Amiodarone

[Guest guest]

>The purpose of this web site is to inform patients of the serious,

>permanent and fatal side effects that may occur with Amiodarone use.

>300 reported deaths is a very large number. This number only reflects

>the deaths and adverse reactions actually reported to the FDA. It is

>estimated that only 1-10% of ACTUAL damage is ever reported.

I agree that 300 is 300 too many and a single death of a friend or relative is

particularly hard to see. There are around 5 million AFers in America and Europe

so if the number of problems with amiodarone was 3000 this would represent 0.06%

of AFers. I've read that 70% of people taking amiodarone will experience some

type of adverse reaction with 5-20% being of sufficient severity to warrant

discontinuation of the drug.

>I lost my mother and brother-in-law to this drug. Lung toxicity from

>Amiodarone is a horrible way to die. The creator of the Amiodarone

>web site was left legally blind after 5 months of Amiodarone use.

>Please do not trivialize the damage caused by this drug.

I'm really sorry to hear about your losses and am enormously grateful to you for

sharing this information. I do not believe that Don or I am trivialising

anything by trying to find out the full story. We have many hard decisions to

make and knowing all the facts will lead us to better decisions.

Your information, though sobering, is greatly appreciated.

--

D (32, Leeds, UK)

[Guest guest]

> .

> Please do not trivialize the damage caused by this drug.In

My remarks were certainly not intended to trivialize anything. As

someone who was on Amiodarone for four years, the potential dangers

were on my mind constantly. I am in the business of buying time

until something, perhaps in the ablation area, gives us something

more permanent. Amiodarone gave me four years before it began to

fail me. Fortunately I had no serious side-effects. I agree with

C. that patients should be monitored more closely. My

Cardiologist suggested every six months but, fortunately, my GP

insisted on every three months. I am concerned that so many

physicians seem to give Amiodarone as the drug of first choice. If I

had to do it all over again, knowing what I know now, I probably

wouldn't take it for as long a period. But if it was a choice between

permanent afib, which I have now, and Amiodarone, I'd take it in a

minute for a maximum of two years. That would be my choice and it

wouldn't be trivial. Others wouldn't take it - and good for them!

That would be their choice.

Don, Ontario

[Guest guest]

Don,

Perhaps you should understand what happened to my mother. Then perhaps you will

understand what the victims of this drug are trying to say. I am NOT in the

business of " scaring people. "

My mother was diagnosed with a fib by her primary care doctor on a visit. She

had been in a week earlier and no afib. So it was a recent onset. He insisted on

her seeing a cardiologist immediately. She was told that cardioversion would

probably not work in a woman her age (76). She was prescribed 3 drugs

Amiodarone, coumadin and atenolol. She was not informed of the risk of pulmonary

toxicity. She was not informed that the interaction of Amiodarone and atenolol

increased risk of hypotension and brady cardia. She was not informed that the

interaction of coumadin and Amiodarone doubled her risk of hemorrhage. She

started having nightmares. She had headaches, runny nose and shortness of breath

(she blamed this on a fib). Her INR's were very unstable and the dose of

coumadin was constantly changed. the doctor saw her in Dec. He noted the

breathing problems and blamed a fib. When I saw her at Christmas, I was shocked.

I told her in January to call her cardiologist and tell him this drug was not

helping. She promised to discuss it on her 2/5/99 visit. At that visit, her afib

is worse and so is her breathing. Amiodarone is stopped. She is told to return

in 3 months to discuss cardioversion. When Amiodarone is stopped, blood levels

drop for 12-25 days.Then all of the amiodarone stored in the body begins to be

released.

On 2/18/99, my mother is admitted with a diagnosis of pneumonia. She is told she

will receive antibiotics and be home in 3-5 days. On 2/21/99, her condition

rapidly deteriorates. Her kidneys go into acute failure, her heart rate drops to

40 and is in sinus arrest (interaction with verapamil given in hospital), her

INR is over 9 (interaction with coumadin), her liver enzymes are elevated, her

CPK is high (muscle damage), her glucose is so high, she requires insulin (no

history of diabetes) and her respiratory condition now requires a respirator. We

are told her condition is a mystery. My mother was prescribed the first generic

version of Amiodarone-Pacerone. It was approved by the FDA in April of 1998. It

was not in the 1998 PDR when I tried to look it up. A few days later, a doctor

told me to look up Amiodarone. After one hour of research, I knew what was wrong

with my mother. I then called her pulmonologist in the hospital and explained

she had been on Amiodarone prior to admission. He said, " Are you trying to tell

me your mother has Amiodarone toxicity? " I said yes. I was then informed that he

and the cardiologist had suspected this and started her on steroids. I was

shocked. We were constantly being told no one knew what was wrong. I was then

informed that I was never allowed to call him again and I would only be allowed

to communicate with her primary care doctor.

Her kidney function returned after 2 dialysis treatments. Her lung function

worsened. Her arms began to swell (angioedema). Her skin began to blister and

leak fluid (toxic epidermal necrolysis). She developed pancreatits. After 4 1/2

weeks, we removed life (per her wishes in a living will) due to hopeless medical

condition. She died 3/21/99 (5 months after being prescribed Amiodarone).

Her story is not as unusual as you would think. I have heard from many around

the country who have lost relatives to Amiodarone lung toxicity. Last week alone

I was informed of 3 more deaths and received another email from someone whose

grandfather was dying from it.

I firmly believe any person has the right to decide their treatment after being

informed of the risks. Most patients are not informed. Most doctors do not

properly monitor. Many do not even recognize the side effects when they appear.

My mother disliked medication of any kind. She took only one aspirin for a

headache, because 2 might be too much. She knew what coumadin could do and was

frightened but took it when I explained the risk of stroke with a fib. If she

only had some idea of the toxicity of Amiodarone, she would never have taken

it....and it would have been ... good for her!

Re: Amiodarone

> .

> Please do not trivialize the damage caused by this drug.In

My remarks were certainly not intended to trivialize anything. As

someone who was on Amiodarone for four years, the potential dangers

were on my mind constantly. I am in the business of buying time

until something, perhaps in the ablation area, gives us something

more permanent. Amiodarone gave me four years before it began to

fail me. Fortunately I had no serious side-effects. I agree with

C. that patients should be monitored more closely. My

Cardiologist suggested every six months but, fortunately, my GP

insisted on every three months. I am concerned that so many

physicians seem to give Amiodarone as the drug of first choice. If I

had to do it all over again, knowing what I know now, I probably

wouldn't take it for as long a period. But if it was a choice between

permanent afib, which I have now, and Amiodarone, I'd take it in a

minute for a maximum of two years. That would be my choice and it

wouldn't be trivial. Others wouldn't take it - and good for them!

That would be their choice.

Don, Ontario

[Guest guest]

In a message dated 12/2/01 6:25:10 AM Pacific Standard Time,

john.codling@... writes:

> I do not intend to worry the board but perhaps we should be more aware of

> what we are putting into our bodies. I hope you all do not mind me sharing

> this with you

I appreciate your sharing. One cannot receive enough knowledge on anything.

Thank you.

MK in Louisiana

[Guest guest]

There appear to be two completely separate problems with this thread on

amiodarone and I think it is very important to separate them.

Problem 1

Amiodarone has a very high toxicity.

Problem 2

There a some bad doctors out there.

I feel the main problem to try and fix is number 2 but we are in danger of

confusing the issue by mixing in problem 1. Yes, we should tell people about

amiodarone toxicity but if it is administered under the right conditions the

risks can be minimised.

--

D

[Guest guest]

,

I totally agree with you on this one.

I have been holding back on what happened to Me while on Amiodarone for fear

of causing a panic of the group and patient stopping there treatment.

It seems now the flood gates have opened and perhaps we should all be aware

of the side effects of this drug.

I was first put on this medication in July 1996 on the recommended starting

dose of Three tablets for a week then two then the maintenance dose of 200

mcr per day.

All was well and after three weeks I returned to NSR. I felt great and

starting back to the GYM. The weird side effects I have at that time were

awful night mares of the worst imaginable kind, I must add these only lasted

for around a month.

I was put on this drug by my Cardiologist but prescribed this by my GP.

Before he would give me the prescription he said do I really want to take

this drug and suggested that I should come into his surgery with my wife for

a consultation.

I was informed this was the drug of last resort and he would feel better if

I was a lot older in life, I was 45 at this time but as there were no other

drugs available, this may act as holding drug until more suitable

medications could be invented. He also warned me If I developed a dry cough

I should stop taking this med. immediately and seek urgent medical help

He said there was evidence that Amiodarone could cause serious side effects

and these can be fatal he would not elaborate on this to either of us. He

did make a passing remark that he did not expect me to be on the drug for

more than 10 years as I would not be here.!!!

As I felt so bad with AF I agree to take it. Immediately my INR went

through the roof and my Wafarin medication went from 5 mg per day to 2 mgper

day. I do admit for the first six months I felt great and went to the GYM. I

started to develop a dry cough but this went after a week.

I also noticed that my Asthma started coming on very badly. IN Jan 1997 we

went to Sofia Bulgaria for the New Year, I noticed I started coughing up a

lot of Mucous . On return to the UK I was diagnosed with a chest infection

and put on antibiotics. All went well for a month or so. The it came back so

bad I was like an old man.

It got progressively worse that I could not breathe and was taken into

Hospital for two weeks. They suggested that there was nothing in the

Amoiodarone to cause this and I just needed steroids treatments. I will no

go into this in great depth but I found that to get to sleep my wife Tania

had to bang on my chest to bring up the mucous. I was so tired and worried

life was not fun.

We then went on a holiday to Thailand and that was the nightmare of my life

I could not breathe and just felt bad. We discussed on holiday what steps

needed to be taken and decided then to look for a second opinion.

At this time I had just taken to getting connected onto the net and found

the Cardima web page. I also got talking to a Dr Amiarini from Cardima

who suggested that Amiodarone can cause Lung problems. was very

surprised that I was unaware of the toxicity of this drug I went about the

net and found all the information armed with this I asked to come off of the

drug. I was informed that if I came off of the drug there was little that my

Cardiologist could do for me. (Time to change DRs) After a month of coming

off of Amiodarone I started to feel better and all returned to normal.

I was now under an EP and after several in stays in Hospital It was

suggested to try Amiodarone again this time I had a promise not longer than

Six months. After two months of this therapy I started shaking and lost a

lot of weight 2 stone( 28 Ilbs) and I was eating like a horse.

I was diagnosed with hyper thyroidism. I lost my Thyroid in October 1999 to

Amiodarone.

In summary. The drug caused lots of problems for me. Minor problems were

nightmares, sun burn, I use to get burnt through the window of my car.

My InR level were elevated but this did not cause me a problem.

PFIZER would not let me use Dofetilide for Six months prior to stopping

Amiodarone.

Prof. H would not attempt an ablation for three months after stopping

Amiodarone.(it masks Ectopics).

My INR level took 7 months to get back to normal , which I took to mean the

drug takes that long to get out of your body.

Positive side I had a healthy glow and did feel well for those six months.

I honestly believe there is a small place in the drugs use for al of use but

for a short period of time.

I do not intend to worry the board but perhaps we should be more aware of

what we are putting into our bodies. I hope you all do not mind me sharing

this with you.

Regards

C

There appear to be two completely separate problems with

this thread on

amiodarone and I think it is very important to separate

them.

Problem 1

Amiodarone has a very high toxicity.

Problem 2

There a some bad doctors out there.

I feel the main problem to try and fix is number 2 but we

are in danger of

confusing the issue by mixing in problem 1. Yes, we should

tell people about

amiodarone toxicity but if it is administered under the

right conditions the

risks can be minimised.

--

D

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[Guest guest]

I consider amiodarone to be the devil's brew, as many

know. I had asymptomatic afib, got hit with this, didn't

find too much bad about it on the internet (then!), took

it 2.5 mos and was in and out of the hospital and doctor's

offices with lung, thyroid, eye, you name it--EVERYTHING---

problems. Am still waiting for half a head of hair to grow back.

The only thing that didn't happen was my skin turning

permanently gray, which amiodarone can also cause. The docs

(the ones who " monitor for trouble, " mind you) thought of everything

(post-polio syndrome, AIDS) but this as a cause. When I finally

got off it (oh, it also did not cure the afib, which was almost beside

the point by then), it took 6 mos to return to normal and I still

get laryngitis at the end of the day.

I wouldn't take any doc's word on this stuff. But mileage may vary.

Lawrence

[Guest guest]

on Tue, 11 Dec 2001 at 12:47:27, auteurette@... wrote :

>I consider amiodarone to be the devil's brew, as many

>know.

>I wouldn't take any doc's word on this stuff. But mileage may vary.

>

>Lawrence

Thanks for this. I've already found my GP to be not concerned enough

for my liking about starting on amiodarone, so I am going to try and get

the hospital Consultant I am under to be more careful if we finally

decide amiodarone is the next step. I've printed your e-mail off and

will keep it safe in my amiodarone-warnings file.

Best of health to all,

Vicky

" You can convert some of the people some of the time,

but you can't convert all of the people all of the time "

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