Amiodarone: Hi A Fibbers... I had my... - Atrial Fibrillati...

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Amiodarone

23 Replies

Hi A Fibbers...

I had my failed CV follow up at the John Radcliffe today. It was with a different cardiologist which was disappointing.

He was of the opinion that as I had felt so much better during my AF free 5 days, that a course of Amiodarone and another CV could be the answer to my PAF before looking at ablation.

Initially I thought that this sounded like a good idea but I have been looking at some of the side effects of this drug and they look awful.Nearly as bad as the AF.

Has anyone got first hand experience of Amiodarone please? Even if it's a horror story I would like to hear it.

Many thanks

SJ.

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23 Replies
BobD profile image
BobDVolunteer

I had to have a drip of the stuff after my first (failed) ablation which wasn;t very nice but know of people who have been on it for ages. OK you need to avoid sunlight but this is England in September. you need to keep an eye on eyes, lungs and thyroid but if a short course works for you why not?

B

in reply to BobD

Thanks BobD

He was suggesting tablet form for about a month then the CV.....It's got to be worth a try and if the side effects are too bad at least we can stop and rethink it.

Beancounter profile image
BeancounterVolunteer

Hi Scrumpyjack

I was in a very similar position to you, other than my CV had failed almost entirely, and they wanted to try and bring me back into rhythm so in January this year I started Amiodarone for 3 months, and then had another CV at the end. It put

me back into rhythm for around 6-8 hours and I couldn't tell the difference.

But if you can, then I do think this is a good idea, the side effects are mainly long term (I say mainly as a very few react almost immediately to it) and to take for a shortish period and then another CV is a perfectly valid plan, and may I say a sensible one.

However be prepared that if this works, and you go back into NSR for any length of time, you might need to be ablated, but the chances of success will be higher if they know an amiodarone induced CV works.

Be well

Ian

in reply to Beancounter

Blimey Beancounter -- 6-8 hrs?--- Not even a day then.

I think I'm going to go for it...at least I can stop if the side effects are too bad.

Thanks

Rubley profile image
Rubley

Hi took amioderone for about 6 months having started it intravenously whilst in hospital following three ablations in a few weeks when nothing else seemed to work. This was sold to me as necessary and a last resort. It immediately made me ill but they slowed the IV down and got it in eventually, then on to tablets. I think the amioderone probably started my journey back to some normality so I was glad I had it but in the end the thought of the side effects made me extremely paranoid and I was convinced I had them all including affecting my sight. Now my left eye is nearly a 3.0 prescription when it used to be 0.5, albeit this might just be my age. I subsequently took a slightly less nasty drug called dronoderone which was the new thing a few years ago but I'm not sure that one is even available anymore. All I can say is take the EPs advice do your own research and try and do what you think is right for you. In my situation the drugs worked short term but never resolved my problems, I wish I'd had my AF ablation much earlier as my AF seemed to get progressively worse over time. Some people on here have really struggled with ablations but I didn't and I recover well afterwards ( I have a handy hole which makes access easier) so you can only try and do what's right for you. If I can be of any more help just ask. Hope this helps and good luck, keep well!

in reply to Rubley

Hi Rubley

Yeah, lots of side effects to look out for. I've already got poor sight in one eye so will play special attention.

At least I wont need to worry too much about the sun stroke LOL.

Thanks for the offer of help--you may regret that :-))

Thanks

SJ.

Mazza23 profile image
Mazza23

Mine is a horror story when I was rushed to hospital with CHF and a heart rate of 180 / 200 they gave me amiodarone I had an instant reaction to it in the form of LQT was touch go for a while then they tried several other drugs same result so did a CV with TOE this worked, but still spent 8days in CCU now I have bouts of AF and as I can't take a lot of the drugs they would normally give they want me to have an ablation

Mamamarilyn profile image
Mamamarilyn

I also had an Amiodarone drip which had to be discontinued as my arm swelled up. This was administered by a registrar while my usual cardio was on leave. When he heard of it he went berserk as he said that he never recommends this drug because of its short and long-term side-effects. Like all meds people can have different reactions...I know people who have been on it for a while and one who has suffered lung damage, so it's a lottery really! I certainly don't want anything to do with it again

BobD profile image
BobDVolunteer in reply to Mamamarilyn

That was the problem I had. Arm swelled up like Popeye the Sailor Man after a tin of spinach. Only a 24 hour drip but did at least stop my 220 bpm and BP of 210/170. I knew something was wrong when a DOCTOR was checking me every 20 minutes .Ha ha. Thought I was going to explode like Mr Creosote in the Monty Python sketch after a "waffer thin mint." Age showing. Sorry.

B

smee profile image
smee

I have been of Amiodarone for a month now with no side effects, and no Af attacks either.

in reply to smee

Hello smee

I have been in AF for a year. One CV which held for 5 days. Did Amiodarone stop your AF with no other treatment?

PeterWh profile image
PeterWh

Insist on a full set of blood tests first so there is a baseline - very key. Then a further set after a month and then a further set after three months.

I was due to be put onto Amiodarone for a month before my ablation and three months after to help the heart as my consultant EP strongly felt that it could help the heart with NSR on a SHORT term basis. However quite separately before starting (but after the prescription had been issued) I had a set of blood tests because my pharmacist believed I should have had them three months earlier because of taking simvastatin (and earlier having been on Apixaban). The test showed that my liver function was significantly (but not dangerously) out. However I received three or four calls from the surgery telling me to stop the Amiodarone immediately (they weren't aware I hadn't started because I didn't have the ablation date at that point). Initially it was voicemails and then they got through I was able to tell them I hadn't started - relief!!!

Sent the blood results to the hospital and my consultant decided that I definitely should not take Amiodarone and that the ablation should go ahead without taking it.

Gaygay45 profile image
Gaygay45

I have been on Amiodarone for three years and have yet to experience any side effects. Constant monitoring is necessary with 6 monthly blood tests. Care over exposure to sun, eye checks and aware of possible lung problem. It has not changed my life at all . I think a short course would have no such effects.

The wonderful thing is I have been free symptom free from my PAF. I am a very active 69 yr old going to the gym, playing tennis and hiking.

robboian profile image
robboian

I was also concerned about the potential side effects of amiodorone but decided that it was worth a try given that I could discontinue administration if any adverse effects emerged. Anyway took oral amiodorone for 6 months without any issues.

kakapo profile image
kakapo

The first time I had amiodarone was for an attempted chemical cardioversion but it was unsuccessful and I had to have an electrical cardioversion. The second time they tried amiodarone I went into anaphylactic shock within seconds and it really felt like I was dying. You asked for horror stories and that's my one..

Lizzo profile image
Lizzo

I was put on amiodarone tablets after I went back into AF a few months after CV, in an attempt to reduce the symptoms before my next CV. However, when I went in for the CV, they found that the amiodarone had brought me back into NSR, so I didn't need the CV. I was kept on amiodarone, with regular blood tests for liver function. It didn't give me any obvious side-effects, apart from the sun sensitivity, which was very noticeable. After several months, they took me off amiodarone, but 3 months later, the AF came back with a vengeance! So, back onto the amiodarone, and in for ablation! I stayed on amiodarone, but needed a second ablation 6 months later. That seems to have been successful...,... I stayed on amiodarone for a few months, but have been off it now for nearly 6 months without any further symptoms. I am still sun-sensitive to some extent, but otherwise feeling pretty well.

Sorry, this is a bit of an essay, but hope it helps! I think it serves to demonstrate that we are all different and react in different ways. Good luck!

PeterWh profile image
PeterWh

Amioderone appears to be one of those drugs that affects some very significantly and others very minimally except for a few things like sunlight. I was told that once you stop it takes 3 to 6 months to get out of your system.

-Tony- profile image
-Tony-

I was put on this drug after a unsuccessful CV 5 years ago, was on it for 6 months and it put me back in NSR, in January this year went back into AF after a bad bought of laberynthitus Went to Cardiologist and asked to be put back on amiodarone and within a week was back in nsr so very happy. My eyes are not as good as they were but had been deteriorating anyway.

Having read all the horror stories on this site will be happy to get off this drug when I see cardiologist this month. But will be happy to as to be put back on it should (when) the AF returns.

Bev999 profile image
Bev999

Hmm, does seem tohave variable effects.

I was on Amioderone prior to second ablation for about 3-4 months. It was very effective for my PAF but blood tests showed thyroid problems developing and a routine sight test showed deposits on my corneas which the student opthalmologists were brought in to see!

I was taken off it quickly due to iodine/thyroid issues.

Difficult to decide but I agree with need for blood monitoring and baseline if you do start it. Good luck

Bev

SNOWHAMMER profile image
SNOWHAMMER

Hi

I refused Amiodarone, because of the side effects, as a prelim to my CV, but at the pre-procedure, when you meet the anaesthetist, sign your life away etc., the arrhythmia nurse persuaded me that the 20% better chance of the heart holding a normal rhythm outweighed the side effects.

I was also assured I would only be on the drug for six months. One month before the CV and five months after it, so I agreed.

I had my CV on the morning of 17th August. The first “Zap” worked and my ticker is back in normal rhythm but a little slow!

I am counting the days until I finish my six-month course of Amiodarone but if it is helping me and my heart to remember the beat, then I would take it again!

PeterWh profile image
PeterWh in reply to SNOWHAMMER

I also only agreed to take it on a temporary basis though my consultant had wanted me to have it 1 month before and 3 months after my ablation. In the event (as you will see higher up this post) the use of Amiodarone was abandoned because of liver function issues caused by Simvastatin. Interesting to see if they want me to take it before / after my second ablation.

10gingercats profile image
10gingercats

I was rec. Amiodarone at The J. Radcliffe several years ago and refused it after doing a bit of investigation.Just as well for me as I was 'hatching' a nasty thyroid problem at the time that had not yet revealed itself.Amiod. and thyroid problems do not go well together..Who was/is, your consultant...if you feel like saying? None of this means you should not take it.But do a bit of 'digging' and note what people say here. I am on Verapamil and it works fine for me.I have permanent AF.

in reply to 10gingercats

Hi 10gingercats.......brilliant handle:-))

I've read a lot about Amiodarone, some good and some not so good.

I don't think I should name the cardiologist but he's an EP as well and well on top of the game.

I've got some time before I have to decide and if I go ahead I'll get base line checks done first.---

I won't name the cardiologist, he's an EP too and on top of his game :-)

Thanks for the input.

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