Amiodarone ?: I have AFib and after... - Atrial Fibrillati...

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Amiodarone ?

Ren912 profile image
39 Replies

I have AFib and after being on Metoprolol for about 10 months and AF free for 3 months I was just prescribed Amiodarone to replace the Metoprolol. I've researched this drug and don't like what I've learned. Apparently it is potentially toxic to many organs. I think I'll go with the ablation instead. Any experiences with this drug. Haven't taken any yet.

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Ren912 profile image
Ren912
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39 Replies
Mrspat profile image
Mrspat

Was on it for 7 years, a time span not recommended now. Ruined my thyroid permanently and damaged my corneas, which was reversed when I stopped the drug. Also made my hair fall out. Worked well at controlling AF.

Ren912 profile image
Ren912 in reply to Mrspat

Seems to me that the cure is worse than the disease. That is why I'm leery about taking it.

BobD profile image
BobDVolunteer

It should be the drug of last report by ESC protocol. Often used short term (maybe six months) to assist cardioversion but not nice long term due to possible lung, thyroid and eye problems not to mention photosensitivity.

Who is treating you?

PeterWh profile image
PeterWh

The EP MAY ask you to take amioderone before and after ablation to assist the heart in staying in NSR (typically 1 + 3).

I was on it for 6 months, killed my thyroid, got sunburn inside the house wearing factor 50 in February because I sat close to a window.

Felt absolutely awful on it.

Never again

jeanjeannie50 profile image
jeanjeannie50

If you were AF free for 3 months on Metoprolol I wonder why they now want to put you on Amiodarone? I took it on and off for a few years and it didn't do a lot for me and affected my thyroid function. I now take Flecainide, which has helped my heart rate more than any other drug. I've had three unsuccessful ablations.

Jean

tony85 profile image
tony85 in reply to jeanjeannie50

If you are free from AF for 3 months, I can't understand why you have to take amiodarone. It is a last resort drug when nothing else helps. It has very bad side effects. It nearly killed me.

I would strongly suggest you get another opinion

offtherecord profile image
offtherecord

Off the record.

I have been prescribed Amioderone prior to a cardioversion but it is sitting here unused. I read that it can affect corneas, and as I have a corneal graft I am very wary. I may in time need another in my other eye. I have contacted my opthalamic surgeon and await his advice. Has anyone had a similar situation?

I am so unhappy about all this intervention.

CDreamer profile image
CDreamer in reply to offtherecord

You have the right to refuse any treatment offered on NHS, never makes you popular with the consultants but I think in your position I would refuse it, as I did several drugs offered me for AF.

There are always alternatives so go back to your consultant and explain - many do not take into consideration other health issues when prescribing as we have a very specialized system.

offtherecord profile image
offtherecord in reply to CDreamer

Offtherecord.

Thanks for that. As it is over a month since I saw the cardiologist and his letter to the GP and myself has not yet arrived I am already getting very bogged down with all of this, I don't even know the name of the cardiologist until the letter arrives!

Thankfully it seems my symptoms, discovered by chance and not felt, seem to be mild thus far.

CDreamer profile image
CDreamer in reply to offtherecord

I hope you are seeing an EP (Electrophysiologist) and not a cardiologist? If not, insist on being referred to one.

Your reply worries me somewhat if your cardiologist is trying Amiodarone as a first line treatment!

offtherecord profile image
offtherecord in reply to CDreamer

Off the record

Forgive my ignorance cdreamer, but is the electrophysiologist the chap who did the ultrasound scan of my heart or a different specialist? I am realising how little real inforation I have been given, the term 'holistic' certainly does not apply.

PeterWh profile image
PeterWh in reply to offtherecord

No!!!

An Electrophysiologist (EP) is a consultant who has specialised in arrhythmia (ie the electrics of the heart). Nearly all of them are Cardiologists who have specialised.

The person who does the ultrasounds is generally what was known as a radiographer. However they again have specialised.

offtherecord profile image
offtherecord in reply to PeterWh

Offtherecord

Thank you Peter Wh

So confusing, the 'radiographer' who did my ultrasound /echocardio graph or gram? certainly gave me his different title but I failed to fully register it I have no idea about the chap in Cardiology in a different hospital until I receive his letter. There is a great deal to consider before I take any medication.

CDreamer profile image
CDreamer in reply to offtherecord

Take your time, go to the AF website and look at the information, lots of info on terminology, a list of EPs and leaflets on drug treatments as well as other advice.

It takes time to absorb and come back and ask questions here and we will help and support. Best wishes CD

PS Cardiologists are more the plumbers of the heart.

offtherecord profile image
offtherecord in reply to CDreamer

Offtherecord

I shall. Very thankful that I was referred to this forum by the AFA.

Boombiddy profile image
Boombiddy

A relative was also was given Amiodarone.

The doc had ignored that it should only be given short term, so he was taking it for years rather than months.

It ruined his health. Constant breathing difficulties, effectively COPD. There was no warning about it then, there is now. Sorry it's not nice news.

clanmags profile image
clanmags

I have been on Amiodarone for three weeks now and have another two weeks before my appointment at the cardiology unit where I am down for a cardioversion. The only problem is my INR levels have become unstable since taking Amiodarone and I won't have had a stable reading for 3 weeks before the intended cardioversion! Amiodarone has definitely stabilised my heart rate....down to 54 and feels regular. What I'm wondering is, does Flacainide work as well as the Amiodarone that I really don't like taking? Does anyone know how long I can take Amiodarone without having the damaging side affects? If I stop taking Amiodarone, will my heart rate go back to its higher rate?

seasider18 profile image
seasider18 in reply to clanmags

My INR practically doubled in ten days after being prescribed amiodarone when already taking warfarin. No one could tell me why so I did my own research.

Anticoagulants:

Potentiation of warfarin-type (CYP2C9 and CYP3A4 substrate) anticoagulant response is almost always seen in patients receiving amiodarone and can result in serious or fatal bleeding. Since the concomitant administration of warfarin with amiodarone increases the prothrombin time by 100% after 3 to 4 days, the dose of the anticoagulant should be reduced by one-third to one-half, and prothrombin times should be monitored closely.

Some drugs/substances are known to accelerate the metabolism of amiodarone by stimulating the synthesis of CYP3A4 (enzyme induction). This may lead to low amiodarone serum levels and potential decrease in efficacy.

PhyllisK profile image
PhyllisK in reply to seasider18

Hi Seasider, I have been on Amiodarone for about 8 weeks and find that I have a 'tickly cough' and general feeling of being unwell. I am due to have a cardioversion and the medication was prescribed to support the NSR but I am having difficulty tolerating the drug.

The thing that I found interesting in your post was the fluctuation of your Wafarin INR. Over the last three/four weeks my INR rate has risen to 5.5, it was in the 2.5/ 3.0 range. We have an allotment and I thought I might have been overdoing the 'greens' but I haven't had this problem before with food.

I contacted the Arrhythmia Nurse this morning about my blessed cough but also mentioned the fluctuation of my INR rate.

Thank you, I hope this will have helped with any changes in medication that the EP may decide is appropriate for my AF.

Good luck on your AF journey.

seasider18 profile image
seasider18 in reply to PhyllisK

I take it that like me you were taking Warfarin before being prescribed Amiodarone. Your comment to the Arrhythmia nurse should have prompted an immediate reaction.

Obviously as in my case whoever checks your INR does not know that you need your Warfarin reduced. When I gave my GP a print out of my findings and it was news to him as the wording in BNF is not very specific. I then went to my local pharmacy and asked why they had not warned me about the interaction. The pharmacist said ' I thought everyone knew that and would have taken it into account'

The patient should not be the last line of defence.

PhyllisK profile image
PhyllisK in reply to seasider18

Thank you again for taking the time to respond to my post. The Arrhythmia nurse will be having a chat with Dr Osman (EP) about a possible change of medication and I would think that the Wafarin fluctuation might have a bearing on his decision.

Thank you again, I hate having AF but the HealthUnlocked forum is so precious and makes life easier.

Phyl

seasider18 profile image
seasider18 in reply to PhyllisK

Have double helping of spinach tonight.

Dr Osman in Coventry?

PhyllisK profile image
PhyllisK in reply to seasider18

Wafarin levels down to 2.9 (phew!) Yes it is Dr Osman, Coventry. It's a super team,

seasider18 profile image
seasider18 in reply to PhyllisK

Good news. You must have eaten a lot of your Greens!

PhyllisK profile image
PhyllisK in reply to seasider18

Not down to me, must give anti-coagulation clinic the credit.

seasider18 profile image
seasider18 in reply to PhyllisK

What did they do?

PhyllisK profile image
PhyllisK in reply to seasider18

Weekly blood tests and then Wafarin dosage adjusted accordingly. Hate the weekly blood tests but they are doing the job! Phyl.

PeterWh profile image
PeterWh

Also liver and kidney and possibly other blood tests before you start taking it and then 4 weeks later (if having an ablation at exactly 4 weeks then make it 3.5 weeks!!!).

Roseyuk profile image
Roseyuk

Was on Amioderone for to many years.. Unknowing it's serious side effects..

Until we returned to UK and my GP told me I should not have been on it so long, my thyroid was wrecked now on thyroxine for life .. Hair and nails affected.. Slight kidney damage.. Light and skin sensitivity..

Only one issue has resolved since quitting is my hair and nails.have improved.

Not up to me to say. But I would seek further advice Ren..

Good luck..😊

3killeens profile image
3killeens

Was on amiodrome for 2months ,the worse medication I ever took it has affected my eyes ,thyroid and kidneys ,i ended up in A&Eon a drip for hrs as I was so dehydrated,horrible horrible drug not quite over it yet , good luck !!!

Ren912 profile image
Ren912 in reply to 3killeens

This is why I'm asking for others experience with this toxic drug. I'm very suspicious of taking it. Thanks for the warning. I'm sorry you were affected this way.

goliath123 profile image
goliath123

Also when you stop taking it, it takes approx. 3 months to get it out of your system. I was on it for about 6 week after ablation and like most felt terrible and started having high kidney readings when having blood work done. Have been off of it now for less than a month and will be having more blood work done next week to see if there's a change in my kidney tests.

Ren912 profile image
Ren912

I have learned nothing good about it, and a lot of reasons not to take it. Thanks.

Emsysy profile image
Emsysy

It's a poison. It soaks every cell in the body. My thyroid was recked with this awful stuff.

However, it is supposedly the most effective drug for reducing ones heart rate to acceptable levels when in AFIB or A Flutter.

PeterWh profile image
PeterWh in reply to Emsysy

Does it alter rate - maybe a little but I don't know. Its main purpose is to stabilise rhythm.

clanmags profile image
clanmags

Yes, within 2 weeks of taking it, my heart rate went from 87 to 54 bpm and it is now (mostly) regular....in readiness for cardioversion in 11 days. If the cardioversion is put off because of my, now, unstable INR....I will refuse to take Amiodarone again. I'd rather have an irregular heart beat than take this drug. Surely there's another drug that works as well as Amiodarone to lower and regulate one's heart rate?

ultramarine profile image
ultramarine

Ren912. I was on Amiodarone for 9months, given to me in emergency, after a fairly big episode, with previous medications of Metoprolol and Sotalol. I decided after 5 months (and reading up on this medication,) I would not be taking it long term, but it took me 9 months to convince my Cardiologist and EP that my change of lifestyle and Fodmap diet including supplements, would give me a better chance of staying whole (as I had no other major heart or health problems) and the next time in emergency, told them I wanted to go back on Metoprolol to try again. This has worked for 9 months now, but is not holding as it used to. I broached the medication Amiodarone, when I last visited my EP and told him I would not be using it due to the serious problems connected with it, and he said that it could cause problems with some people but that I don't have any of these problems. I let him know I didn't want to take that risk anymore, and told him my lifestyle change has enabled me to overcome some of the AF/SVT episodes and I will be staying on Metoprolol until my surgery for ablation. Although there are risks associated with this surgery, I am choosing to go for an ablation rather than go back on Amiodarone.

CJDa profile image
CJDa

To give a different perspective. I took Amioderone for almost 2 years and it transformed my life by keeping my heart in normal rhythm most of the time. I was regularly tested for liver and thyroid function and experienced no side effects. Factor 50 worked for me although I was initially concerned about exposure to the sun - put a gazebo up in the garden!

I know it is a potent drug. Nothing else worked for me and I am very grateful it's available. I have been off it for 3 months now with no AF but they say it stays in your system. It's enabled me to make lifestyle changes, be active, lose weight so hopefully this combination is all helping.

I was initially very reluctant to take Amioderone, it took a while to be fully effective but I would take it again if needed.

Good luck with your treatment.

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