Scaremongering Amiodarone

[bennie06]

I wish to object to the constant language being used regarding the use of Amiodarone and suggest it is not helpful, especially for those who take it! I hate taķing drugs but i put my trust in the hands of the professionals and so far it's working!

[Hidden]

I understand the point you are making Bennie, but this is an open forum where folk are welcome to express their views. There will always be things said that we won’t agree with or find particularly helpful but I guess that is inevitable. Mind you, I get rattled when young extreme athletes who have an ablation and then talk about wanting to climb Everest 2 weeks or so later...😡

[pottypete1]

I was prescribed Ameoderone about 5 years ago.

I found that it made me feel worse than having AF and asked to be taken off of the drug.

I can only speak for myself. I have to say this is an open forum where AF sufferers discuss and support one another with their individual situation.

Opinions expressed regarding Ameoderone reflect personal experience. If opinions are negative then that reflects a person’s experience.

If members of the forum have had positive experiences I am sure they will post. However it is possible that those who do have no problem are unlikely to seek out our forum.

On a positive note a comparison is those who have had a successful ablation are also unlikely to be found here.

Pete

[Buffafly]

My opinion is based on my EP's opinion, and as he is a highly skilled and respected EP I thought he should know. 'Terrib!e drug' were his exact words. I know some people can tolerate it but I think people should be warned if there is a way to avoid taking it long-term.

[CDreamer]

Any drug will have risks and benefits and people will experience both and are free to discuss appropriately. This forum helps, informs and supports many people who come frightened and worried but withholding essential information is not helpful to anyone.

Personally - I disagree with putting your trust in professionals and check everything, research and make my own decision. Refusing both Sotolol and Amiodarone probably saved my life. My body my choice.

As a matter of interest - with so many opposing medical opinions how do you choose which opinion to trust?

[Hidden in reply to CDreamer]

I agree

[BobD Volunteer]

The fact is that under European Society of Cardiology guidelines Amiodarone should be the drug of last resort for AF . Yes it can be used in emergency short term such as chemical cardioversion but not a good idea long term. It is often used to bridge over electrical cardioversion in an attempt to improve results of that DCCV but long term (i.e. many months or years) is discouraged. We were told last year at HRC that amiodarone does not have side effects. It has effects! Not great.

[bennie06 in reply to BobD]

I am due a cardioversion next month so hopefully not on Amio.. long term. My opinion also is that good news is infrequently posted.

[CDreamer in reply to bennie06]

You are probably correct. Amiodarone will increase the efficacy of CV but please do ensure your bloods are monitored and you know the numbers! My GP’s advice - given in an educational talk recently.

[Annekw]

I had a short course of Amiodarone and had no problems with this drug, if you are carefully monitored it either works or not!

[Globe-J]

Hi Beanie06,

I wish to voice a different point of view. This is a forum for opinion exchange, a source I found extremely helpful. I only ever recall opinions and personal experiences offered. Is it not the case?

Obviously, your opinion is just as welcome, but please do not attempt to stifle our debate

J

[bennie06 in reply to Globe-J]

That's rather strong! but point taken. Only news is bad news and good news is not posted as frequently.

[Globe-J in reply to bennie06]

Hi B06

Alas you posted a positive experience. Amiodarone worked for you!

I opted for an open-heart surgery, the Cox Maze procedure. Speaking with members of this forum was instrumental in reaching that difficult decision. And it worked (-:

Sorry if I offended

J (-:

[Hidden in reply to bennie06]

Not sure why but that seems to be what most people like to discuss. I found this also on face book a fib support forum. When I was first diagnosed 2 yr ago, I had to quit reading it as most of the posts were people not doing well, complaining about their 2, 3, 4th ablations and their main advice was " you must get an ablation". Not helpful but scary to me. I was on an arthritis page, same thing. Mostly complaining, not much support. I guess it serves a purpose for people to vent their fears and difficulries, but for me it was mostly frightening.( and Im a nurse!!!). Here I enjoy the most as people have been very supportive to my questions and I feel a true sense of caring. This is my place I come to check my thoughts, ask questions, etc.

[bushy2016]

Amiodarone....fantastic drug...did what it said on the label...controlled AF...and left deposits in my eyes...leaving me with poor vision to such an extent I cant see the writing on my phone without glasses....so make your own mind up..Im only telling the truth like the others who post about the T@X!C drug

[Jollies]

So pleased I am off amiodarone. The words of my ep " you see the folks pulling/pushing along an oxygen cylinder, I would say that is amiodarone " . Bit of a sweeping statement but that was the strength of his opinion about the drug.

[jeanjeannie50]

I do understand where you are coming from with your post, but life just isn't perfect. If a group of us, not linked in any way, went swimming in a pool and all ended up with D&V, would you want us to warn you about it, or just let you swim? Once you are given the positive and negative responses to anything you can make your own decision.

My thyroid was monitored before I took Amiodarone and was fine, this drug didn't stop my AF and I was taking it for about 7 months pending an ablation. In the short time I was on it, it damaged my thyroid and I will be taking tablets for that now for the rest of my life. Should I keep quiet about that - I don't think so!

I know someone else who was on this pill for 8 years and had no problems whatsoever, nor did he have any blood tests at all in that time! He should have been having them but was let down by his GP - a professional!

I come to this forum for honest advice and I certainly don't want to just see the posts saying how good something is. I want to hear all the sides of a story relating to members experiences with medication.

Jean

[MRockwell in reply to jeanjeannie50]

So true Jean my husband nearly died on Amiodarone you just have to google Amiodarone Toxcity my husband had a thyroid condition should never have been put on this drug people are suing the makers of this drug in USA.

[cassie46]

When you were given Amiodarone were the possible side effects told to you by your medic! All too often medications are given to us with no information of possible side effects. If I was offered Amiodarone and reading info on this forum I would decline it, partly because I have lung problems which it can affect and I have glaucoma and would not help this. I might take it for a very short time for a cardioversion - but as I well never be a candidate for that. Just a little aside, I changed my beta blocker a couple of weeks ago. When the chemist handed it over to me she produced a form for me to sign allowing her to ring me in a weeks time to see how I was getting on with it and to let her know of any side effects. I told her I should be okay as it was just a change of beta blockers but she still wanted me to sign it. She duly rang a week later and I had little to report. Would this not be better coming from your GP surgery! Will have to ask her next time I see her what would have happened if there had been problems - referred to GP I suppose. I suppose that it is good thing they are doing.

Cassie

[offtherecord]

I understand your concern bennie06, and your wish to accept your expert's guidance. For myself , when offered Amioderone prior to cardioversion, reading the potential side effects I was unhappy about its potentiality. My sight is already seriously compromised with a congenital condition and resulting surgery in one eye thus far. I researched, spoke to my Electrophysiologist , and my wonderfully helpful arrythmia nurse. She spoke to my Consultant. Given my mild AF it was jointly with me decided not to proceed with the drug or the procedure. The huge differences between us all mean there are no rules or protocols which cover every situation, ..... seen by the forum posts. I am relieved that I resisted the conveyor belt I was almost on. You must make your own decisions .For me, informed dialogue is a great peace of mind aide. As Bob always says, we with this mongrel condition are all so different. I continue with my second anticoagulant....the first one did NOT agree with me so I had a lengthy second battle to change that! Very best wishes, ..do what is best for YOUR peace of mind.

[Mazza23]

I don't think the intention was to scare anyone just telling the truth of our experience of the drug it is up to the individual what they do with the information

[seasider18]

It is the most effective drug but it also has the worst side effects. If you have not yet suffered them you are very fortunate.

verywell.com/the-strange-hi...

[bennie06 in reply to seasider18]

Immediately i become aware of one i will seek medical advice. Fingers crossed!

[seasider18 in reply to bennie06]

Unfortunately as others will confirm that once the damage is done it may be too late.

[bennie06 in reply to seasider18]

When you say "others" are they medical professionals and is the evidence based upon fact.

[seasider18 in reply to bennie06]

The others are members of this group and others. You only need to read what members say and what their consultants have said and the link I gave you.

What does your packet insert say about it ?

From BNF

Amiodarone has a long half-life; there is potential for drug interactions to occur for several weeks (or even months) after treatment with it has been stopped

**Common or very common***

Bradycardia; hyperthyroidism; hypothyroidism; jaundice; nausea; persistent slate grey skin discoloration; phototoxicity; pulmonary toxicity (including pneumonitis and fibrosis); raised serum transaminases (may require dose reduction or withdrawal if accompanied by acute liver disorders); reversible corneal microdeposits (sometimes with night glare); sleep disorders; taste disturbances; tremor; vomiting

Corneal microdeposits

Most patients taking amiodarone develop corneal microdeposits (reversible on withdrawal of treatment); these rarely interfere with vision, but drivers may be dazzled by headlights at night. However, if vision is impaired or if optic neuritis or optic neuropathy occur, amiodarone must be stopped to prevent blindness and expert advice sought.

Thyroid function

Amiodarone contains iodine and can cause disorders of thyroid function; both hypothyroidism and hyperthyroidism can occur. Thyrotoxicosis may be very refractory, and amiodarone should usually be withdrawn at least temporarily to help achieve control; treatment with carbimazole may be required. Hypothyroidism can be treated with replacement therapy without withdrawing amiodarone if it is essential; careful supervision is required.

The less common are more scary.

[bennie06]

I will also be glad to get off it too!

[seasider18]

In an earlier post you said:

"

I am walking fine without any problems, sometimes 2 miles but fear that Armiodarone with all its side effects may impact that!!

"

Why have you changed your mind? Knowing of my first problems with amiodarone a cardiologist said that I could get by taking bisoprolol until my cardioversion. I then got a know all, know nothing junior at my next appointment who said if I did not take amiodarone I would not get the cardioversion. She also didn't know that my warfarin should be reduced when initially taking amiodarone and the next week my INR was up to 4.