AF Association
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Stopping Amiodarone

Hi. I want to stop taking this drug. I live in the UK and went to see my GP, she rang the cardiologist who said it's normal to feel ill on this drug and I should continue to take it after my successful cardioversion 6 weeks ago.

I convinced it the Amiodarone that's causing my fatigue and breathlessness

I also get lightheaded occasional.

This is my 3rd cardioversion, 1st lasted 8 years, 2nd 3 months, I felt really well after both, but this time I feel dreadful most of the time, the only difference from the two previous occasions is the Amiodarone.

To be frank I never wanted to go on the Amiodarone in the first place as I knew of its potential toxicity.

I've read it's ok to stop and I'm very tempted to do so.

Thanks, I just needed to get this off my chest.

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I certainly don't blame you for the way you feel about taking Amiodarone. I took it for a while and although it didn't make me feel ill, it damaged my thyroid and I'll now have to take medication for that for life.

I find it quite shocking that you have been told by your cardiologist to continue taking this tablet when you feel it's making you ill. Honestly, it makes me want to swear! I wonder what they would do if it was making them feel ill!!

Hope you soon feel better.

Jean

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I agree, Also I( understand that Amiodarone have a very long half life and they had me on it for four months, did my thyroid in and have meds for life for that now. But because of long half life you can just stop it. I can't fathom why they have put you on this drug and why they continue to prescribe it. Hope this is of some help

Norm

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Thank you

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Hi jean,

In same boat as you Been on Amiodarone for over 2 years and cardiologist wont let me come off it, even though i've got hyperthyroid now and take pills for that,had ablation and think i'm in normal rhythm now but got to have Ablation for Atrial flutter, daredant come off Amiodarone just in case go back in to AF. not sure which is worse for the body having AF or the side affects of Amiodarone

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Certainly agree with your last sentence Higgy.

Jean

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From your previous posts, I believe you said you were on Amiodarone for a year. What was the strength? Granted, we all react differently, I am trying to figure out an average length of time and strength for the thyroid to get messed up. This is my ninth month on it now at 200 mg.

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Sorry, it was around 5-6 years ago that I took them and I really can't remember what strength they were. Although at the time I didn't have any side effects at all, they didn't keep my heart AF free.

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For once :) let me try to see things from the viewpoint of a cardiologist. They want you to stay in NSR. There is some evidence [I would have to dig to find it] that Amiodarone before and after cardioversion helps to maintain the NSR. There is similar evidence for Flecainide, but Amiodarone comes top.

But, there are side effects of any drug. Some you can live with [patient choice] and some are plain dangerous. The two big ones are thyroid problems, and lung problems. That is why, before starting AmIodarone you should have had thyroid levels checked, and do lung function tests, x-ray etc. The British National Formulary, the drugs book widely used in UK and I think accessible online, says that thyroid tests should be done every six months. Experience here and personal experience says every three months.

There is a well known tendency of some doctors to downgrade the importance of side effects, and to attempt to cope with them if and when they arise.

Twice I have been in your position: balancing the benefit of Amiodarone ie staying in NSR against its horrendous but rare risks. The first time I unilaterally stopped it after four months. I stopped totally since there is no danger in doing that. When my heart started troubling me I started a low dose of Flecainide. The danger point is often when you have accumulated a total of 30g of Amiodarone. The second time I had the courage to bargain hard. My thyroid had changed after only 2 months.

Ultimately it is your choice of the balance of risk against gain, and it is the job of the doctor to help you make a reasonable decision. Do ask about safer alternatives.

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Thanks. I'm convinced Amiodarone is causing me harm and having researched so much evidence that supports my symptoms as being drug related.

I guess its for me to decide.

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What was the dosage when your thyroid had changed after only two months , second time round?

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Not quite sure without looking. It was less than 15g, possibly as low as 10g. The thyroid went from normal to limits of normal. I stopped just in time.

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On Dec. 22, 2017 my thyroid was still fine with a TSH reading of 2.4 mU/L which according to my blood test results the range can be 0.32 - 5.05 mU/L. And, I had been on Amiodarone since Nov.20, 2017. ( In February, I could skip weekends)

Since Dec. 22, I have taken 66 tablets at 200 mg which by my calculation, if I'm doing it correctly, is 13.2 mg. as of March 10, 2016.

Since I have gone back and forth in sinus rhythm after my second ablation, my EP upped my dosage to 400 mg daily for two weeks starting March 7. The side effect of the eye halo increased enough that I emailed my EP that I didn't think I should continue in that vein and when I could be off it.

I did a rough calculation of how much Amiodarone is in my body since Nov. 20, 2017 and from memory I think it is 54 g, certainly beyond the 30 g.

So, I am more than concerned that I have wrecked my thyroid but I suppose that I won't definitely know until I get another blood test.

My EP is top in the field so I must have a very difficult body if I am prescribed so much Amiodarone.

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Important. It is easy for doctors and patients to miss this. The body self corrects. Therefore, when Amiodarone is stopped and thyroid is upset, this does NOT automatically mean that treatment is needed. The treatment itself can make things worse due to over-correction! Be slow to treat. ncbi.nlm.nih.gov/pmc/articl...

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Thank you. I will keep this in mind, especially when my thyroid is tested again.

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You have a choice - it’s your body - you can refuse any treatment but please do so after considering all the information and weighing up benefit:risks.

Best wishes

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I was on the drug for four years. Far too long really but it did do its job and I was symptom free as far as AF was concerned. However as is often the case I developed hypothyroid problems which meant another drug to counteract that and then eventually lung problems. At this point, with my cardiologists agreement, I stopped taking the amioderone. That was two years ago and I have felt pretty good since and had few AF symptoms. I'm 83 now.

Good luck.

EricW.

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Hi, EricW, during the 4 years you were symptom free were you in persistent Af or were you in sinus? Currently, do you mean you have few AF episodes but are mainly in sinus?

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During those 4 years I was fine. Plenty of exercise and generally feeling well. I was in sinus rythem all of the time with a steady resting pulse of 60. To fully rid myself of the drug took about 6 months. After this time I noticed an increase in pulse rate to about 70 but still felt OK. Now here is the strange bit. I have a dual chamber pacemaker which is checked every 6 months. The last checkup showed that I am in AF for 70% of the time in other words 'persistent AF'. However I am not aware of it and still feel fine. The consultant is not concerned and is happy to leave things as they are. And so am I.

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I am on Amiodoryn, since having a pacemaker I was AF free for four years, this last Xmas I went into Af, I had reduced my Amiodoryn on my own violation. To get me back into sinus mode, I was given 600 mg a day, after 3 days I was back in sinus rhythm. I am now on 200 mg per day. My Dr checks my thyroid every 6 months

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I was on it, had loads of side effects, such as brain fog, shortness of breath , sunburn if i stood too close to a window, blurred vision and it damaged my thyroid. Luckily my thyroid function came back to normal limits.

It does have a very long half life, and only gets out of your system when cells are replaced and is not flushed out by the kidneys like other drugs. Half life can be up to 142 days in some people!

There is no doubt that it kept me in NSR following my cardioversion but I'm not sure it was worth the side effects.

I have refused to have it twice in A+E whan they wanted to give it to me IV, never again

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How long and what strength were you on Amiodarone after cardioversion to have your thyroid damaged?

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5 months in total, 2 months before my first cardioversion and 3 months after.

Was on the normal 600mg a day loading dose then 200mg a day maintenance dose

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Hi Chridh,

I hope that now you have got it off your chest, you do feel a bit better. I have never taken Amiodarone and to be honest, I hope I never have to.

I can understand the strength of views expressed, but I also think it is dangerous if we try to influence you away from taking the advice of your doctor, although it seem sensible to make you aware of alternatives which may be worth considering. I believe one of the volunteers has posted about a similar experience to yours so he may have something useful to add if he sees your post. ILowe’s post makes some very valid points. As I say, I’m not able to add any useful comments, but I hope you feel better soon....

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Thank you for taking the time to reply. Your comments are very useful.

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I took it one month and it caused shortness of breath, ears ringing, neck sore like the mumps, just felt ill. I stopped it, but told my EP, he agreed. I had refused it twice. I now take flecainide low dose, 50 mg x 2 a day

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My own doctor supported my view to stop taking the drug, but she was obviously extremely nervous to make the decision herself, so she rang a duty cardiologist at a local hospital.

He said I should continue to take it, normally he would prescribe Amiodarone for 3 to 6 months after a cardioversion, which of course I had a few months ago.

But and it's a big but, I didn't want to take it in the first place, despite having the drug at home I never started taking it for over a week later. I'm convinced its poisoning my system and I know my own doctor shared that view butut was swayed by her phone call to the cardioversion who said I should continue with the drug.

I'm still undecided what I should do.

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Lets take the 6 months at 200 mg. per day (6 x 30 days x 200 mg) =36,000 mg which equals (36,000 ./. 1000 ) = 36 grams which is 6 grams beyond the 30 g danger point (which two posts have pointed out.) It is remarkable that a cardiologist would prescribe a drug beyond the accumulative 30 gram point.

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Why not ask your doctor to do chest and thyroid tests now, and to consider a change to a different drug if they are not completely clear? That gives her action she can take, and you know that you may be able to stop it soon, so it is a 'win-win' situation for both of you, and should move things forward . . .

( I had thyroid problems within two months)

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I was told to take it for three months after each of my two Cardioversions. I did the first time but stopped it after about a month after the second one due to its side effects without asking permission.

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What side effects did you get?

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The first time (2012) after my aortic valve replacement I developed a tremor in my hands and an unsteadiness when getting up or starting to walk. I also had floaters in my eyes followed by deposits on my corneas. Also when in hospital I developed tendonitis that I later needed physio for.

Same the second (2014) time but with severe disequilibrium causing unsteadiness when making turning movements , having told hold on to the wall in the shower with one hand and wash with the other. Cooking became a danger when lifting a kettle or saucepan.

After stopping it I developed a numbness in my lower left leg that initially I blamed on Bisoprolol that I was then taking but later thought it might be an after effect of the amiodarone. A neurologist said idiopathic neuropathy but another and possible blame could be put on the antibiotics Cipro or fluoroquinolones that I had been prescribed several times including at the time of my aortic valve replacement. Several neurologists later I am still without an answer and even CMT has been suggested although genetic blood tests and electrical conduction tests did not suggest it. The numbness caused a change of gait that has affected my lower back and I’m unable to walk unaided outside and use a wheelchair a lot of the time. Back specialists and a neurosurgeon see nothing to treat on my CT or MRI scans. Combinations of drugs make any diagnosis practically impossible.

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Thank you for your comments, they make very interesting reading

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Very interesting reading. Thank you for sharing with me.

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Interesting for you but as consultant says frustrating for me:-)

Neurologists say see neurosurgeon. Neurosurgeons and orthopaedic consultants say see neurologist

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Normal to feel ill on a medicine?!!! I think you need to question this,perhaps a second opinion?

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UPDATE

Well, I decided rightly or wrongly to stop taking Amiodarone 2 days ago.

I have to report almost immediately the leg and arm pain has gone.

Fatigue is greatly reduced as is the breathlessness.

This is on just 2 missed doses of 200mg per dose.

I find it absolutely incredible to feel so different after only 48 hours.

I'm about to telephone my doctor and ask why I feel considerably better than 48 hours ago, I would like an explanation as to why being off the Amiodarone has improved my general well being.

Regards

Chris

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Congratulations. I am glad you are feeling better straight away.

I have a cautionary tale. My doctor put me on 400mg in one single dose, five days a week. The idea was to hit the system, then pause the hits. I did this for two weeks. I noticed that my heart was better behaved after the weekend! So I tried 400mg alternate days. I noticed the days off were better. That also justified stopping. This is not the normal approach to how it works. It is a French approach.

Then came the question of what to replace it. Discuss this with your doctor because a dose reduction is needed for both flecainide and bisoprolol.

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I'm obviously nervous having stopped taking it, but frankly with the reduction in really horrid side effects almost immediately I don't think I need a medical qualification to determine the Amiodarone was indeed the culprit of me feeling really ill.

Cessation of the arm and leg pain and muscle fatigue is reassuring, I can now climb my house stairs without having to rest halfway, so again I'm convinced it was the Amiodarone.

My doctor had already reduced my Bisoprolol from 10mg to 7.5mg

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After a successful ablation I asked my ep" what about the pills"? Throw them in the bin he said. I said "My cardiologist said he would like me to stay on them for a few months". OK, he said. So I did, my heartbeat stabilised and I came off amiodarone.

In my opinion this is a very nasty, dirty drug, with dangerous side affects that stay in your system for a very long time and the half life of it means that it takes anything up to a year to clear completely ,( a half then a quarter, then an eighth, then a sixteenth and so on).

However it is usually effective, there are no viable alternatives and that is the sole reason for prescribing it as a short term fix . You should have an agreed care plan with your GP and your consultant which involves regular tests for various functions every six months.

my afib returned after a cruise half way around the world (be careful what you wish for) but it is relatively mild and I can live with it.

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