Coming off Amiodarone

[BrotherThomas]

After being on amiodarone for about 2 years without it having the desired effect of prolonging a cardioversion, my cardiologist has advised, via my GP, that I should stop taking it as of now.

I currently take 200mg a day and he has advised that I reduce it to 100mg a day for a month then stop altogether. I know that this has been a subject of discussion before but haven't been able to find the threads so, is his advise reasonable or would those who've been in this position advise taking longer over the process?

If you get the impression that I don't trust my cardiologist you'd be right!

[Jalia]

From my memory that sounds reasonable. Why don't you have a word with your local pharmacist if you are still worried. You should be able to trust your cardiologist but I assume you've had reason to lose confidence ?!

[BrotherThomas in reply to Jalia]

Thank you for your reply, it's reassuring. I was aware of the long half life of the drug, often the case for fat soluble drugs.

Yes, I have lots of experiences that make me mistrust my cardiologist and his level of expertise but I don't feel that this is the place to air them.

[DawnTX in reply to BrotherThomas]

I was put on it following my first ablation and it made me so sick. However, I was staying in NSR. I did not let my doctor know strongly enough evidently how sick I was on it so I was kept on it for four months. When he realized he had me stop immediately within two days I was feeling better amiodarone I think it’s one of the worst although there are people here will, who will disagree.

please find yourself another doctor, because trust in your doctor is everything I think. I told my EP the other day I am putting my life in his hands that I trust him. If you can’t say that run don’t walk.

[etheral]

Keeping you on a toxic drug without getting any positive results would give me a big reason not to trust your cardiologist. You can stop the drug immediately as the half life is long and it will take months to clear your body. Make sure your thyroid, lungs and liver are checked for long term damage. Best of luck, etheral

[BrotherThomas in reply to etheral]

Thanks for your comments, it's reassuring to know. I've had regular testing of my thyroid, liver and kidneys and, so far, everything seems to be fine. However, I have noticed significant thinning of my hair in recent months and it appears to have stopped growing, which may be down to the drug. Time to come off it for sure.

[DawnTX in reply to BrotherThomas]

my hair has changed drastically this year not for the better. My hairstylist tells me between anesthesia and pretty much all the medication’s. It is normal to have happen. I had never known about anesthesia, causing it and I have had quite a bit this year and last year. I’m afraid my thick, shiny hair is gone forever thanks to a fib.

[andyk0001]

Hi, my Partner (74) is on Amiodorone 200mg which is keeping her in Sinus Rhythm. Her cardiologist wants her to reduce the dose to 100mg and see if she can maintain SR. The cardiologist is not happy for her to be on Amiodorone permanently and wants her to go on the list for an ablation. If the Amiodorone is not working then I cannot really see the point of being on it(not a medical view).

[BrotherThomas in reply to andyk0001]

I'm glad to hear that it's working for your wife and I'm well aware of it's potential for serious damage if taken long term. However, I did see an article a while ago suggesting that the damage was most likely with the older practice of prescribing higher doses. 200mg a day or less is considered to have far less risk attached to it.

In my case, it doesn't appear to have done much good and it looks like my last cardioversion only lasted a few dats. The problem is that, when in AFib, I'm totally symptom free at the moment so the only way of knowing that I'm in is with an ECG.

[andyk0001 in reply to BrotherThomas]

AFIB is a strange beast.Lots of symptoms for some and none for others. Thank you for the info about dosage levels- reassuring.

[DawnTX in reply to BrotherThomas]

It sounds like you are at least doing well right now that is why they kept me on it but did not realize how sick it was making me because I didn’t complain enough. Nothing helps me anymore and I am continually in tachycardia besides, that is why I am getting the pacemaker. The key is you having quality of life according to my EP and whatever needs to be done to get you there. I love my doctor because he doesn’t believe in repeating mistakes or failures. I’ve had several oblations of different types. Not by him FYI. The longest lasted a year and a half. The last one did nothing and I have gotten worse since that one I had two cardioversions one lasted 3 1/2 weeks. The second one totally failed with 3 shock attempts. I am at the beginning of heart failure. Now the pacemaker may possibly turn that around. The heart failure is being caused by the length of time of extremely high heart rate. I needed to come off the amiodarone. I was covered with a rash from head to toe and curled up in the fetal position for pain and illness. When I got my second ablation which was RF. It lasted a year and a half on another medication. Be aware it is not failure of the ablation that they did ask your doctor, but it is probably a new spot. Some of us just have a weakness of having them appear. My EP made it clear I will still have a fib. I will still have flutter, etc. but it won’t matter because my heart is not listening to it anymore because of the pacemaker so it will beat the way it is supposed to they will be setting it somewhere between 60 and 70 beats. QOL is all I care about and my doctor agrees.

[Visigoth]

I am on amiodarone and came down from 200mg to 100mg. I was told that it has such a long half life that it would be no problem just to stop it altogether if I needed to. I can vouch for that - it was months before I felt the benefit of reducing the dose.

[BrotherThomas in reply to Visigoth]

Thanks to you too for your comments, very reassuring.

[DawnTX in reply to Visigoth]

my doctor had me stop immediately. Once he realized sick it was making me and I did not have any issues

[riffjack846]

It's too bad the Amiodarone didn't work to get you and keep you in NSR. The next route would be to schedule an ablation.

[BrotherThomas in reply to riffjack846]

Thanks for that, I have a telephone consult with my cardiologist next month so I'll see what he says about my current position. I'm not sure that I'll be considered for an ablation just yet as I'm symptom free so my quality of life is very good. In fact, it's no different to what it would be if I was in NSR.

[riffjack846 in reply to BrotherThomas]

That's great. Good luck to you.

[DawnTX in reply to BrotherThomas]

why don’t they just do the if it ain’t broke don’t fix it? As long as your heart rate is OK and you have quality of life oh my goodness what are they doing to you? I would love to be where you are right now, except for the amiodarone.

[BrotherThomas in reply to DawnTX]

Wow, thank you for that and all of the other messages you sent me. My heart rate is usually between 60 and 70 even when in AF, which I suspect may be permanent now, and my blood pressure is also absolutely fine. I can, and do, cycle about 30 miles a week, can visit the pub for a few beers if I want to and take caffeinated drinks if I want them. So, on the face of it AF has no impact on my life so far. However, I do have an enlarged left atrium which may be due to thye length of time that I was in AF before being diagnosed. Diagnosis was purely by chance when I asked a GP to check my blood pressure the old fashioned way rather than with one of the automatic machines.

[DawnTX]

Sounds to me like you need a new doctor.

[BrotherThomas in reply to DawnTX]

Yes, I often feel that way myself but to be honest, my GP's aren't much use either and I've been told that I can't change cardiologist unless my GP agrees. The GP's are still in their Coved bunker meaning that you have to traverse a minefield, avoid the machine gun towers and barbed wire to get into the surgery, Getting in is no guarantee of getting an appointment either.

All the best.