Ablation 4 maybe?: So, I'm in and out... - Atrial Fibrillati...

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Ablation 4 maybe?

Suzanne-Cheshire profile image

So, I'm in and out of AF. I've just picked up my first prescription for amiodarone. I have read some horror stories about this drug but my GP has handed me the prescription without worry. My Consultant has fully warned me of side effects. And I would rather amiodarone than my heart stop.

I am wondering if taking amiodarone will better prepare me for another ablation? Could it mean a better outcome than just bearing with the AF - on average 3.5 hours a day?

If anyone has any suggestions or similar experience please feel free to share...

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Suzanne-Cheshire profile image
Suzanne-Cheshire
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28 Replies
higgy52 profile image
higgy52

Its good drug for the heart,

but not for the rest of your body, so dont stay on it to long, there again not every one gets side affects,

good luck

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply tohiggy52

Thank you

seasider18 profile image
seasider18 in reply tohiggy52

" but not for the rest of your body, so don't stay on it to long, there again not every one gets side affects, "

Many are not noticed until harm has been done. It is supposed to be a drug of last resort but is still not prescribed in that way and is not supposed to be prescribed by GP's.

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply toseasider18

Thank you. I'm not sure I'm ready for the drug if last resort. Maybe just do little and rest when AF strikes. Confused!

seasider18 profile image
seasider18 in reply toSuzanne-Cheshire

Google 'history of amiodarone '

Kaz747 profile image
Kaz747

I had fast AF return quickly after ablation number 3 last September and had a lot of inflammation and a strong almost autoimmune response which put me back in hospital within 2 weeks. At that stage Digoxin was added to my drug regime and a few weeks later, when it was obvious that the drugs still couldn’t control things I was put on Amiodarone as well. My EP said it would only be for a few months. He wanted to give my heart a rest. The drug did slow my heart down but I was still in and out of AF even with the cocktail of Amiodarone, Digoxin and a Atenolol. I had a reaction with my skin (rashes), my lungs and my liver (an enzyme level went up from 30 to almost 200) so I was taken off it after 2 months which was January. I had ablation number 4 in March and have been pretty good since. In a recent blood test my liver was back to normal and everything they tested for was perfect (liver, kidney, cholesterol, thyroid, blood sugar, magnesium, various vitamin levels). Keep an eye on how you are feeling, keep out of the sun and make sure you’re having regular blood tests. All the best x

EricW profile image
EricW in reply toKaz747

Amiodarone generally does what it supposed to do in the short term. But in the longer term it can be pretty dangerous. I came off it after two years which was too long. My lungs were beginning to be affected. I now have a permanent thyroid problem which is treatable and fortunately the lung issue seems to have returned to normal. If I had the choice again I would be prepared to take the drug for a short spell - say three months - but no more.

Hope this helps.

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply toKaz747

Wow. Thanks so much, ablation 4 seems to have been positive for you. Thanks for replying your comments are very interesting.

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply toKaz747

I'm really happy for you that ablation 4 seems to have had a good result. Thanks for commenting and good luck :)

I suggest you use the search on this site and see all the posts about amiodorone.

Personally I will never take it again, I'd rather be in AF.

Your heart won't stop because of AF by the way, that would be VF

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply to

But if is does stop 'game over'. The first visit to clinic after AF diagnosis I was asked if there was a history of sudden death in my family. Can AF cause this,? The doctor's question made me think so!

in reply toSuzanne-Cheshire

I just googled it, and wish that I had'nt

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply to

Did you google amiodarone? Or sudden death!

in reply toSuzanne-Cheshire

Sudden death.

I'm well aware of amiodarone, it damaged my thyroid

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply to

Just read up about it too -sorry!

jeanjeannie50 profile image
jeanjeannie50

I knew someone who took Amiodarone for 8 years, during that time he didn't receive any tests or advice - didn't read the leaflet in the box either! He was going out in the sun and carrying on with his life as normal, then his AF returned and his lack of monitoring was noticed. The only way I think it affected him was that he had a very ruddy complexion, which looked quite normal too. You could say he thrived on this drug, but suddenly it wasn't working and he was taken off of it

A few years later and after having had an unsuccessful ablation a year or so earlier, he caught a cold and within a week died of pneumonia, he was in his late 70's. As far as I know Amiodarone didn't affect his health in the slightest apart from his complexion.

I took Amiodarone on two occasions pre ablations, probably adding up to a year or so in total and it damaged my thyroid making it underactive. It did little to prevent my AF either. I was blaming my AF for my extreme lack of energy. I'll now have to take pills for life to right this.

Your GP would hand you the prescription for this toxic drug without any worry, he's not the one having to take it!

Jean

Padayn01 profile image
Padayn01 in reply tojeanjeannie50

Hi jean why is this drug so bad compared with other arriythima drugs?

jeanjeannie50 profile image
jeanjeannie50 in reply toPadayn01

Because of it's side effects. When we had our Exeter get together last year, out of 20 of us there 4 had suffered having their thyroid damaged by this drug.

nice.org.uk/donotdo/do-not-...

bnf.nice.org.uk/drug/amioda...

in reply toPadayn01

Probably becauseAmiodorone is 35% Iodine

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply tojeanjeannie50

Thanks for your comments. I've still not cashed the prescription. I am now very wary. I think I would rather live with this invisible disability a bit longer.

johnMiosh profile image
johnMiosh

Amiodarone is a spectacularly effective drug, but which can have disastrous effects on a percentage of people. The worst effects are only realised after long term use, but can be very short term for some. I was on it for 3 months at 200 mg per day. Amiodarone is difficult for the body to process, so only about 2% is removed from the bloodstream each day; I calculated that at the end of three months, I had 11.5 grammes in my system. Apparently most people experience the worst effects when the dose goes above 30 grammes.

I had one raised liver enzyme (GGT) prior to AF, which was steadily reducing after stopping drinking. It remained high whileon amiodarone and continued to reduce when I stopped. The doctors tell me amiodarone has no effect on GGT.

Overall I am happy with my experience of amiodarone, I believe it probably retrained my heart after the ablation. Under no circumstances would I have been prepared to take it on a long term basis. I would ask for liver, lung, thyroid and kidney function tests prior to starting and for regular checks. Go immediately to hospital if you have a chest infection.

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply tojohnMiosh

Thank you for that. So it retrained your heart. That's what I hope from it because my heart seems to be very good at finding new pathways. That is exactly what I wanted to hear!

jeanjeannie50 profile image
jeanjeannie50

We will never know! How could he have been left for 8 years on Amiodarone without any checks whatsoever!!

jeanjeannie50 profile image
jeanjeannie50

Like everything these days, so annoying! There doesn't appear to be any real care now.

Ianc2 profile image
Ianc2

Ask about the care plan that has to be put in place between the hospital and surgery to provide regular blood tests and monitoring.

Suzanne-Cheshire profile image
Suzanne-Cheshire in reply toIanc2

Hmmmm care plan! I don't think that's a reality just a theory in my practice! But good point. Thanks.

Suzanne-Cheshire profile image
Suzanne-Cheshire

Thanks, that is a positive. I'm so glad it has worked well for you.

Suzanne-Cheshire profile image
Suzanne-Cheshire

That's my gut feeling too. I think that is the best way forward. I will find out early December if the Consultant agrees....

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