Amiderone 200mg / daily: Hi everyone... - Atrial Fibrillati...

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Amiderone 200mg / daily

jimmygea profile image
43 Replies

Hi everyone

So I have been prescribed 200mg p/d and Apixiban 10 mg twice per day, for the past 8 weeks and this stopped my persistent afib however, I am still waiting to get cryo-ablation hopefully the beginning of 2025, until then I’ve been advised to continue taking this drug as he said that is more than likely come back if I stop taking it.

Therefore has anyone any had experience in taking this drug long term as I’m aware that it’s not good for your kidneys, so wondered if I should ask to switch to Dronedarone as it’s less toxic to the body, has anyone switched and did they find it to be as effective?

thanks

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jimmygea profile image
jimmygea
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43 Replies
BobD profile image
BobDVolunteer

Dronedarone is far less effective than amiodarone so provided that you are monitiored for the amiodarone and of course stay out of sunshine I would not ignore the advice of your consultant . Short term use is usually fine.

RF260 profile image
RF260

Hi, I'm just about to start Amiodorone in preparation for a Cardioversion soon (assuming the Amiodorone don't convert me in the meantime) Can I ask did you take a loading dose to build it up over first couple of weeks , have you experienced any side effects and do you feel better being in sinus rhythm? I too am likely heading for ablation but don't know when, just hoping Cardioversion works and holds , thanks and best wishes.

jimmygea profile image
jimmygea in reply toRF260

Hi

Thanks yes I started the first week on a loading dose, think it was 600mg p/d for the first week, then reduce to 200mg, I was also booked in for cardio version but as the drugs worked and returned to to sinus rhythm, so have been out of afib since 24th Nov.

Side effects - loss of appetite which has lead to weight loss also tiredness especially mid afternoon but also disturbed sleep. Has also been reported that my renal function is low, therefore the are keeping an close eye on that aspect.

Hopefully the drugs worked for you too!

DogLover9987 profile image
DogLover9987 in reply toRF260

My cardiologist put me on a two week loading dose of amiodarone of 400 mg twice a day. I didn’t notice any serious side effects other than being tired. I’m down to 200 mg once per day and feel fine, other than the persistent afib. But with beta-blocker I hardly notice the afib unless I am exercising. I also take apixaban, of course and high blood pressure meds. Will be having my 4th cardioversion in the new year. Hopefully the amiodarone will help keep me in sinus rhythm until I receive an ablation.

Cliff_G profile image
Cliff_G

The difficulty I have here is that Amiodarone is such a long-acting drug, you will (in my experience) need to come off it a good time before any ablation.

For my ablations I was only on Flecainide (first time round) and Diltiazem (2nd time) and had to stop for 1 to 2 weeks, so the EP can see what your heart is actually doing, and not being suppressed by the drug.

Amiodarone takes months to work out of your body. I was on it for 5-1/2 years and despite all tests proving satisfactory I had to come off it for its general side effects, and it took 6 months almost to the day for my heart to break into atrial flutter then degenerate to fib ober the next 6.

As Bob says, Dronedarone is less effective. Maybe as you're scheduled for cryoablation, and this is pretty much a defined PV sleeves ablation, then it's not as important to be off it to see electrical activity. Anyone?

jimmygea profile image
jimmygea

I have an appointment tomorrow with my cardiologist, so I’m hoping to get the cryo-ablation within 6 weeks as at present I can’t work offshore whilst on these drugs. But definitely want to be off the Amiderone before the summer comes round as love to bask in the sun and don’t want to end up blue, Have you had any of this effects since you’ve been on it for 5.1/2 years?

Gowers profile image
Gowers in reply tojimmygea

I have been on 200mg Amiodarone for 18months after 3 week loading dose - looking to come off it & have pacemaker as it is causing a tremor - I was aware it was a medication of last resort due to side effects but, didn't realise this is a side effect until reading the leaflet information in more detail. Anyone else have this side effect? It is though for me the most effective drug for AF & I have tried a lot!

SweetMelody2 profile image
SweetMelody2 in reply toGowers

Dear Gowers~Good for you! My experience tells me that getting off amiodarone ASAP and getting a pacemaker is the best if not only way to kick afib out of your life and get back to normal living.

Amiodarone doesn't “cure” anything. It slows nerve impulses to your heart—and every other organ and cell in your body.

Amiodarone reduces the number of afib recurrences and cardioversions post-ablation for a few months, so it is touted as helpful. It keeps people out of the hospital and away from the more expensive and often longterm less reliable cardioversions. Meantime it’s having a negative effect on all kinds of bodily functions, AND has no longterm effect on afib recurrence after it is stopped. There’s a study that shows that six months after an ablation, those who took AAD’s and those who did not following an ablation had exactly the same percentages of recurrence! In other words, amiodarone is not proven to correct the functioning of your heart or help you stay out of afib without it post-ablation. All it does is keep afib at bay….to be dealt with another day. One cannot take amiodarone indefinitely; the side effects are severe.

Keeping afib at bay for a bit may seem like a good thing, BUT amiodarone’s side effects for me were insupportable (as were those of others in my panoply of drugs—but amiodarone was the worse offender). If my ablation (#2) failed, then it failed—which it did. No amount of amiodarone was going to fix that, or any other drug. I needed to find a solution.

Now with a pacemaker, afib no longer is a concern and my life is drugless (I also have a Watchman, so am off anticoagulants) and back to normal living.

I understand I am opinionated about amiodarone and that others find it a good drug for them. I’m just sharing my thoughts and experiences as you wend your way through the tangled pathways of the afib journey. Good luck!

RF260 profile image
RF260 in reply toSweetMelody2

It really is a tricky decision, to amiodrone or not..I have today picked up a supply that I will start taking in a couple of days ahead of my first cardioversion in about a month's time. I have had persistent A fib since August and suffer horrendous fatigue that has badly affected my life, so I'm going to try it but will do all I can do be on it for as short a time as possible, hope the CV holds for a good few months while I go onto the ablation waiting list. I am bracing myself for some side effects and will get all the necessary blood tests as soon as possible.

jimmygea profile image
jimmygea in reply toRF260

To be honest I haven’t really had any real negative side effects apart from tiredness during the day requiring a nap! But Amiodarone worked for me and stopped my afib so was able to get back to the gym and did not require cardioverted so that was a positive, but hopefully get cryo-ablation early 2025 and hopefully come off the Amiodarone and Apixiban

SweetMelody2 profile image
SweetMelody2 in reply toRF260

Your plan sounds just right to me.

I hope the CV gets and keeps you in NSR. It does happen. And you can get off amiodarone as soon as possible. I believe there are stats showing a greater CV success rate when a patient is on amiodarone or a beta blocker prior to a CV. You could look into that. I’ve tossed all my notes on studies I read.

Soul-crushing fatigue and bradycardia, both mostly due to amiodarone (resting HR 42-45), are principally what made me determined to get off it.

In the last few months prior to my pacemaker and AV node ablation, I preferred staying in afib and atrial tachycardia (120-140bpm) to taking amiodarone again, which was offered. I tried pill-in-the-pocket metropolol, but it was ineffective. CV’s didn’t last more than 5-6 days usually, no point in just doing them one after the other, so we just bided our time until I could get the pacemaker. It wasn’t too bad.

At any rate, I’d rather be in afib and tachycardia than on amiodarone, which can give you an indication of how much I disliked (hated is not too strong) that drug.

At the same time I acknowledge that it got me out of a big afib episode with a HR of 170. It does have its uses, but I stayed on it only 6 weeks, 6 miserable weeks. It had converted me chemically, but staying on it longterm was out of the question given its side effects and lack of longterm success in maintaining NSR once it was stopped, which was necessary because of the dangers it poses as well as awful, for me, side effects.

Not everyone has that reaction. I think you’re doing the right thing by taking things one step at a time, then re-evaluating as you go along.

mav7 profile image
mav7 in reply toSweetMelody2

Very informative posts  SweetMelody2

May I ask if your afib was paroxsymal, persistent, or permanent (more than 6 mos normally) ?

In your bio, you list your age as 83. May I also ask what age you were for the pace and ablate ?

Thanks !

SweetMelody2 profile image
SweetMelody2 in reply tomav7

Persistent Actually, I’d say intractable. (-: We tried everything.

82 for P&A. I’ve only been 83 for a couple of months.

Afib was first diagnosed when I was 78. I’d had Afib for at least 20 years before that; just didn’t know it and no doc picked it up. Afib is wily. It’s like it knows when you are in a doctor’s office or have a once-every-ten-years ECG that it needs to behave and go into hiding

From diagnosis to P&A was a real slog. I’m so glad to be out of that morass.

Best wishes and Happy New Year!

mav7 profile image
mav7 in reply toSweetMelody2

Best wishes and Happy New Year!

Same to you !

Share similar history. I am 78, discovered at 75, but felt I had it long before. Pretty well controlled with Metoprolol and qualify of life is not that bad. But always looking to improve as you did.

May you have continued success !

Gowers profile image
Gowers in reply toSweetMelody2

thank you for your reply and information. I tried reducing to 100mg but after 3 weeks hr was all over the place no AF just a lot of ectopic.

your information is very helpful as you have obviously benefited to coming off it.

BrotherThomas profile image
BrotherThomas

I took 200mg pd of amiodarone for about 2 years without any problems at all. I wasn't told to take a loading dose though. I came off it because it didn't work for me.

jimmygea profile image
jimmygea in reply toBrotherThomas

So you never had any issues with sun exposure turning your skin blue?

BrotherThomas profile image
BrotherThomas in reply tojimmygea

No, I had no side effects whatsoever from it.I also ventured out in the sun near midday in summer and had no problems. I was under the impression, though, that it made you more sensitive to sunlight in terms of increasing the liklihood of burning and blistering rather than turning you blue.

SweetMelody2 profile image
SweetMelody2 in reply toBrotherThomas

It amazes me how different drugs affect different people so differently! I can’t imagine being on 200mg amiodarone for two years. I’d be a zombie. (See my response to jimmy he’s above). I’m so surprised it caused you no ill effects, and also that it didn’t work. It’s a potent drug.

BrotherThomas profile image
BrotherThomas in reply toSweetMelody2

I was taking it in the hope that it would make a CV last longer. It took about 18 months to arrange the CV, my third, and it was successful. The previous two were also successful. However, by the time they got around to running an EKG, 4 months I was back in AF. As I am asymptomatic, I have no way of knowing how long I was in NSR.The cardiologist decided he couldn't do any more for me and that was the last consultation I had. I was also taking bisoprolol and apixaban and still am. I remain asymptomatic.

SweetMelody2 profile image
SweetMelody2 in reply toBrotherThomas

My understanding is that asymptomatic afib is just as risky for stroke and injury to the heart as symptomatic afib. But I’m just a layperson

A beta blocker and an anticoagulant, such as you are on, are the normal cardiologist-prescribed protocol for afib. I did both for several years amid two ablations and nine cardioversions. The afib stubbornly returned and was not controlled by drugs without unsupportable side effects.

Symptomatic or asymptomatic, wouldn’t a consultation with an electrophysiologist be informative about your options? My EP offered options and solutions that my drug-oriented cardiologists did not mention. My EP got me free of the afib circus of drugs, CV’s, ablations, etc., by offering a pacemaker as a solution. I love my pacemaker. I love being done with afib and afib drugs.

Good wishes!

BrotherThomas profile image
BrotherThomas in reply toSweetMelody2

I had a consultation with an EP and he said that I wasn't suitable for anything he could do. The only option I have is that I can go back to them if I become symptomatic.

Happy New Year!

SweetMelody2 profile image
SweetMelody2 in reply toBrotherThomas

Happy New Year! May it be a good one.

Gowers profile image
Gowers in reply toSweetMelody2

seeing these posts regarding Amiodarone and Pacemakers is very helpful. Amiodarone definitely stopped the AF and reduced the ectopic and bigeminy. But is giving me the tremor in hands feet and knees when I need to put any weight on them to do things. I was told it is the IV drug they usually use when folk go to A&E with AF. reading the positive replies about pacemakers has been a great help in making a decision about getting a pacemaker fitted. Thank you

SweetMelody2 profile image
SweetMelody2 in reply toGowers

Amiodarone stops afib. So? Then what? It doesn’t “fix” the cells that transmit errant electrical signals; it just numbs them, slows the nerve impulses to the atria (and every other cell in one’s body). It’s supposed to be used only as “a last resort” because it’s such a powerful drug with such serious side effects. But it’s just too handy, too effective—so cardiologists, including mine, can’t resist prescribing it way before it is a “last resort.” I think it is used way too liberally.

My first prescription for amiodarone turned out to be proarrthymic; it CAUSED a sudden jump in my HR that never subsided until my first ablation. My cardiologist took me off it within two weeks, but the afib/atrial tachycardia remained. The research literature does include the information that amiodarone can be proarrhythmic. I swore I’d never take it again But….

I agreed to take it a second time, a couple of years later, when a second ablation, this time for for mild atypical atrial flutter, PRECIPITATED a horrendous episode of afib (which I did not have prior to the procedure, just flutter). A CV in an ER within 36 hours of the ablation failed—largely, I believe, because the attending didn’t know what he was doing and didn’t listen to me.

Anyway, with a failed ablation and failed CV, I didn’t have much choice but to try amiodarone. It converted me, not into NSR but into bradycardia, down from 140-160bpm, in 48 hours, to the 40’s and 30’s. Awful. This began 6 miserable weeks until I lobbied hard, with research studies to support me, to get off it. I felt like a zombie and started noticing odd side effects, like lurching when I walked. That was new, as was tingling in my hands.

I appreciate your concerns and cautions regarding amiodarone. Very wise. It’s a dangerous drug, in my estimation, with unsupportable side effects.

Given my experience, I hope you can understand why I turned to a pacemaker as a solution to this awful roulette wheel I was on of drugs, CV’s, ablations, afib, aflutter, tachycardia, bradycardia, ER visits, etc. I just wish I’d gotten the pacemaker sooner.

Gowers profile image
Gowers in reply toSweetMelody2

Interesting that you mention lurching when you walk- that's just how I am some days it's as if my body wants to forge ahead without me! It's a good description - the leaflet mentions balance issues I thought it was just me. What was the recovery like after pacemaker fitting I imagine it takes a bit of getting used to

SweetMelody2 profile image
SweetMelody2 in reply toGowers

I’m still in the process of going into the device clinic once a month for the settings to be adjusted. We started at 85bpm, then 80, 75. Now we’re at 70bpm. I’m still experiencing more breathlessness than I expected, so we’re checking out that adjustment. The pacemaker has a sensor that tells it when the heart needs to beat faster due to exertion—and get enough blood to the lungs and brain and muscles. It’s a process of fine-tuning. But these appointments are quick, easy, noninvasive, painless, and actually interesting.

Other than that, I don’t even notice it’s there, unless my cat decides she wants to snuggle right on top of it when I’m resting and I have to rearrange her. Probably wouldn’t need to, but I do. I also have to remember not to rest my iPhone on my chest when lying down. Phone needs to be 6 inches away.

Honestly, I don’t notice it anymore. The first month, yes…but after that it is just another part of me as I go through my day. The first month requires caution in certain movements. Not a big deal.

I got my normal energy for daily living back within a month or sooner. I’m not a ball of fire at 83, but I can now ease through my day enjoyably without that dreadful afib and/or drug fatigue. I got my life back, essentially. My normal, everyday life. That’s all I wanted.

I just couldn’t do the afib roller coaster anymore. I needed a SOLUTION and I found it. I had to advocate for a pacemaker proactively. No one came to me and said,”Gee, you’ve been having a tough haul. Let’s fix that with a pacemaker.” Rather, I said “I want a SOLUTION. Either we try one last ablation or go for a pacemaker. I vote for a pacemaker. Two ablations have failed; why would we think a third would succeed?” I could well still be on drugs if I hadn’t flat-out taken drug therapy off the table. My EP sided with my preference for a pacemaker. Right decision on both our parts.

I feel now that a pacemaker does not need to be seen as the last resort. It actually fixes how an afib heart functions—which is the goal of all treatments. I don’t see the need for trying this, that and everything in between before doing something that will simply make afib irrelevant and allow people to get on with their normal lives. Maybe someday that will change. Ablations used to be put off much longer than they are now. Maybe the same treatment change will happen with pacemakers.

SweetMelody2 profile image
SweetMelody2 in reply toGowers

I should have noted that the lurching and unsteadiness issues were securely related to the amiodarone, in my mind at least.

Gowers profile image
Gowers in reply toSweetMelody2

Have the lurching/balance issues resolved now you're off Amiodarone? Like you I dread the thought of af returning. The 4 ablations didn't work for me. Your replies are very much appreciated

Jajarunner profile image
Jajarunner

I was on dronedarone but it didn't work. Amiodarone works like a charm,been on it nearly two years except for a month when I had my fourth ablation. Dreading coming off it to see if ablation has worked tbhYou need blood tests every six months and a chest x-ray too.

Gowers profile image
Gowers in reply toJajarunner

I had 4 ablations and about 6 conversions and none of them worked long term. Neither did beta blockers and I've tried them nearly all! Neither did flecainide digoxin zemtard. I wasn't put on amiodarone after my last ablation until .. I was diagnosed with bigeminy after treadmill test showed it up and other irregular beats. Interesting that you have been given it straight after last ablation.

Jajarunner profile image
Jajarunner in reply toGowers

I was on flecainide then after third ablation failed dronedarone, but only amiodarone works. But was told I'm too young to be on it long term hence fourth ablation. Which doesn't seem to have worked but fingers crossed 🤞🤞🤞🤞🤞

Jishuang44 profile image
Jishuang44

I’ve been on Amiadarone for close to a year. In my case it is causing hypothyroidism, reduction in kidney function, problems with sunburn even when wearing high factor sun lotion, and corneal deposits. I’ve been told I could try coming off it and doubling my beta blockers as I have an ICD fitted, but it’s seen as a bit risky as ICD’s aren’t 100% effective . I’ve been stuck in a state of indecision for the past 2 months. Good luck with your decision.

Gowers profile image
Gowers in reply toJishuang44

Sorry to hear about your problems with it - my symptoms started within 6 weeks of being on it though I didn't recognise the tremor as being the cause until reading the leaflet instructions again and it being confirmed by my cardio nurse

jimmygea profile image
jimmygea

I was told that my kidney function is low and possibly hypothyroidism as have lost weight too. Thankfully it’s winter so the sun hasn’t been an issue, but looking forward to the summertime that might be a different story. I definitely don’t want to stay on the Amiederone long term, so hope that the ablation works! 🤞🏽if not might be worth trying something less toxic and see how that goes, trial and error!

paolina profile image
paolina

I'm in Italy and it was stressed that I should keep out of the sun, even months after coming off it I was aware of the need to be out of the sun. As someone else said not because of turning blue but the risk of sunburn etc, and also the corneal deposits, which thankfully dissappeared after coming off it. I can't remember what dose I was on but I had nightmares and a few more side effects, luckily no thyroid or kidney damage. I don't think it would be advisable to go sunbathing until at least 6 months after stopping taking it.

Visigoth profile image
Visigoth

I’ve been on amiodarone for over three and a half years, originally on a loading dose, then on 200mg for about a year, and since then on 100mg daily. Personally I feel very well on it but I have the necessary 6-monthly blood tests etc to monitor thyroid, kidneys, liver etc. You do have to be very careful in the sun - I don’t keep out of it but I cover myself in factor 50 and wear a sun hat and sunglasses. It’s not that your skin turns blue - that’s a separate, rare risk - but that you burn easily. I found that out when I missed a bit in my coverage of sun cream! I have corneal deposits but they are of no consequence whatsoever. In my case, I dread the prospect of ever having to come off amiodarone given that it gave me back my quality of life.

Jajarunner profile image
Jajarunner in reply toVisigoth

I agree. Totally gave me my life back after three failed ablations in three years. Back on it after bad afib episode and emergency cardioversion while ablation heals.... 🤞🤞🤞🤞

kocoach profile image
kocoach

I've been on Amiodarone for about 6 years and with no problems except for a scare I had due to x ray but a c/t scan showed it was unfounded. Like you I am on 200mg daily and apixaban 5mg twice daily plus a lot of other medications. If you'll research Amiodarone (studies and trials) you'll see that the low dosage you're taking is relatively safe, it's the higher doses that seems to cause some problems in certain people. Have a Great New Years.

Spin-off profile image
Spin-off

Hi Jimmygea. I’d say don’t worry. I’ve been taking 200mg Amiodarone for 2.5 years. I have 3 monthly blood tests and keep out of the sun and am not aware of any side effects. I know what a toxic drug it can be but after 4 ablations it is the only way to avoid persistent AF which is physically tolerable and always results in quick hospital admission. Because of other cardiac issues I am not eligible for pace and ablate or a pacemaker. So it’s Amiodarone for as long as I can tolerate it and that could be many years. I trust my EP. I trust the monitoring. And I’m in sinus rhythm. It’s all good. Obviously, I hope things work out for you and that you can come off the drug after the ablation but in the meantime try to relax.

Gowers profile image
Gowers in reply toSpin-off

I didn't know that cardiac issues would mean not being able to have a pacemaker. Like you I have been in sinus rhythm since being on it

RF260 profile image
RF260

Right, I'm going in...brought 56 x 200mg back from cardiology referral yesterday. Loading dose week 1=3 tablets a day, week 2=2 tablets a day, thereafter 1 tablet a day. Based on my maths the 56 will last me 5 weeks. Then I will get another 56 from GP to last me a further 8 weeks. So by end march I will have taken for 13 weeks and at some stage (hopefully late Jan) will have had cardioversion.I have scared myself witless reading some reviews but there are plenty of positive reviews amongst them. My persistent A Fib is very tiring so I'm "happy" to give them a go, who knows I maybe lucky side effects wise.

I've also been weaning off bisoprolol and hopefully took my last one tonight as the Amiodarone may lower heart rate so didn't want to be on the beta blocker too (as my resting heart rate does tend to be on the low side and it might identify if they have been contributing to my fatigue) cardiology have said just use them as a pill in pocket.

I'll post any good or bad outcomes..oh and I will get the requisite blood tests along the way.

Gowers profile image
Gowers in reply toRF260

I couldn't believe that a drug could stop the AF as Amiodarone has done, after 8 years of AF. In the beginning I was waiting for the AF to start! Wish I could stay on it but concerned how the side effects are affecting me now. Everyone is different & hopefully you will find it of great benefit. I know folk who have been on high dose of Bisoporal & never had a problem but, for me it just didn't work

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