Should I take Amiodarone?: Has anyone... - Atrial Fibrillati...

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Should I take Amiodarone?

Jeans1234 profile image
46 Replies

Has anyone had any experience of taking amiodarone and would you recommend? Many thanks

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Jeans1234
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46 Replies
pottypete1 profile image
pottypete1

General feeling on this forum is that Ameodarone is very effective and good for a short term fix.

BobD often says Ameodarone doesn’t have side effects it has effects.

The was put on it many years ago but I felt awful and didn’t continue taking it for long. I was put back onto Flecainide.

Pete

Jeans1234 profile image
Jeans1234 in reply topottypete1

Thanks Pete

BobD profile image
BobDVolunteer

Amiodarone is the ESC drug of last resort because whilst it does what it sets out to do it does have some unpleasant effects in some people. General use is for short periods prior to cardoversion (DCCV) or post ablation to let the heart heal in peace. LOng term use (longer than six months is not a great idea.

Jeans1234 profile image
Jeans1234 in reply toBobD

Thank you Bob, I had a blood test in December which revealed I may be borderline underactive thyroid & I understand amiodarone may exacerbate a thyroid condition

BobD profile image
BobDVolunteer in reply toJeans1234

It is one of the effects yes.

etheral profile image
etheral

I was placed on Amioderone shortly after my first cardioversion only lasted a few days. The expectation was I would receive another CV after the loading dose of Amioderone. I was una ble to tolerate the short term side effects and had to discontinue the drug after a week. After reading about the longer term effects I am glad this occurred. I was placed on Tikosyn and while getting my loading dose in the hospital I converted to NSR and have remained so for 3 years without side effects. Best of luck..

Jeans1234 profile image
Jeans1234 in reply toetheral

Wow, so glad you are feeling better. Are you based in the UK? Is Tikosyn available here?

etheral profile image
etheral in reply toJeans1234

I've been fortunate and have had no side effects from the Tikosyn. Nothing out of the ordinary physically, no arrhythmias or lab abnormalities. It's worked perfectly keeping me in NSR for 3yrs. Keeping my fingers crossed...

lovetogarden profile image
lovetogarden in reply toetheral

Do you have any side effects from the tikosyn? My dr is suggesting switching from sotalol to tikosyn. The sotalol is working well on the afib/flutter, but any vaguely strenuous exercise (gardening, hiking, etc.) leaves me out of breath, very dizzy, w headaches. I understand why that’s happening, but hate it. Just wondering if tikosyn would really help w those problems.

Rubymurray25 profile image
Rubymurray25

During the past 7 years I have been tried on a number of meds and in the main they have been OK until they appear to run their course of effectiveness. Following a hospital visit following a full blown AF episode last July and my usual 300mg Flecainide PIP didn't work so they tried two other drugs intravenously , neither worked but the third , Amiodarone, did so I was immediately put on the tablet form, 600 mg a day for the first week, 400mg second week and then 200mg a day. The Consultant did warn me at the time to have my Thyroid checked regularly but gave no time frame so after 3 months I asked my doctor to do a blood test, the thyroid was only slightly raised. I was only meant to be on the drug until they could do my third abaltion, but as we know with Covid things have all changed. Two weeks ago I went for an annual eye test and the alarm bells rang and I was sent for an emergency eye appointment as my blood pressures were 30 ( 24 is classified as the highest limit ) . I have been seen by The Sussex Eye Hospital and without going into the details things need urgently sorting. I have another blood test next week as it is just over 6 months since I was put on Amiodarone. Without wishing to tempt fate the drug has done a brilliant job with my AF. I know some people really dislike the drug and can't tolerate it. I have a feeling when I had the 3 monthly blood test it was just checking for the thyroid otherwise it might have picked up on how the drug was effecting my eyes so badly??? So having said all the above I think with Amiodarone certainly has a place but we need to push hard for regular tests for potential side effects other than the obvious ones, that said if you read the leaflet ( available on line ) it does very much warn against the eyes!

Jeans1234 profile image
Jeans1234 in reply toRubymurray25

Thank you, that is so helpful. I would prefer not to have to take any medicine at all! Good luck with your eye tests.....

Ppiman profile image
Ppiman

My cardiologist was going to try amiodarone to control my persistent atrial flutter back in 2019 but I was able to have an ablation instead. Apparently, it is one of the very few drugs that can control atrial flutter. It seems to be a rather feared drug, but I would always be guided by my own doctor's views rather than the experiences of others, myself, not because I don't trust other people, far from it, but because only my doctor knows the details of my specific condition and has my best interests at heart.

Steve

Jeans1234 profile image
Jeans1234 in reply toPpiman

Thanks, my problem is that I have never met my doctor, he doesn't know me, I am just a name on a list for a doctor at a very busy hospital in the midst of a pandemic!! I had to wait months for a 10 minute phone call. Not ideal...

Ppiman profile image
Ppiman in reply toJeans1234

My goodness, what a bad situation. Do you have atrial flutter? It’s usually used for that. The difficulty with some heart drugs is that it depends on how otherwise healthy your heart is and especially on its electrical activity as to whether they are suitable.

Steve

I've heard they don't give it to patients with any kind of Lung issues. It is one of the antiarrhythmics with more serious side effects.

I've been on Flecainide, which worked effectively at its 50mg twice a day lowest dosage. Although it doesn't have the ugly side effect profile of Amiodarone ... my Cardiologist told me it, too, has 'nasty' side effects.

I used it very effectively to cardiovert me several times as a pill-in-the-pocket 10 years ago. I took it continually (without any side effects) from SEPT to Christmas last year ... and discontinued after OCT ablation.

So Amiodarone is scary; and, Flecainide is less scary. However, for every person who has had a serious side effect .... you'll probably hear from 100 who will tell you it has given them their quality of Life back.

Jeans1234 profile image
Jeans1234 in reply toThe_Lord_is_with_Us

Thanks, I have to make a decision, I will either not take it, or ask for an alternative, or take a half dose

cuore profile image
cuore

Apart from the side effects, I felt Amiodarone was flipping me into AF. As soon as I started Flecainide, I went into sinus. Amiodarone was not the drug for me.

Jeans1234 profile image
Jeans1234 in reply tocuore

Thanks, I am in AF all the time

Jajarunner profile image
Jajarunner

I was on it for six months prior and post ablation. Half dose only 100 mcg. It was fine though I have had some weird liver tests results since but they seem to be self resolving. I have liver malformations anyway though.The arrythmia nurses told me, when I said it was a horrid drug, "no, it's s great drug with side effects for SOME,".

Best wishes xx

Jeans1234 profile image
Jeans1234 in reply toJajarunner

Many thanks, that is very helpful, I am thinking about taking the half dose

Glad80 profile image
Glad80

What happens if you are on amiodarone and side effects are found? Do they treat the side effects or change this drug

Jeans1234 profile image
Jeans1234 in reply toGlad80

I am not sure

colourblue profile image
colourblue

Hello, I took Amiodarone for about 8 months, the main effect for me was it did affect my Kidney function, also Insomnia was a problem, but that may partly be caused by my anxiety about taking this drug. My Optician was shocked that it was still prescribed as it can cause sight problems. I saw my Cardiologist & told him I was not happy on it, he agreed that I will just try Bisaprolol & Apixaban, I do get days when I feel the A Fib, but try hard not to get too anxious. It may be fine for you, just be guided by your Consultant as cases can be different. Best wishes.

Jeans1234 profile image
Jeans1234 in reply tocolourblue

Thanks, I wish I could contact my cardiologist, it is impossible during the pandemic

Sheross profile image
Sheross

I was put on it via IV earlier this week and now at home on the tablets. Hopefully short term while my heart heals from my December ablation (my third since March). It’s working so far as my arrhythmias were all over the place. Will have my thyroid checked in 2,5 weeks and other tests at 3 months.

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply toSheross

I pray this 3rd one is a great success for you . . .

Jeans1234 profile image
Jeans1234 in reply toSheross

Thanks and good luck

Ianc2 profile image
Ianc2

I spent some time on this drug. My skin reacted to any sunshine very rapidly. I would have a really hard look at diet with the aim of knocking out as much sugar as you can and getting your weight down to about the mid point of your BMI. Every excess 2 lbs you carry is like a bag of sugar on your back. If you are a stone overweight try putting 7 bags of sugar in a bag and carry it round for a while and see how you feel. When you put it down the rebound feeling is great..

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply toIanc2

I'm with you on sugar. Nothing good about it .... although some posters here love it. Sad. It will only bring them grief because robust health will be unattainable.

Jeans1234 profile image
Jeans1234 in reply toThe_Lord_is_with_Us

It's hard but I'm trying

Jeans1234 profile image
Jeans1234 in reply toIanc2

Thank you, that is very good advice. I used to have 3 spoons of sugar in my tea, now I am down to one. I have put on half a stone over lockdown and I am trying to lose that plus another half stone!

MarkS profile image
MarkS

Amiodarone is associated with increased mortality. In this analysis, mortality was increased by 2.4 times:pubmed.ncbi.nlm.nih.gov/264...

Jeans1234 profile image
Jeans1234 in reply toMarkS

Thank you

Sheross profile image
Sheross

That's long-term and fortunately (sort of, not really) I have structural heart disease.

Jeans1234 profile image
Jeans1234 in reply toSheross

Thanks

Ianc2 profile image
Ianc2 in reply toJeans1234

Your other alternative is to dig up about £200 and go for a private appointment with an EP. You will be seen quite quickly and get a face to face interview. If you ask around you should be able to get a few recommendations and he/she will be able to advise you of your options and possibly put you on a waiting list for an ablation..

Jeans1234 profile image
Jeans1234 in reply toIanc2

Thanks. That is what I will do, getting nowhere with nhs

Jeans1234 profile image
Jeans1234

Thanks, I believe you

Yoursonice profile image
Yoursonice

Amiodorane is great for a short period of time, but not for longer as it will affect your kidneys.

lovetogarden profile image
lovetogarden

Like others here, my dr said this drug was effective, but I was “too young”. I’m 65! 😀 Said it had dangerous side effects. Guess if I’d been 90, he might have considered it. 😱

Nyhyttan profile image
Nyhyttan

I am soon 80 years old and as an alternative to Ameodarone been treated with Dronedarone which is supposed to be less toxic. Since being put on that medication my PAF occurs 6 to 8 times per year and self terminates within 7 hours. I also suffer from chronic bronchitis but Dronedarone has sofar not affected my lungfunction. I have regular lab. tests for my kidney function and sofar so good. The only experienced side effect is a slight lethargy but I am still reasonably active for my age.

I have been offered an ablation alternative but because of the pandemic have up to now declined the offer. Apart from Dronedarone I also take Apixaban. I live in Sweden and am satisfied with our medical services. It would be interesting to hear somebody elses experience of Dronedarone.

Safc1983 profile image
Safc1983

I took it while awaiting ablation. The procedure has been delayed due to covid so I stopped taking it as I was experiencing pins and needles in my left arm. My cardiologist said it wasn’t a listed side effect of Amiodorone and probably wasn’t linked but the tingling stopped when I stopped the drugs.

Jeans1234 profile image
Jeans1234 in reply toSafc1983

Thank you, that is very interesting. How long had you took it for and how long will it be for your ablation? Are you living in the UK? I am worried that if I start taking amiodarone now that everything will be delayed till next year or longer

Safc1983 profile image
Safc1983 in reply toJeans1234

I’m in London. I’ve been given a date later this month so I’ve started taking Amiodorone again today.

croylass6 profile image
croylass6

Did you have to get an ablation ?

Jeans1234 profile image
Jeans1234

Wow, that's great, which hospital ?

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