Re: Amioradrone or Amioradon't !!

[Guest guest]

Again, for the benefit of our new folk, I have taken the liberty of

repeating 's Amioradrone post, as well as Vicky's " Amioradont "

reply.

As for me, the only experience I have had with this drug is that I

overheard a doctor outside my hospital room saying something

like, " this would be the last drug I would give to her - too many

side effects " .

Ellen

69 NC

(NSR on Dofetilide - absolutely no side effects)

*************************************

Codling, <john.codling@c...> in another thread wrote lots of

sensible stuff about the risks of Amiodarone, henceforth, I humbly

suggest, to be know as " Amioradon't " :

Amiodarone I honestly feel should be better controlled.

This, for all our West Atlantic and Antipodean cousins, is what we

over here know as the English art of understatement :-)

Better controlled, I mean that perhaps monthly tests should be given

to each patient, fact sheets on what to look out for referencing to

side effects. The first time I was given this drug I was just given

a prescription and that was it, it was the attached instructions

enclosed with the drug that was alarmist. Also one of my GPs had

sounded the warning bells by > >saying in a casual manner " be

careful the hospitals have a tendency to use Amiodarone at the first

instance it's a nasty drug " . We then asked for a meeting with my

own GP who was far from happy about me a young man going on this

drug. Questions were being asked at me , how long are you going on

this drug, you cannot take this for the rest of your life, who is

going to test your Thyroid, have you been warned about your eyes. I

can assure you I did not sleep too well for a few weeks. He then

made a very frightening statement that one of the side effect a dry

cough, which could be fibrous Lungs or black lung disease. This

meant certain death. (snip)

I have to say that my first Cardiologist was good enough to point

out that amiodarone had what he termed " a spectacular list of side

effects " . For a mainline NHS Cardiologist, (who showed to me no

signs that he was anything other than normally pharmaceutically-

oriented), to say this, affected me deeply. Later a Gastro-ent who

was investigating me said " if you were older, I am sure you would be

on Amiodarone by now " (I was then 46).

***************************

I also educated myself and was not at all impressed by the

prescribing info.

What really got to me was the total casualness of the " final "

decision to go onto Amiodarone. My AF had got worse and my GP

phoned my Cardio who said " Amiodarone " . I went for a TSH test, had

to ring the surgery reception to get the results which were " normal "

and from there I was supposed to start the loading regime. No way!

No lung, liver or eye tests, no follow-up schedule, no discussion

over my asthma and also an earlier collapsed lung (when I was 26)

and whether amio might be contraindicated.

When I was recently initiated on dofetilide, a statement was made

about amiodarone that " most people have no problem on it, but those

who do have serious problems " . And, I wonder, how many who have " no

problems " actually have amio-related problems - several people on

this board have had their Drs denied their topical problems could

have been caused by Amiodarone.

Another statement was made in 'support' of amiodarone, which was

that " it is part of the Guidelines " (i.e. the Oct 2001 ACC/AHA/ESC

Guidelines on management of AF). But the guidelines make no mention

at all of collateral effects, only seemingly concerned with its

potential beneficial effects.

Of course, all this doesn't even discuss whether the stuff actually

WORKS !! And we know that in many cases it doesn't. And if it

doesn't, you have to wait 3-6 months to get it out of your system.

With this sort of offhandedness in prescribing I am just not at all

surprised that people like you, , and end up losing your

thyroids. Apart from my AF I am basically a fit young 47 year old

[people usually take me for 35-40 :-) ] and what is there in

Amiodarone for me if I end up with a s****ed up thyroid

*and*AF??!!** & ^%$£$%

I have no doubt I will be discussing the possibility of amiodarone

next week at my less-than-successful-dofetilide follow-up. I have

no problem with amiodarone at all - PROVIDED: 1. I can be

guaranteed that its benefits will outweigh its risks; 2. I can be

guaranteed that I don't end up as one of the problem sufferers, be

it eyes, lungs, thyroid, whatever, 3. they have a satisfactory

explanation as to why people become problem cases - e.g. inadequate

monitoring - and a satisfactory corrective proposal, 4. that *I*

am happy with the monitoring regime proposed, 5. that if it doesn't

work I get straight off it, 6. it is only a short-term solution

anyway (prior to ablation, maze, whatever), 7. that it won't mess up

future treatment options (like the recent discussion over lung

problems preventing a mini-maze).

The way I feel now, I am more willing to go under the knife than try

amiodarone for doubtful benefit against significant risks.

I do honestly feel its about time that we as a group with the help

of the other boards started a whispering campaign to warn new

patients of the troubles with this drug. I am not sure how this can

be achieved but the end result should be to force the makers of

Amiodarone to give a better introduction to this treatment, far

better warnings and guidance on how long you can stay on this drug.

I personally find the " What Doctor's Don't Tell You " magazine

sometimes a little unbalanced and even extreme, but I'm sure Lynne

whatsit would champion the dangers of Amiodarone, - see

www.wddty.co.uk (.com?). Gee whiz, with the stuff around about MMR

at present, compare those risks to Amiodarone !

/-rant

Best of health to all,

Vicky London, UK, 1954 model