RE: Help, does any one have a good experince with amiodron?

[Guest guest]

Welcome to the group! Can you tell us a little about your history? How

long have you had afib and how often do you get it? Do you have any

other heart conditions?

Bobby

Atlanta

Help, does any one have a good experince with

amiodron?

Just started today on amiodrone. Cardio made it sound like a

neccesity although my attacks are in frequent. His choice to me was,

amiodron or coumadin.

Need some possitive feed back, nothing but negative on the web so far.

Mandy

[Guest guest]

> Just started today on amiodrone. Cardio made it sound like a

> neccesity although my attacks are in frequent. His choice to me

was,

> amiodron or coumadin.

Hi, Mandy,

I am somewhat confused. Coumadin is for clot prevention, amiodaron

is for trying to get back to normal rhythm. If you are having afib

often enough to be put on sosmething like amiodarone, I would think

coumadin was mandatory.

Myself, after the reports of permanent thyroid, lung, eyesight, skin

damage, I would only go on amiodarone if the alternative were

terrible. I don't understand why your doc is not considering

dofetilide (tikosyn).

[Guest guest]

Regarding Trudys message,

According to Cardio if I don't take the amioadrone that the coumadin

is to prevent clotting should I have future attacks? Doesn't make

sense to me so am requesting a referal from my internist for a second

opinion from a electrophiologist.

Mandy

[Guest guest]

In a message dated 5/2/2003 6:56:06 PM Central Daylight Time,

mandytofca@... writes:

> Just started today on amiodrone. Cardio made it sound like a

> neccesity although my attacks are in frequent. His choice to me was,

> amiodron or coumadin.

> Need some possitive feed back, nothing but negative on the web so far.

> Mandy

>

Amiodarone and coumadin aren't mutually exclusive choices for most of us

because one (amiodarone) addresses the rhythm problem and the other mitigates

against the possibility of stroke - more serious to some of us than the

arrhythmia itself!. So we take Coumdin along with an antiarrhymic drug. Much

depends on your age, type of afib and a host of other things. In the case of

amiodarone, many on this list have had trouble with it, but they can give you

better advice on this score than I can. There are many other medications that

you'll find on this list that all seem to work for somebody. But the

important thing is we are all different requiring different solutions.

Perhaps your cardio would be willing to work with you further. Good luck!

Brenta

[Guest guest]

> Regarding Trudy's message,

> According to Cardio if I don't take the amioadrone that the coumadin

> is to prevent clotting should I have future attacks? Doesn't make

> sense to me so am requesting a referal from my internist for a second

> opinion from a electrophiologist.

> Mandy

>

Hi Mandy,

this does make some sense to me. I must stress that we are not doctors

here and a certain amount of guess work is going on. I think it's a good

idea to listen to your Doc and quiz him about the things you don't

understand and take most things you read on the internet - including in

this support group and this email with a pinch of salt. (and it's also a

good idea to take what your doc says with a pinch of salt and get as

well informed as you can

Amiodarone is an anti-arrhythmic med - if it does it job correctly it's

meant to keep you out of AF. Coumadin is designed to reduce the stroke

risk for people with high risk of stroke when they are in AF. (So if

Amiodarone worked for you and kept you out of AF the need for stroke

prevention is massively reduced).

Some people still get AF with Amiodarone but it helps their symptoms a

lot so they stay on it - they may consider coumadin as well if their

stroke risk is high.(so you can be on both meds)

It is not true to say if you are a candidate for Amiodarone you are also

a candidate for coumadin. So you've got two differing opinions from

people in this group about this - my advice is not to believe either me

or Trudy about it - the internet is full of well meaning advice that

doesn't quite hit the mark.

The other problem you'll have in your research is that Amiodarone is at

the high end of the toxic scale so it's not a first line medication and

is often only tried when other meds have failed. I can honestly say that

prior to my AF I never once posted on the internet about all the

medication I've taken in my life that has fixed an illness.(I think the

same is likely to be true for all the people out there free of AF

because they are taking Amiodarone or any other med). I have posted to

the internet about the meds I've tried for AF and that have failed. I

believe there will be a bias about most meds on the internet in this way

- most people looking for answers on the internet are there because they

have not fixed their problem - it does not follow that we represent the

majority of people with that problem or reflect the path you as an

individual will follow. Given that Amiodarone is at the toxic end of the

scale you'll not only see that it didn't work for folk but it did them

some serious damage. (I believe around 75% of people taking Amiodarone

have reaction to it and somewhere between 15-20% of people have to stop

taking it because of reactions to the med - but these numbers are from

memory - I've not looked it up recently and my head is full of numbers

so these could be the wrong ones!).

If you are not phased about reading technical data you should be able to

find a lot about Amiodarone on the internet. Try searching for

" amiodarone monograph " at any search engine or search the medical

journals at Pub Med for " amiodarone " AND " atrial fibrillation "

(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed)

I'm one of the people that Amiodarone half worked for (it seriously

reduced my symptoms but didn't keep me out of AF). After 8 months of

taking it, it gave me thyrotoxicosis (it poisoned my thyroid) and I had

to come off the med. (and it took another 18 months to fix my thyroid)

Amiodarone is a serious medication and does require very close

monitoring so you can catch any side effects quickly. It's a very

individual problem to decide whether you should take it or not - I'm not

sure I would be here today if I didn't take it but I'm glad the

appropriate monitoring was done to catch the thyrotoxicosis quickly.

My own personal view (so the BS gets even higher here

If your AF is infrequent and your symptoms are not severe - I'd be

tempted to try the less toxic meds before trying Amiodarone (there are

quite a few) or at least get a very good reason out of your Doc why he

wants to try Amiodarone before them. There's an equally tricky decision

to make on how long you should stay on the med if it does help you.

If you continue to have AF and are a candidate for coumadin then it

sounds like a good idea to take coumadin.(not everyone with AF should be

taking coumadin but, again, it's a very individual problem)

Please don't associate any confidence in my writing with any expertise

in the subject - I can talk confidently about many things I know very

little about

All the best

--

D

[Guest guest]

Hi, Mandy,

made a lot of good sense, as always.

I think the one thing I would do if I were you is, rather than get

very worried about amiodarone, simply ask your doc why he wants to

prescribe a medication that can have such side effects when there is

a newer med, tikosyn/dofetilide, which seems to be much safer.

Perhaps he can explain his thinking better.

Tikosyn does require an initial three(?) days in the hospital for

monitoring, but my understanding is that is quite safe and simple.

They look for the one problem with it, which shows up on an ekg.

They monitoring the person closely, and at the first sign of the

problem, stop the tikosyn. I have never heard of anyone get into

significant difficulty this way. (The problem is a lengthening of a

part of the ekg.) My understanding is that if one makes it thru that

initial part, that potential problem can be crossed off. Someone

correct me if I'm wrong about this.

That said, of course is right, there aren't any doctors in

here. I just harp on this because Tikosyn is a newer med and so some

doctors are either not familiar with it or stay with older stuff, and

after reading of various people's good luck with it, and no reports

of bad stuff, I have an impulse to tug on the collars of people

heading down the amiodarone road.

[Guest guest]

In a message dated 5/2/2003 6:56:14 PM Central Daylight Time,

mandytofca@... writes:

> Just started today on amiodrone. Cardio made it sound like a

> neccesity although my attacks are in frequent. His choice to me was,

> amiodron or coumadin.

> Need some possitive feed back, nothing but negative on the web so far.

> Mandy

>

Hi Mandy

About now your probably sorry you asked but I thought I would put in my

2-cents worth. I have been on amiodarone for over a year and so far no side

effects. I take 200mg daily. The Dr that gave me my options listed sotalol,

dofetilide and amiodarone. I chose the amiodarone because I didn't want to

stay in the hospital for 3 days and my thoughts were that if the dosage was

so critical that it required a 3 day stay then how would I know if the dosage

was correct as my metabolism or rate of absorption changed? He did say that

he would not advise a person to stay on amiodarone for more than 10 years.

Since that time many people in this group have reported very good results

with dofetilide, had I known all this earlier I would have strongly

considered the dofetilide. To be fair though most bad effects of amiodarone

have occured at 400mg or higher per day.

I am also suspicious of HMO's, do they have a prescription benefit? If so

they may prefer the lower cost of amiodarone; also, they may want to avoid

the cost of the hospital stay. Then again, dofetilide is relatively new and

maybe your Dr just hasn't had any experience with it. In that regard maybe it

hasn't been around long enough to expose long term side effects.

Afib and its treatments are a big crap shoot so the optimum solution or way

to deal with it is very individualized. I wish you the best of luck, and keep

communicating with the group. We aren't Dr's but I bet at least one of us has

experienced every symtom, medication or surgical procedure available.

Guy (67) Iowa

[Guest guest]

In a message dated 5/3/2003 1:55:42 AM Pacific Daylight Time,

james@... writes:

<< Please don't associate any confidence in my writing with any expertise

in the subject - I can talk confidently about many things I know very

little about >>

,

This is very sound advice. Overly confident writing by people who actually

know very little is pervasive on the Internet. These overly confident,

self-proclaimed " experts " frighten me far more than does afib because of the

damage they can do to other people. Because I care about the welfare of

others, reading this kind of writing causes me severe stress and anxiety.

With your extensive afib experience and research, you are certainly closer

than most of us to being an expert, but none of us is qualified to give

infallible advice on the Internet to persons whom we have never even seen and

whose complete medical history we do not know. Even a fully qualified, truly

intelligent, and ethical doctor would not be willing to give categorical

advice to a patient whom he has not seen or examined. I would be especially

wary of a doctor who would be willing to give generic advice on the Internet

and of persons who write as if they think they are qualified doctors.

Expert or not, I think your advice about medication is right on target. I

would really question the prescribing of Amiodarone for a patient who has

infrequent afib with mild symptoms and who has not tried any or all of the

less serious drugs. My own E.P. said that Amiodarone would be the absolute

last resort for me who already has a thyroid problem and is nearly half blind

without contacts. :-) I have done very well for fourteen years of my twenty

year afib career on a relatively simple beta blocker Atenolol and for the

past four years on Verapamil, a calcium channel blocker. These drugs have

allowed me to live an absolutely normal life. Recently in combination with

life style changes such as giving up dairy products, these drugs have helped

to keep me out of afib. In the past year I have had two afib episodes, one

of 15 minutes on Dec. 1 and one of 68 hours on March 1. During the previous

four years, I was routinely having afib every two weeks on schedule with

sessions lasting from two to ten days. Although the drugs alone did not

completely prevent afib until I gave up dairy, they did make my life fully

livable with few afib symptoms. Now I am sure the drugs are helping to keep

me in sinus. My current E.P. said that if these drugs fail, his next drug of

choice for me would be Flecainide, but he agreed with my first E.P. that

Amiodarone would be a last resort only in the event of desperation and

debilitation by afib. I agree completely with this approach. It makes good

sense to me to try the least serious and least dangerous drugs first and to

progress to more serious drugs only after the other drugs have failed and the

afib symptoms are absolutely unbearable.

Another point on which I fully agree is the idea that any advice or

information we receive in Internet afib groups possibly represents a bias

arising from the nature of these groups. As you said, the people who tend to

write to groups on the Internet are those people who are bothered by afib and

looking for a solution/support or the more altruistic people who have solved

their afib problem but want to help others. Since the latter group is

probably small, the people who participate in groups like this are mostly

those who are having trouble. For this reason, a possibly disproportionate

number of complaints about drugs and procedures appears on the Internet

because the people who are satisfied with their drugs don't write. They

don't need to. If afib is not a problem, people tend not to take the time to

join an afib group. For example, my older brother, who has been in permanent

afib for at least twenty-thirty years, wouldn't dream of participating in an

Internet afib group. He says he has no need because afib is not a problem

for him. After years of no medication, he did reach a state of debilitation

as a result of afib about fourteen years ago, but the right medication, the

less serious drugs Digoxin and Atenolol, solved his problem. He now lives a

completely normal, very active life, never thinking about afib unless I bring

it up, and I do that less frequently now that I am in sinus most of the time.

When my brother asked his doctor what he would do if his present medication

fails, his doctor responded that there are plenty of more dangerous drugs out

there that he could try but he preferred to start with the less serious drugs

first. My brother and I agree with that approach.

Another of my brother's characteristics may also be common to some afib

sufferers. My brother tends not to look for support, sympathy, or advice

when he has a problem. He just suffers stoically in silence because he is by

nature a very private person. I am one of the few in whom he confides, and

sometimes he doesn't even confide problems to me because he knows I am easily

upset by others' problems. My point is that there may be many afib sufferers

like him out there who would not be comfortable discussing their problem with

a global, anonymous audience. For this reason, the advice and information we

read here on the Internet may come mostly from those who have a need to vent

in sharing horror stories about experiences and medications, who may get a

certain gratification from appearing to be an " expert, " or who may just want

to be helpful to others. But as you rightly pointed out, even advice from

those with the best intentions, who just want to help, can be very dangerous

if it is believed implicitly.

I'm with you, . My advice is read, research, and participate, but

believe nothing you read on the Internet.

in sinus in Seattle

[Guest guest]

Mandy - I have been on 200 mg of amiodarone for 3 years now with no

side effects. It has changed by life and has worked vey well for

me. I continue to do the periodic tests the doctor requests and so

far (Thank goodness) there has been no problem. After being on it

for 4 months I was able to stop coumadin. Was off the coumadin until

6 months ago when I had knee surgery and decided to stay on it due to

another diagnosis. My pacemaker records my incidences of afib and my

check-up 2 weeks ago said none in the last six months. The ones

before that were only 2 which were seconds long. Never felt a

thing.

There is a lot for the doctor's to consider when they recommend any

medication and they know your medical history. Good luck in yours

and their decision.

JanMarie

> Just started today on amiodrone. Cardio made it sound like a

> neccesity although my attacks are in frequent. His choice to me

was,

> amiodron or coumadin.

> Need some possitive feed back, nothing but negative on the web so

far.

> Mandy