AMIODARONE FOLLOW UP: Hello fellow afib... - Atrial Fibrillati...

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AMIODARONE FOLLOW UP

kocoach profile image
29 Replies

Hello fellow afib sharer's. Just got back from GI appointment and guess what? Now I have to have ultrasound on my liver as x-ray showed fibrosis on liver that wasn't there on previous x-ray so too it shows enlarged liver which also was not on previous x-ray. I was told that Amiodarone is known for that as well as fibrosis of liver which I never knew. This is one NASTY and DANGEROUS drug. I go this coming Thursday for ct-scan to see how bad the fibrosis actually is. I have cut my amiodarone in half to 100mg a day and I will eventually stop it completely, would've done it now but promised my cardiogolist I would stay on it until ct-scan. It just seems very strange that my EP is not as concerned as the other Drs. I see are. Has anyone every stopped cold turkey taking amiodarone or do you have to be weaned off of it? Thank You All Have a Great Day.

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kocoach
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29 Replies
BobD profile image
BobDVolunteer

I only ever had amiodarone via drip whilst in hospital so never taken tablets but I do understand that it does take quite a time to clear the system. Maybe weeks rather than days.

kocoach profile image
kocoach in reply to BobD

One of the members on the forum said she read it takes 80 weeks to get it completely out of your system. If that's the case this drug is a killer, I'd rather live with constant afib. Have a Great Day.

oscarfox49 profile image
oscarfox49 in reply to BobD

Months rather than weeks. 100 days is the average figure quoted. In my experience, at least that long.

jeanjeannie50 profile image
jeanjeannie50

Amiodarone can take several months to clear from the body. I took it and it damaged my thyroid, made it underactive. Will have to take drugs for life now to correct that. May have also caused scarring on my lungs. I detest that drug!

Jean

kocoach profile image
kocoach in reply to jeanjeannie50

AMEN to that. I despise it.

BeeBee79 profile image
BeeBee79 in reply to jeanjeannie50

how long were you taking it for?

jeanjeannie50 profile image
jeanjeannie50 in reply to BeeBee79

From what I can remember on two separate occasions for about 6+ months each time.

BeeBee79 profile image
BeeBee79 in reply to jeanjeannie50

Wow so not a long time. I was on 200mg for 3 months then on 200 every other day for 2 months. I’ve gained so much weight despite doing a very low carb diet - it’s not shifting and I’m wondering if it has affected my thyroid too.

I’m getting blood work in mid-October so will be interested to see what it comes up with. Thanks for replying x

Fullofheart profile image
Fullofheart

I was on amiodarone and caused underactive thyroid. Was told to just come off it. No weaning. They replaced it with dronedarone. Like Jean the damage was permanent but I suspect I was already heading this way. My mother has underactive thyroid.

oscarfox49 profile image
oscarfox49

One of the (dubious) benefits of Amiodarone is that you can't 'cold turkey' it as it has such a very long half life and stays active in your system for many months. (The half life is quoted as from between 25 to 100 days). In the same way it takes quite a time to build up in your system when you first take it and it suffuses all of our organs and tissues. While it may be that abruptly stopping it could be dangerous if you have no alternative to control the AF, you are slowly reducing it as the body eliminates it very slowly anyway when you stop taking it. Another problem is that if you change to another drug like a beta blocker, with the half life both drugs will be active in your system together for some time. When I finished Amiodarone after three or four months, I only slowly introduced sotalol as the Amiodarone slowly was purged from my system. I would swear I was still feeling the effects of it after three months though.

Bolander profile image
Bolander in reply to oscarfox49

I went straight from Amiodarone to Sotalol after a change of cardiologist with no apparent problems and have remained on Sotalol for several years.

oscarfox49 profile image
oscarfox49 in reply to Bolander

I think you were very fortunate. Sotalol is listed as contraindicated with Amiodarone. But if you take it just after stopping Amiodarone then that drug is still active in your system and will continue to be so for many weeks in declining amounts. This means the two can interact of course and potentially cause bradycardia and potentially serious arrhythmias, Just because nothing happened to you it should not be recommended that others do this. I had a paid consulation with a UK cardiologist in London before I made the transition from Amiodarone and he was very clear on this. The advice was to start with a very low amount of Sotalol and then gradually increase it to the normal dose as the effects of the Amiodarone began to fade away.

kocoach profile image
kocoach in reply to oscarfox49

Thank you for that information. This is one DANGEROUS drug.

4chickens profile image
4chickens

I stopped it without weaning off, went from 200mg a day to 0. This was on surgeons advice due to a lengthen QT. No idea if it’s out of my system yet as apparently it can take up to 90days. I was glad to stop it but also grateful that it kept me in NSR whilst my heart got over its trauma.

BeeBee79 profile image
BeeBee79

I was on 200mg and was meant to stop cold turkey but instead for a further 2 months reduced it to 200mg every other day. This wasn’t for any other reason than not wanting to rock the boat with my symptoms.

Can I ask how long you have been taking the drug for?

Visigoth profile image
Visigoth

Could I ask what prompted getting an X-ray of the liver and what symptoms you had? I am on amiodarone and I have regular blood tests but have never been asked to go for a liver X-ray. I’m worried now!

On the question of how long it takes for amiodarone to get out of your system, my experience was that when I cut down from 200mg to 100mg because of excessively low heart rate, it was months and months before I noticed any difference. I would say 90 days is the absolute minimum.

kocoach profile image
kocoach in reply to Visigoth

The GI Dr. when I told her I was on amiodarone said that on a previous x-ray, ct-scan she noticed there was signs of fibrosis in liver which weren't on my other imaging and she said this is one of the side effects of this drug. I've been on it way too long, five years.

Visigoth profile image
Visigoth in reply to kocoach

Thank you. I think I will need to ask if I need to get an x-ray or scan. I don't know if the blood tests would indicate a problem of that sort.

Prettyorchid profile image
Prettyorchid

I too am not Amiodarvone tolerant. It lowered my HR to 38 causing an ER admission where they found my thyroid function had tripled from Dec to Feb. thankfully they found before any real problem….immediacy started lowering after I stopped!

kocoach profile image
kocoach in reply to Prettyorchid

I've already cut it in half from 200mg daily to 100mg. Tomorrow I get another ct-scan and a holter monitor.

1Golf profile image
1Golf

I agree, my cardiologist called it a Dirty Drug

LaceyLady profile image
LaceyLady

My consultant mentioned the drug to me, I said NO WAY and he’s put me on Dronedarone and I’m not sure I’m liking this either 🤯

2023AFibber profile image
2023AFibber in reply to LaceyLady

My Doc wants me to do Amiodarone also, I also said no way. Been on Sotalol for 3 months, pain is the arse trying to take it properly-the not eating hours. Do the best I can but not sure it is doing its thing. I am so over AF and the drugs. I have emphysema and the heart drugs negatively effect the lung drugs so barely breathing.

kocoach profile image
kocoach in reply to 2023AFibber

I've had afib for 32+ years and I agree with you I'm over it. I hope they find the right combination of meds that work for you. I was on Tikosyn (Dofetilide) for 20 years and it worked very well for me, you may want to mention to your Dr.. Have a Good Day

Bolander profile image
Bolander in reply to 2023AFibber

I have to take Lansoprazole a half hour before breakfast in any case, so I take Sotalol at the same time, then again just before bedtime. this is easy to remember and doesn't seem to cause any problems as it has kept me in NSR for several years.

Nafi profile image
Nafi

I had this awful drug twice by drip in hospital ( much to the senior ward sister disgust ) and then tablet form whilst waiting for an ablation 5 months later. When leaving hospital after ablation I was told to stop taking the ammiodarone immediately ( kept on anticoagulants and beta blockers) so no gradual reduction for me . I too now have under active thyroid from this horrible drug and stomach issues.

kocoach profile image
kocoach in reply to Nafi

I'm sorry to hear that. I will know later today how bad the fibrosis is, I just PRAY that we caught it in time as to not have done too much damage. Thank You I hope you're getting along OK now. Have a Blessed Day.

dmac4646 profile image
dmac4646

EP told me recently that if you are unlucky even on a low dose for a short period it can cause havoc due to long half life.

waveylines profile image
waveylines

So sorry to hear what happened. I'm currently on this drug. Hoping for not too long as part of a post op recovery plan. I had no idea of its potential to cause so much harm so I'm concerned. I was handed a booklet at the time but tbh post op you're not exactly on the ball & the drug had actually already been introduced during my stay without me knowing!! Am not happy about that tbh but feel I now have little option but to follow through. I had thought it was just for three weeks but no that was loading period. I will ask to come off it ASAP but recognise my heart needs to recover probably before I can do so. Thank you for the info. Hope you get sorted soon.

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