Amiodarone : Does anyone have... - British Heart Fou...

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Amiodarone

Nakesero profile image
24 Replies

Does anyone have experience or advice on taking (or rejecting) Amiodarone? I was diagnosed with Afib in February and in preparation for Cardioversion my consultant has written requesting that I take Amiodarone “for a short period” but that I should be aware of “a low possibility of liver or thyroid side effects and pulmonary fibrosis” It sounds like one of those good news/ bad news quips; the good news is that we’ve addressed your Afib, the bad news is that you’ve acquired a potentially lethal lung condition. I gather that there are alternatives but they are not as effective (in treating Afib, not in giving pulmonary fibrosis!) I’m 69, male with Asthma and my pharmacist is unhappy with this proposal; does anyone have and experienced of the drug and am I being unduly alarmist?

Many thanks

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Nakesero
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24 Replies
Doodlegurl profile image
Doodlegurl

I can only tell you my experience on Amiodarone. I was put on it in Feb to treat AFib which it did and I haven’t suffered since. I saw a new Consultant who after going through my notes etc said he only wanted me on the drug for 6months. I should be finishing it at the end of this month. Yesterday I went for my regular blood test and at 6.45 last night had a call from my doctors saying my Thyroid was under active and he needed me to start on medication asap. I’ve severe HF and the symptoms of an under active thyroid are very similar so I didn’t question anything. My doctors hoping that when the amiodarone is out of my system that my thyroid will return to normal 🤞

Nakesero profile image
Nakesero in reply toDoodlegurl

Thanks for sharing your experiences, the replies have all been very helpful but also very mixed in terms of how people react to the drug and it’s possible side effects. Many thanks for taking the time to reply, much appreciated.

Annpatricia profile image
Annpatricia in reply toDoodlegurl

I have been in this situation twice before - thyroid function has returned to normal each time

Doodlegurl profile image
Doodlegurl in reply toAnnpatricia

Thank you. I can come off if now so hopefully my heart behaves itself😄 and because I’ve not had it long the thyroid corrects itself.

Hello. I had Amiodarone loading ( increasing strength) in preparation for Cardioversion. The drug did not cause me any issues at all although sadly the Cardioversion didn`t work. I am a 76 year old female with AF and severe Mitral Regurgitation.

Nakesero profile image
Nakesero in reply to

Many thanks for sharing your experiences, the responses have been quite mixed in terms of side effects. Thanks for taking the time to reply, much appreciated.

Visigoth profile image
Visigoth

I’ve been on amiodarone for 15 months and it’s been wonderful for me after feeling weird for the first two weeks. I was scared stiff to take it initially because of all the potential effects but I’m so glad I did. I have six-monthly blood tests and so far no problems, touch wood.

Nakesero profile image
Nakesero in reply toVisigoth

Many thanks for sharing your experiences and it seems to have worked really well in your case. Thanks for taking the time to reply, much appreciated.

Clairealou profile image
Clairealou

Hi Nakesero. I had it intravenously when I was first admitted to hospital with AF and then like you, had it in tablet format (increasing in dose age) for a few months. As Visigoth said, it does make you feel a bit strange for the first few weeks (hence why they build up the dosage gradually) but after that, it was fine. My cardio version was ok and after my heart surgery, I was weaned off it. I think they have to warn you of all of the possible side effects which do sound scary but are probably not that common. I didn’t have any Side effects from it

Nakesero profile image
Nakesero in reply toClairealou

Many thanks for sharing your experiences, reactions from people responding have been mixed as to it’s side effects. Thanks for taking the time to reply, much appreciated.

NLGA profile image
NLGA

Hi I was diagnosed with AF in May by June I was worse with my heart racing shortness of breath I couldn’t even walk up two flights of stairs I was in beta blockers since May but was out on Amiodarine in June after two weeks I had no improvement but the last two weeks I have been able to sleep through the night and be a lot less breathless . I have CV on the 12th of August It’s improving my standard of life

Nakesero profile image
Nakesero in reply toNLGA

Many thanks for sharing your experience and I’m pleased that there seems to be some improvement. Thanks for taking the time to reply, much appreciated.

Becksagogo profile image
Becksagogo

The dreaded Amioderone. The very mention of it and I go cold because this drug ruined my life with its side effects. Whilst it is very effective you MUST research it because the side effects for some are horrendous. Listen to your Pharmacist and see what alternatives are on offer.

Nakesero profile image
Nakesero in reply toBecksagogo

Really sorry to hear of your experience and can only hope that things improve for you. Many thanks for taking the time to reply, much appreciated.

Becksagogo profile image
Becksagogo in reply toNakesero

Hindsight is a wonderful tool isn't it? The trouble is Amioderone does exactly what it is designed to do but some people can experience side effects. I wish there was a test that we could do which would tell us which of us would suffer these effects. One day maybe.Good luck to you whatever you choose.

Fullofheart profile image
Fullofheart

Also, like doodlegurl, was on it for about 5 or so months for a cardioversion...caused underactive thyroid....not reversible. Had to come off amiodarone, now on dronedarone.But, think I'm probably predisposed as my mother has underactive thyroid. They think I was prob on that path and the amiodarone expedited that. S*d's law, I didn't even have the cardioversion in the end (that particular one, had others)That said, it remains the only drug I've ever taken that stopped my AF (at least partially). Cardioversions and 2 ablations have failed to do that and I've had it 18 years.

Nakesero profile image
Nakesero in reply toFullofheart

Thanks for sharing your experiences and many thanks for taking the time to reply, much appreciated.

ChasNick profile image
ChasNick

Hi, I have been on Amidarone for the past 4 weeks after to visits to A & E with Ventricular Tachycardia. No side effets.

Nakesero profile image
Nakesero in reply toChasNick

Many thanks for taking the time to reply, much appreciated.

Annpatricia profile image
Annpatricia in reply toChasNick

Everyone has their own reaction to this drug. I am now taking it for the third time. I have had two ablations and several cardioversions. On both previous occasions I have happily tolerated it for about 4 to 5 months and it has worked to maintain normal rhythm but has then impacted my thyroid. It’s important to have regular blood tests to check your thyroid function.

bikerider2022 profile image
bikerider2022

I was put on Amiodarone in Oct last year after an AF episode. Still on it now. No AF since and feel fine. I was warned about my skin going grey, so have been 'bathing' in factor 50 when I go outside. In my head that's a small price to pay for having no more (fingers crossed) AF episodes and no need for AF ablation.

seniorita profile image
seniorita

I haven't been offered amioderone but the cardiologist wants me to take dronederone. I've been weighing up the pros and cons of that. So far as I can tell he is looking at it long term as I don't need a cardioversion. From what I've found out he skipped over quite a lot of salient points. Good luck with your decision.

confused71 profile image
confused71

Hi I am in a similar position I was prescribed this drug yesterday --to be honest I am terrified of taking it I have atrial fibrilation and am waiting to have a cardioversion .I have stage 2 Nash liver disease and i am scared these tablets will harm my liver even more .

Nakesero profile image
Nakesero in reply toconfused71

Hi,

Thanks for the contact, I can only speak from my experience. When I was first prescribed Amiodarone my local pharmacist phoned up and said words along the lines of “wow, are you really sure about this, do you know what sides effects it could have?” This did not help my self confidence and the more I read about it, the more concerned I became. However, I thought that if I did not take it the Cardiologists would not move forward to Cardioversion or ablation so with great reluctance and trepidation I started it on 2nd Oct.

Mid Oct I had a cardiology appointment where the ECG showed that I was in sinus rhythm; I knew that I felt much, much active and motivated and Amiodarone had worked really well. Shortly after that I had a pre -op assessment for Cardioversion and because I was still in sinus it was cancelled - no point doing a procedure to put you in sinus rhythm when you are already there. I am still in sinus and now have a pre op at the end of this month for an ablation. Had it not been for Amiodarone I would not have been out of Afib for the last few months, nor would I have felt as good and there would be no way I would be down for ablation so quickly. It can have very serious side effects and the Cardiologists want me on it for as short a time as possible and so far blood tests have been fine.

That is my experience, I don’t have liver complications so cannot comment on that but presumably whoever prescribed Amiodarone would be aware of your medical history. I was petrified to take it but it has worked well on my Afib, good luck with taking it, I fully understand your concerns, and good luck in your road to recovery.

Best wishes

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