seems to have worked 6 months later....but it's early days. One month of NSR so far and zero meds 🤞🏻🤞🏻🤞🏻
It never ceases to amaze me how different everyone's AF journey is, and great that after all this time fingers crossed, yours seemed to be resolved. Thank you for your time in responding. 👍
Thanks for getting back. It seems confusing cos I have read numerous times that we need , with af, to stay on anticoagulants for ever, even after successful cardioversion etc.
I took amiodarone for just over two years at 200mg daily. I had no problems with side effects but it didn't work for me. I also read a paper that concluded that most of the problems with it were associated with the much higher dose regimes that used to be prescribed. Lower doses, up to 200mg daily were much less likely to cause a problem. Hope that helps.
I was put on loading dose for two weeks, then 400mg for two weeks then down to maintenance dose of 200 mg for 2 weeks … by week 4 i felt like crap and after badgering my surgeon finally got thyroid bloods taken and in that short period it caused hyperthyroidism 😬 everyone is different of course … not to be treated lightly and you have to listen to your body
I had a cardioversion on Aug.13th 2019 the second of 2 attempts for NSR. The first one lasted 3 days and the second one 7 days. The doctor then put me on 100mgs of Amiodarone daily. I've been in NSR since and have had no ill effects. They run tests every 6 months or so and I'm going to try an ablation to get off the Amiodarone.....if it doesn't take I will gladly go back to the Amiodarone because my quality of life the last 3 years has been outstanding compared to being in afib all the time. Good luck with whichever treatment you choose to undertake.
I’m on Amiodarone after a hybrid mini maze at the northern general. Initial they started me on a large dose which they reduce gradually over about 10 days to 200 mg once a day. I had visual disturbances and a metallic taste in my mouth at the higher dose. My biggest issue with it has been remembering to cover up and apply factor 50 sun lotion. My GP has been super diligent with blood test , I look like a pin cushion, in fact I’ve got another this morning, at present they are only showing a slight drop in my kidney function which I’m hoping will of stabilised. Hopefully they will either stop it or start to reduce the dose in August when I see Mr Hunter again, it was always short term to give the hybrid mini maze the best chance of success after 4 failed ablations. Next time you speak to Dr Lee it might be worth asking for a referral to Mr Hunter especially as it’s the same hospital, as hybrid mini maze and mini maze are proven to be more successful with stubborn cases of AF , it’s a more invasive procedure than catheter ablation and certainly more challenging then CV. Good luck with what ever you decide
Thanks 4chickens, yes read MummyLuv's and others, glowing reviews of Mr Hunter and I would certainly like to get a referral to see him, Dr Lee was not really very interested when I raised mini maze and basically said 'one step at a time'.
My consultant also said if I decided to go for it, they would 'front load' the Amiodarone over a period of 10 days gradually reducing it, so sounds similar to your case. I think the underlying problem here seems to be that my AF was likely undiagnosed for what I believe to be about 2 years (only symptoms being random breathlessness).
thanks for your feedback and would be interested to see how your journey continues....
2 years in undiagnosed AF shouldn’t be an issue, I’ve had AF that I’m aware of for 13 years off and on and suspect I had it before that, before my hybrid procedure I had been in fast flutter for 12 months 10 of those waiting. My GP had told me I had mild heart failure, since my surgery me most recent bloods show no evidence of heart failure. My EP in Leicester wouldn’t refer me to Mr Hunter, he wanted to do another ablation and if that was unsuccessful a pace and ablate. I self funded the initial consultation because of this. Read everything you can and ask lots of questions, would be my advice so when you make a decision it’s as informed as it can be.
I'm not sure if the Amiodarone has caused recently diagnosed Pulmonary Fibrosis, as I was put on this drug 12 years ago in order to correct A/F. and the Fibrosis has just been diagnosed, the second operation was successful, but not for long and I am living with A/F currently. So I think there are questions about Amiodarone, and you are right to be cautious,
how long were you on the amiodarone Ruuthmo ? That was my biggest fear when I was put on it , the lung issues as I know they are permanent . I wish you all the best with your health x
I think it was only 3 months, several weeks before the second Ablation and then for a short time afterwards. The potential risks of this drug were never disclosed to me and as usual I followed instructions given believing it was all for the best.
I can't yet say if this is what has caused IPF, but will come back to this forum once I have seen the Consultant after all the tests have been concluded. and let you know
I have direct experience regarding Amiodarone which is unfortunately quite bad. After I was diagnosed with AF and also heart failure in May 2021, I was prescribed Amiodarone which I took for less than 3 months. It didn’t help at all with my fast heart rate and AF but even during this relatively short time I ‘managed’ to develop hypothyroidism and some eye problems. So, the doctors stopped it. Since then any time when the doctors suggest me taking Amiodarone, I get hysterical and shout loudly: please no, I cannot tolerate it, so you have to find some other solution.
I’m quite similar to you - diagnosed at 42 with persistent AF but my cardioversion worked for about 4 days. My cardiologist seemed to think that after the CV failing so soon, another would be a waste and instead went straight for an ablation. I had ablation no 4 back in Feb and was put on Amiodarone. I was wary of the side effects too but my understanding is that these are due to being on it long term ( a year +). I’m currently in a reduced dose as they didn’t want to just take me off it and rock the boat. I’d say my side effects are sensitivity to the sun and I feel I can’t lose weight but otherwise ok.
Hi. There are always so many negative comments about Amiodorone, and I admit I was put off from taking it initially. I was diagnosed with AF following Covid, although I think I might have had it undiagnosed for many years. Being out of NSR made me feel really unwell. I had a CV in March 2021. I remained in NSR for 6 months. After accidently drinking a caffeinated coffee I went back into AF and HR 190. I felt really unwell. Because I was symptomatic my Cardiologist offered me an ablation or to try Amiodorone and after being on ot 6 weeks I would be cardioverted again. I had my concerns, but decided to go ahead. Within a week I started to feel a lot better, even though I still had the arrhythmia. I was cardioverted in March 2022. At this moment in time I am still in NSR.
Yes, Amiodorone has the potential to cause serious side effects, so monitoring by your GP is essential. My baseline blood tests showed I had subclinical hypothyroidism, so was started on low dose thyroxine. This had kept my thyroid levels in the normal range and I have never had to have the dose raised. For me, Amiodorone has been my saviour. I don't know how long I will be kept on it because of its toxicity, but read leaflets from any medication and you would think twice about taking it.
In truth, if you are a young person it probably isn't recommended long term.
At some point I might have to stop taking it, but until then I am enjoying the benefits of it.
My cardiologist emphasised that it is important to take it for 6 weeks prior to any cardioversion.
Amiodorone is not for everyone, but for a few of us it is the best drug on the market for maintaining NSR.
I also take 6.25mg of bisoprolol, and Rivaroxaban.
I am sorry to lower the tone of this incredibly erudite thread about the pros and cons of using Amiodarone to control AF but, in the words of a doctor friend who also had AF, “It’s toxic shit! Don’t stay on it too long.”
I didn’t stay on it too long but it still damaged my Thyroid function. Which reminds me, I must go and take my daily dose of Levothyroxine before breakfast!
You have had a rough old time with your fast AF. Bad luck. It can be a nasty and frightening illness, that's for sure. I get it in its fast form only occasionally, thankfully. So far as I have read, "cryptogenic" is a kind of stroke not a kind of fibrillation. It's one caused by a small blood clot, perhaps one that arose in the top of the heart from untreated AF. I am guessing you perhaps had a mini-stroke or TIA caused by your AF? I hope you are fully recovered from that now.
I never had to take amiodarone, but it was the next drug for me if an ablation hadn't come along as I am unable to take flecainide or sotalol. While looking into it, I did come across the study linked below. From this, it seems that the side effects of the drug, at least when used as it is today in low doses, are very different from its reputation. Although it's a drug of last choice, it seems to be still widely used.
It's worth taking into account that every anti-arrhythmic drug carries side effect and toxicity risks which is why beta-blockers such as bisoprolol and calcium agonists such as diltiazem are the usual first choice of treatment for AF. Amiodarone, apart from its risk of toxicity, seems to be one of the most effective heart drugs available.
Thank you Steve, by Cryptogenic, they just mean they don't know what caused it as no underlying medical cause after all tests, scans etc completed, which is obviously frustrating.
The study paper was very interesting and linked into some others too, thank you for posting that link, hadn't seen that.
Yes also been on Bisoprolol, now Diltiazem + Flecainide, so they are working their way through those options, which haven't worked so far,..
Almost 20 years of AF, 4 ablations and 3 CV;s. A couple of years ago blue lighted in to a local hospital where the Cardiologist admitted he wasn't too experienced with AF and loaded me with Amiodarone. Stabilised into NSR after around 6 weeks and remained so for 15 months until calcium deposits in eyes detected and persistent cough developed. Changed to Dronedarone 18 months ago which has been reasonably successful with only occasional relapses into low level short term AF. Cough and calcium deposits now gone. Not sure if there is any other residual damage. Decided to go with Pace and ablate and pacemaker implanted in Feb this year. Remaining on Dronedarone for the time being but since the PM implant I'm in continual NSR and feeling better, and working harder than I have done for many years. AV node ablation postponed for time being. Discussion with Cardio / EP (Mauro Lencioni Birmingham) to try and establish why the PM is effective when its not actually pacing me. Conclusion is that the PM is currently set to pace only if my BPM drops to 50 or lower otherwise it is on "standby". The start of an AF episode (regularly irregular) is often preceded by a pause which the PM interprets as a drop below 50bpm so starts to pace me for a few moments which then negates the AF and puts me back into NSR. It's an interesting hypothosis which seems to be borne out by the data downloaded from the PM.
My experience indicates that Amiodarone can be a very effective drug when all else seems to be failing. Longer term use should be avoided if at all possible. Regular blood testing may not always detect the more subtle negative impacts of using the drug some of which may remain with you for a long time.
Very pleased to hear that at last the pace and ablate has worked for you and you are living life to the full, am jealous! Thank you for your input which is appreciated,
The arrhythmia nurses at Papworth hospital tell me amiodarone is a brilliantdrug with side effects for "some". My cardiologist tells me side effects are rare with modern low doses. My EP prefers me to have a fourth ablation but since I had three in 20 months and felt rubbish for six months after each one and each lasted only about four months before failing I have declined. So I've been on amiodarone, my drug if last resort,since February. No side effects sofar🤞
I was on Amiadarone for 11 months. It didn't work to reduce, significantly AF episodes. Flecainide worked very much better in reducing both the number and strength of the AF episodes, but after 12 years I was found to be in Persistent, asymptomtic, AF, which I accept is Permanent AF. Only medication I'm on "for" AF is an anticoagulant, Warfarin being my choice. N.B. Warfarin does not stop anyone eating greens and other Vitamin K rich foods. My diet is vegetarian plus fish at least twice a week. My official medical records show the DOACs as contra-indicated.
Hello. Like many others here I was on Amiodarone for a short period. I am persistent AF.
I had done all the research work beforehand and told an eminent London EP that I was petrified of it. In no uncertain terms he told me to ‘man up’. He said it was my best chance of a successful CV and that I had to have a positive mind about the drug otherwise I was loading the gun against myself.
I took his advice and only contemplated the positive side of the drug. I actually went into NSR briefly before the CV purely due to the Amiodarone, picked up by my Kardia. I felt much better on the drug and the only possible side effect I could determine was a slight shaking of my left hand, which did disappear.
Sadly, CV driven NSR only held for 3 days. Came off the Amiodarone shortly thereafter.
I do wonder whether Amiodarone affects females more than males. This is just my completely unscientific deduction from being a member of this forum.
Interesting "man up" indeed 🙃 clearly bedside diplomacy went out of the window! Sorry to hear your NSR didn't last... incidentally - after being in NSR for those 3 days did you find your average pulse rate however improved overall? This seems to be happening to me for the 4 days since.... not sure if that will last though
I think I did the EP an injustice, he was strident but not rude. I was of course paraphrasing and trying to convey the sentiment. He was quite clear with me (and almost certainly correct in my view) that any negative feelings about the drug could have an impact on its effectiveness. I understood this and I took it on board. This in turn was the message I was trying to convey to you.
Amiodaraone has an HR reducing effect on its own ( so my cardiologist was happy for me not to be on Bisoprolol at the same time) and because the drug stays with you for several weeks/months after you finish taking it , I’m not sure any answer I gave to your question regarding HR would be accurate.
Incidentally, I subsequently googled Amiodaraone and its impact on male/female physiology and it appears that there might be some correlation to the different sexes. You might want to research further and question your cardiologist/EP on dosage.
Hi, my wife had a cardioversion after her paroxysmal AFIB became persistent. Normal Sinus Rhythm only lasted a week then the cardiologist put her on Amiodorone. Brilliant! NSR resored after 3 days. She started on 200mg three times a day then was on a reducing dose. Cannot remember exactly how it tapered off.She was very concerned, like you, about side effects but there were not any. She is now off Amiodorone after taking it for about 6 months but takes it if Afib flares up after a trigger of which there seem to be many eg caffeine,alcohol and very recently drinking very cold water.
Please note her cardiologist is not happy about her taking Amiodorone as and when required and wants her to have an Ablation which my wife is very reluctant to do.
Hi Andy, interesting use of Amiodarone as Pill in the pocket...but can understand her reluctance to have the surgery, I hope things work well for her. Thank you
Amioderone!? I was on it after a 2nd CV in 2002. I was very much an outdoor person and the sun sensitivity side effect was difficult to deal with. The icing on the cake was when it affected my thyroid and I lost a lot of weight in a very short period of time. They took me off it, put me on to flecanide and I was fine. Amioderone didn't work for me and I would refuse it if offered it again.
I've been on and off Amiodarone for the past 4/5 years as it seems to the the only thing keeping the NSR. I had a DCCV 15 months ago after going back onto it and it's kept me in NSR since.I did have an ablation 2 years ago which was unsuccessful.
I'm currently awaiting valve repair surgery so they will do a Cox Maze IV at the same time.
I do have vortex keratopathy caused by the Amiodarone but I've been told that should go when I come off it.
I usually get colleagues called in to have a look when I have my hospital eye checks 😁.I also have corneal deposits from the drug as well but they too should go 🤞.
Hi Tplongy. I’ve been on amiodorone a couple of months and so far had no drastic side effects. It seemed to effect sleep in the first few days, and sometimes I get an odd taste in my mouth, but to be honest I’ve felt fitter since taking this medication and less disturbed by night time heart flutterings. I understand entirely how you feel, but remember the EP has a duty to explain all possible risks.
We know that a cardioversion is more likely to succeed when on anti anti-arrhythmic meds. So in this instance I really would trust your EP cardiologist over any of the responses you’ve had here.
It’s a tough one. I once refused an endoscopy when I learned there was a minute risk of death! As someone who eats very healthy food and avoids chemicals it was a really difficult decision to take amiodarone. Especially as my heart is in good condition apart from the AF. However I have an excellent EP who is top of his field and who has explained this is my best chance with a second cardioversion due this coming Sunday. I am currently on a waiting list to have a catheter ablation so being on this drug and going through the CV is really just a stop gap.
I hope this helps. It would be great if the third CV kept you in NSR for a little bit longer. Mine lasted a week and it was this capacity to stay in NSR even for short time that helped my eligibility for an ablation at a later date.
Just one more thing you might want to consider getting a second opinion by booking in with a private EP specialist as the cost is less than you might imagine.
Please keep in touch and let us know how you get on.
Hi Rainfern, thank you for that, as you say, my difficulty is that as I have no other medical issues at all, echocardiogram showed no issues with heart, the decision to take something that may solve one issue, only potentially to replace it with other (in some cases) irreversible conditions also requiring medication (thyroid etc), is a very big step to take.
Actually that is a very good thought to get 2nd opinion privately, having gone private initially thinking (very naively!) that I could just have a CV and bham, that would be it and it would be sorted! Yes very funny in hindsight knowing what I now know!! So that is a great suggestion, thanks.👍
yes my brother was on long term Amiodarone during lockdown. It damaged his thyroid and lungs. His thyroid is back to normal but his lungs are still problematical.
I had a successful CV Dec last year. I started Amiodarone in Oct. I was promised it would only be for six months. After me chasing the NHS I was finally allowed to drop it after EIGHT months! My hair has thinned a lot and I’ve had a cough on and off during that time but it’s kept me in rhythm. I was taken off it 17 June . So far… good.
My sister has been on 200mg of AMIODARONE for 20 years! Only side effect… her skin is very badly marked on both arms despite using prescribed sun tan lotion at factor 50.
Just make sure that if you agree to having it that they honour their side of the agreement on ‘ how long for.’
Please note many get on fine with this & that I am often sensitive/allergic to many medications. This is probably quite a rarity that this response happens but nonetheless I felt it should be mentioned. Last year I was put on Amiodarone & like you worried about the awful side effects. I lasted 4 days on it and realised I was allergic to it. After the first dose it was a good few hours before I noticed an itchy patch on one arm which I thought was eczema. Over the days the itchy patch became an all over body response where I felt I needed to claw my skin off. Over that time the itch turned to prickling as though I was being bitten by a thousand ants, progressed to a burning feeling inside and outside my body. I began to notice this reaction increased each time I took a tablet, whereas it started spaced out by hours it got closer and ended up about 30 minutes after taking. Finally the last two doses caused me to feel I could the outline of certain organs, like I could feel the shape of my lungs & thyroid in particular. The last dose gave the feeling my lips, tongue & throat were going to swell & a severe stinging feeling inside and outside my head and face - I stopped the drug at that point and symptoms went. However all my reactions left the the initial patch on my skin sensitive to anything & everything. I am finally in NSR since about March this year following 3rd ablation last Nov. I had had 2 ablations previously in the last 17 yrs and never had a Cv or anti-arrhythmic drug until last year. As I said initially, I am probably just a rarity and wish you all the luck in the world of finding something that suits and sorts you.
thank you ~Afibflipper, really dreadful reaction how awful for you! Even if you are in the minority, doesn't make it any easier experiencing that, v. pleased that you are now in NSR, long may it continue!
Hi have just come off Amiodarone after some 12 months - regular blood tests showed that it was damaging my liver and kidneys and was relieved to have an ablation which seems to have put me back in NSR but for how long we don't know.
My personal experience is that the side effects of long term use of Amiodarone were not acceptable for me.
I have been taking Amiodorone for about since about 2010 without any problems apart from having to be very careful in the sun. If I were to just stand without any covering on my head my scalp would start to irritate very quickly. If I have to be out in the sun I wear a hat and cover up as much as I can. Other than that I am not aware of any other problems. I take 100mg per day as well as other medication plus I have a ICD fitted. My initial problem was an arrithymia.Hope all goes well for you.
Yes, I do! You sound a lot like me, apart from an eight year age difference - I’m 65. I have a healthy heart and, apart from a slight touch of COPD, I have no other comorbities.
None of the usual drugs were preventing the PAF I was getting (2-3 times a week, lasting 1-3 days with HR averaging 160-180.) In fact I developed side effects to all of them.
Strangely, like quite a few on here, my PAF went crazy in October 2022! 🧐
I was started on Amiodarone about six weeks ago in an effort to control the PAF while I waited for an urgent ablation. Like you I had (and still have!) enormous reservations about this drug and it’s long list of potential side effects - plus it’s extremely long “half life”. Plus every time I’ve told a medic I’m taking it, they seemed to pull an “Oh sh*t” face. Pardon the language, but I definitely started to see a pattern emerging.
Symptoms;
Constipation, double vision at distance (are there two people on that paddle board out at sea?!? 😲), God-awful sparkling “halos” around the headlights on cars on the other carriageway (haven’t tried evening/night driving since 🫤).
It dropped my nighttime Obs too low - HR dropping down into the 50s (sometimes down into the upper 40s), my breathing rate and oxygen dropped into dangerously low ranges. In the last week or so I started to cut the tablets in half to 100mg and that helped enormously and produced much better (normal) readings.
It didn’t have any effect on the frequency of the PAF episodes, but it did reduce the length of them to around 1 day, and my HR while in AFib reduced to around 110-120. However the AFib was markedly more erratic with my HR rapidly changing (“flapping around” as I called it) from 50-150!! The cardiologist came to see me on the ward when I was admitted one day and his face when he watched the ECG was almost comical. He said I needed an ablation ASAP and he wanted me off the Amio as soon as possible.
I had an ablation last Thursday and was told to stop taking the Amio straight away. I was glad I’d been cutting them in half for the last week, otherwise I’d be coming off it cold turkey. The other downside is that Amio has an horrendously long “half life” and can take weeks, if not months, to clear out of the body.
Yes does sound a scary experience and I am sure you will be glad to be off it, really hope the Ablation works for you long term. This is what is so confusing, after being on Edoxaban blood thinners since oct last year, my cardiologist told me to stop taking it after the CV last Thursday as I was only 1 on the risk scale, ie that being I am female. My initial private consultant first thing he said was also "dont understand why A&E put you on blood thinners with your risk level", but nevertheless never changed it.
Having had about 5 telephone consultations with my NHS cardiologist but never actually physically met her, wondered if actually meeting her in person on Thursday informed her decision to take me off them?
So on the one hand now taken me off blood thinners, so down to only 2 tablets a day (as life basically ground to a halt on Bisoprolol), now the prospect of taking another one with even stronger potential side effects, and as you say, the very long half life, is making me very twitchy.
Even more similarities! I too can’t tolerate Bisoprolol - actually I can’t tolerate anything ending in “lol”. Lol. It bottoms out my BP.
I too have consulted privately with cardiologist. I never did get to see a cardiologist and it was the only way to get any information about my condition. I only had one telephone consultation with a nurse where (with a consultant’s approval) she prescribed Digoxin and Flecainide….. over the phone!! She said to go home (alone I might add), take the drugs and “if you have any concerns you can call us anytime in the next 12 months”. Are you having a laugh?!! 😡 She got defensive when I started to ask too many questions and ended the call quite abruptly.
I immediately booked in privately to speak to a consultant and the first thing he did was book me for an urgent CT scan, saying “They should have done that as a matter of standard procedure before prescribing Flec, as it may not be the right drug for you”. 🤨 Plus, after looking me up and down (I’m petite), he reduced the digoxin from three tablets a day to two! Suffice to say Flec gave me horrendous constipation and then double vision, plus neither drug helped suppress the PAF in the slightest and they were stopped.
I’m on Edoxaban 30mg. Are you still getting AF? If so I’m surprised they’ve cut the anticoag.
Yes, fingers crossed for the ablation. I was told it was “acutely successful” and I shouldn’t get anymore PAF. 🤞🤞🤞
I just wished I’d been told more about a) the higher HR (now around 80-100 on mild exertion), b) the nasty bruising which has just appeared after five days, plus c) the sleepiness/tiredness. Just read a study that patients are not infirmed enough about these things. It’ll all pass in time, it’s just a bit disconcerting.
Cardiologist said I was about as low risk factor as it got, so said that's why she was taking me off the Edoxaban?? who knows.
I agree about the questions, ask ask ask - I do some people (clearly not the ones on this forum!) prefer to be given tablets without asking or finding out the why's and wherefores, so when medical staff come across someone who actually wants to be well informed can be hard to extract the information you need. Thank goodness for the internet and forums like this!
Sorry that you are experiencing those side effects of the ablation, hopefully your heart rate will calm down after a while, as will the bruising. This time after my CV (it took two go's) I had pad burn marks front and back which were sore/itchy and felt like I had been kicked by a horse on my left hand side. didn't get either on my first CV but was warned it could happen...
Iuch! That sounds painful. Thankfully I managed to avoid two CVS - by a whisker. I read another interesting study (yeah, I research and ask, ask ask 😀) that identified two distinct types of patients. One they named Blunters and they’re the patients who don’t want to know anything about anythjng; the less info the better, as that makes them feel more confident. The other type they named Monitors and they’re the type (like you and me and, I suspect, most people on this forum) who want to know all about everything. That doesn’t mean they fixate or that they’re hypochondriacs, it simply means that for these people more information makes them feel more secure and in control. Interesting stuff, eh?!?
The only trouble is, I generally that NHS staff prefer to treat everyone as a Blunter and they simply can’t cope if you start asking too many questions or sound slightly knowledgeable about your own health and well-being.
agree with your views in the last para Dippy, thru my other experiences. Can't blame the NHS staff, some people react badly to the truth and you can never know, so I guess the path of least resistance is to only give the information required or asked of.
I was initially on Amiodarone for a few months, then after my valve replacement and still with af I was swapped to Digoxin. I still have af but I don't really feel it. I only know when I check with watch ecg that I am in af.
Yes, both amiodarone and the related dronedarone. The doctor summarised my experience as "you nearly died" [due to amiodarone and dronedarone]. There is a paper about my case on the Royal College of Physicians of Edinburgh (Case of the Quarter). It took the third admission to hospital with blood oxygen at 76% for pulmonary toxicity (aka: cryptogenic organising pnuemonia) to be diagnosed and treated. I was on high volume oxygen for three days, and then on prednisone for a year. That gave me high blood pressure and with AF, that gave me a stroke.
If you are presecribed amiodarone or dronedarone things to watch out for: a non-productive cough; blood oxygen below 94%, when breathing there is a sound like Velcro pulled apart, if clinicians say you have community aquired pnuemonia but antibiotics don't work - you have pulmonary toxicity. Clinicians should be aware that lung sounds with pulmonarytoxicity are in a different section of the lung than pnuemonia.
I was diagnosed and treated by the North Bristol Lung Institute.
Was on Amiodorone for about 15 months seemed to keep me in NSR. Came off after my Mitral Valve replacement. 2 months later my thyroid levels were off the scale high and really unwell. 2 years of steroids and thyroid meds finally thyroid back to normal. Now in AF pretty much all the time.
It was caused by the Amiodarone. So cannot and would not want to go back on it.
I’ve been on amiodarone for over two years and it’s been like a wonder drug for me. My dose was lowered from 200mg to 100mg daily after a year because it was lowering my heart rate too much for comfort but I’ve been absolutely fine in terms of any other side effects. I have to be careful in the sun and I have blood tests every six months for monitoring. I do have corneal deposits but my eye consultant says they are of no consequence whatsoever. My main fear now is actually of having to come off amiodarone rather than stay on it, because it has transformed my QOL! If I stay as I am now, I’ll cheerfully be on it for the rest of my life. Of course I recognise that it can have serious side effects and I very nearly refused to take it after reading about those, but I’m so glad I did take it.
Hi Tplongy, what a lot of differing replies for you to consider ! I was about 53 years of age when I was advised to take amiodarone prior to second cardioversion . Like you I knew about this drug as my lovely brother was on it for the last 10 years of his life . He had heart failure along with AF , secondary to congenital heart defect . For my bro , it was literally a ‘life saver ‘ . However he had a grey colour to his skin and never went in the sun . Apart from that he didn’t experience many side effects . I was supposed to go on it for no longer than 12 months but in the end was on it for 15 months as it was holding me in sinus rhythm . However I never felt well on it . I felt nauseous much of the time and had NO energy . I then experienced the calcium deposits on the cornea which reduced my distance vision too much to accept . After coming off the med it took about 2 years for this to resolve . However I didn’t get any of the other nasty toxic effects . I have since had a third cardioversion and 2 ablations but after 8 months or so the dreaded AF returns in a persistent and god awful way . I have been on dronedarone , amiodarone’s less effective ‘ sister drug ‘ previously and am on it now . No side effects and I feel good on it but eventually it will probably stop working , as it has before ( sounds pessimistic but I think it’s more realistic !) .
My thoughts are that being aware of the toxic side effects and being vigilant about your symptoms you should not experience the awful permanent effects , and maybe taking for 6 months max would be worth a try .
Thanks Ossie, sorry to hear about your experience, as you say, lots of different experiences, but not surprising considering everyone is different, age, condition, health etc, but all adds to the knowledge. Fingers crossed and understand to be pessimistic and not feel let down, rather than be overly optimistic and then gutted when things dont work out.👍
Such a lot of interesting comments on this thread. I have been on Amiodorone for a few months. 1st Cardioversion in January lasted a week. During that week I did not feel better but the doctor (and I) wondered if that was because I felt so utterly dreadful on Bisoprolol and Diltiazem. So I was taken off those & put on Amiodorone. I had another successful Cardioversion 2 weeks ago today & still in NSR. So far I have not noticed any side effects but very aware of the risks of this drug. I wouldn’t say I feel amazingly well being in NSR but I do feel a bit better & others have commented on how well I look. I was told the Amiodorone was to see how I felt in NSR & might therefore mean I am a candidate for an ablation. It is only meant a a short term thing. The information from everyone today has been so useful - thank you.
Yes I spent 9 months struggling with Bisoprolol, amending dosage, changing when it was taken, nothing took away the debilitating tiredness and dizziness. Been on Diltiazem now for a month and tiredness is better, though dizziness still remains. This may be due to the actual AF, but as I wasn't in NSR long enough to ascertain whether I felt better or not, its anyones guess.
I was put on Amiodarvone as a last report med last Dec. it lowered my blood pressure and 3 months later when my BP hit 38 I went to the ER. At that time learned my normal Thyroid panel had tripled and my sugar went up alot. It was the Amiodarvone…as you said not all people have reactions, it was a menace to me. As it was the last resort I now have a PM.
Yes, I was prescribed Amiodorone after an ablation, and the side affects were, for me, horrendous. The fatigue was debilitating, and I felt as though I had the worst flu. At my surgery follow up visit, I let the EP know if the side affects and he put me on diltiazem. Better, but not great - diltiazem causes me intense fatigue and most afternoons I need a nap.
I'm scheduled for another ablation in July, having been told that often times the second one "holds" when the first one doesn't.
Hi Tplongy - I was in persistent AF - my Cardiologist prescribed Amiodarone - I was so nervous about the side effects it remained in the drawers for 3 months. When I finally took the plunge, exactly 6 weeks to the day later NSR was restored - I felt great for a couple of years apart from avoiding the sun and having my nailed 'shellaced' as I burnt very easily. Sadly, i had to come off it as I developed overactive thyroid and felt really ill. I really wish I could have stayed on it as nothing else has worked and I am back in persistent AF and beyoind the point where an ablation or CV would do any good. I asked my Cardiologist about Dronedarone as a substitute as this should not affect thyroid fungtions - and he said it would be like drinking coffee with the caffeine taken out i.e. not much good. Good luck - I hope it works for you, Suzy.
Hello, I can understand your concern about taking Amiodarone, my Optician was surprised that it was still prescribed in fact my GP was reluctant. I took it for about 9 months, blood tests showed mild effect on kidney function. This worried me so much that I gradually reduced dosage until I came off it. I am not suggesting that is the right course of action for you before you discuss with a Consultant or GP. Best wishes.
My brother in law took that drug for one year but his cardiologist didn't monitor him as your doctor is advising you what would needed to be done when on that drug. Consequently, my brother in law lost his peripheral vision.
My mother had every side effect you will read about from amiodarone and it certainly affected her quality and (I believe) length of life.
The half life of the medication is very long, so any side effects will also be and many side effects did not leave her after it was d/c. Yes, she got pulmonary fibrosis and many neurological issues she had never had before.
Yes Penturner, that's one of the major issues with it, that just stopping it doesn't take away the side effects immediately and some are irreversible too. Really sorry to hear how badly it affected your mother.😧
Assuming you are in US, another option is Tikosyn ( often docs don’t like to use it because you must be hospitalized for 3-4 days to start). But if you tolerate it, and I do, it’s much safer than amiodarone long term. I am a small woman ( 5’2”, 118 lb) and have been taking it since 2018, with zero issues. Nothing else worked . Amiodarone was suggested. I refused. I also have a pacemaker to control tachy- brady. Good luck.
I am a 65 year old lady, and have lots of experience of amiodarone! I have had 2 cardioversions and 2 RF Ablations, all of which lasted for a few weeks, before going back into AF. My EP scheduled in another cardioversion, to be followed by another ablation, but prescribed amiodarone in the meantime. When I went in for my cardioversion, my heart was in NSR, thanks to the amiodarone, so I am now temporarily discharged, on amiodarone, until and unless my AF returns. So, it works for me in keeping my AF away.
However, there are downsides. My regular blood tests have found that I have hypothyroidism. I think that it has always been there, but the amiodarone may well have exacerbated it. I also have intermittent hyperkalaemia (high levels of potassium in my blood), which may be another amiodarone side-effect. The other effect is that my optician has found that I have corneal keratopathy caused by amiodarone. I reported this to my EP, but he said that, unless it was causing me problems (which it currently isn't), I should carry on with the amiodarone.
So, in summary, amiodarone can do a good job, but must be carefully monitored,
Hi, I have direct experience of being in persistent AF for 3 years and taking amiodarone. Following a failed cardioversion I went on it in Sept 2021 for almost 16 months then I had an ablation in January 2023, 5 months ago. To begin with I was prescribed amiodarone 3 times daily, within one week I was in normal sinus rhythym. I felt fine but after 3 months I had a bad episode where my heartrate dropped to 39bpm and the dose was reduced to one tablet every other day. During the time I took amiodarone, I had regular blood tests to check for liver, thyroid and kidney damage. I developed an underactive thyroid and still take medication for that. For me, the worst side effect was photosensitivity to sunshine and my skin itched all over if I happened to be in the sun. Once I had had the ablation I stopped taking amiodarone and my skin feels back to normal. I am still taking medication for the thyroid condition and, touch wood, I am still in normal sinus rhythm but I hope to have blood tests soon to check whether there is any damage, hopefully not!
Hello there. Here is my story thus far. Diagnosed with SVT over 3 years ago but always 'symptomatic' after cardioversion and Bisoprolol. Changed to Sotalol with still ongoing symptoms. Anyway I moved back to Aberdeen and it was then that I was referred back to Cardiologist. I was given an ablation date and was advised to stop the Sotalol 3 days before Cardioversion. My heart didn't like that at all so I found myself back in Resus 2 days after stopping the Sotalol. 3 doses of adenosine later and still my heart wouldn't convert back to normal rhythm so they were about to do Cardioversion when it decided to go back to acceptable rhythm, however, when they were administering the Adenosine they picked up A Fib so I was duly admitted to hospital. The Ablation was done the following day as planned but wasn't a success and my Cardiologist advised me that I have multiple arrhythmias along with A Fib - there's more but I'll give you basics. I was then transferred to Cardiology ward and overnight went back into arrhythmias and it was then decided to give me 2 x loading doses of Amiodarone as my heart objected every time I got up out of bed and they said it was starting to 'struggle' Found myself in CCU overnight whilst getting Amiodarone then next day they had to stop infusion as my arm was all hard and red. I then started on 6 x Amiodarone daily for 6 days and spent 10 days in hospital overall. Discharged and now taking 200mg daily along with Apixaban. I am tired all the time, sweat very easily, nausea, dry eyes oh and constipation!!!! I've had another consultation with my Cardiologist and I am still in arrhythmia and have been since being discharged. Some days worse than others and my heart definitely doesn't like when I go to bed lol, but I just try to live as normal a life as I can, but as the Amiodarone still doesn't work he is going to try another Cardioversion, but ultimately looking at pacemaker. He isn't doing another ablation as he said it will be too complex given my arrhythmias. Long story but based on my experience so far [3 months] I can assure you that if it's right for you then you could try it. I would also mention that I had a range of blood tests to since leaving hospital and everything is fine so far. If the Cardioversion is successful then he'll be looking to reduce my Amiodarone. Apologies for the long-windedness of my story and I hope you get some answers and decide what is best for you.
I've been on amiodarone for 5-6 years now 250 mg and have regular check ups and and tests periodically and it always shows everything is as it should be, blood pressure always around 107/68 afib every three days converts in 24 hrs and so it goes. My EP told me this was a drug of last resort nothing else so I tried it and it's been ok so far. During covid I didn't see my EP for any kind of tests at all for about two years and when I finally went to see him and had tests done everything was fine. I menttioned to him how a lot of people are terrified of this drug, myself included and his response was " all you ever hear about amiodarone is the negative things but you hardly hear about the good it has done and is helping tens of thousands of people deal with afib". So far he has been right, in my case anyway. I'd rather live with afib episodes every three sometimes seven days and have it convert on its own than to deal with afib 24/7 with heart rate of 230BPM as mine was when first diagnosed. I would just pray about it and you will get the answer you're looking for. GOD Bless and have a wonderful day. PS; My Eps name is Dr. Ronald Lo in Loma Linda Ca. if you'd like to google him.
Hi, I was prescribed Amiodarone approx 18 months ago. I, like you was somewhat concerned after all the negative feedback. However, I have had no side effects at all, in fact it gave me a sense of confidence as the AF never returned. I came off it quite reluctantly last month after a cardioversion....I would not hesitate to return to it.....My experience of Amiodarone was a positive one.....
Amiodorone ruined my life, had all the side effects lungs, thyroid ect. My Veteran's cardiologist took me off of it and also the beta blocker. It took months to get the Amiodorone out of my system.I was good out of AFib for four years including the time of a serious injury in 2020. Where I had major surgery ans spent 7 weeks in the hospital. I'm 2023 I was moving and tripped on a threshold landing on my chest. Then I went into AFib tachycardia
I failed to mention I have .mitral valve regurgitation. I had another cardioversion and they put me on Tikosyn. I tolerate that well and have only an occasional bout of a fib and no tachycardia. I'm 82. I take 3 mg warfarin daily and self check my INR.
Amiodorone ruined my life, had all the side effects lungs, thyroid ect. My Veteran's cardiologist took me off of it and also the beta blocker. It took months to get the Amiodorone out of my system.I was good out of AFib for four years including the time of a serious injury in 2020. Where I had major surgery ans spent 7 weeks in the hospital. I'm 2023 I was moving and tripped on a threshold landing on my chest. Then I went into AFib tachycardia
I failed to mention I have .mitral valve regurgitation. I had another cardioversion and they put me on Tikosyn. I tolerate that well and have only an occasional bout of a fib and no tachycardia. I'm 82. I take 3 mg warfarin daily and self check my INR.
I was put on amiodorone for a short while before and after my third successful cardioversion had none of the side effects apart from a slight rise in thyroid which once I came off the amiodorone after the specified time after the CV went back to normal within 6 weeks. I was checked every month with full blood panel whilst on the amiodorone, some people are on amidorone for much lo0nger than I was and also have none off the side effects. That is the thing with side effects some people have all of them but only slightly, some have a few but have them to a higher degree and some people have none of them. I would give it a go and ensure that you are checked regularly and have the CV as agreed. The fact that the CV does work for you - even if only for a short while means that other treatments may work - such as ablation.
Like you the bisoprolol and other beta blockers, calcium blockers and combinations of rate control medication put my HR down to 36 when resting and I felt awful - but then I had low rate AF so never had racing heart beat.
I have been taking this drug for over 2 years. At first it was 200mg and then reduced to 100mg daily. Yes there were some side effects at 200mg. At 100mg I am all right. I am monitored by a cardiologist and a pulmonary doctor. This includes blood and lung function tests with a chest x-ray at times. All has been well so far. There is some fatigue. I have 8 stents and a pacemaker along with afib. With my other meds it can be hard to separate out the side effects. I take it one day at a time. I was afraid of the drug at first but now it's just life for me. I wish you well.
Good Morning, I was on Amiodarone in 2012/2013. I had no side affects at all. Then I had an ablation and they said I had to come off it. Since then I have been on loads of different meds for my AF. I am 73 and my cardiologist suggested going back on it I said but you can’t be on it long term. She in s a lovely lady but her answer was you are $3 so what is long term, I felt a bit peeved at the time. I didn’t go on it as it does worry me now. But if it is your first time for the benefits I would give it a try. Best wishes.
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TERRIFIED AMIODARONE
Amiodarone
Amiodarone 
Amiodarone 
Bradycardia and Amiodarone 
