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In a message dated 2/28/04 10:52:25 AM Eastern Standard Time,

jcowitz@... writes:

i have just had a third a-fib this week, classic paroxysmal afib,

this one with no obvious trigger, and with increasing frequency (1st

was in apr 2001, 2nd was oct 2003 and the 3rd was feb 2004). my

cardiologist wants to put me on amiodarone to reduce chance of

recurrence, stroke, etc. i

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

Jc, what other drugs have you tried for the afib? Having an attack once a

year is very mild and I don't see why the Amiodarone for that? Have you gone

through all the other Calcium channel blockers and Beta blockers already? Your

very young to be starting on Amiodarone so soon unless all else has failed

you? I don't have experience with Amiodarone but IM sure others who have will

be

able to help you out.

a in Massachusetts 49 NSR Toprol XL 100 x 2 Adult Aspirin

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Codling's experience with Amiodarone:

Ellen

(NSR on Dofetilide)

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

Codling wrote:

(snip) There are concerns though as there are serious side effects with

this drug that are being with -held to the unsuspecting user. The one that

comes to mind is Lung fibrosis, or Black lung. This is a serious condition

and there is no reversal to the this once its onset. The first side effect

is when its too late. There are also problems with the eyes and the liver

not to mention the Thyroid gland. Drs tend to give this drug out and then

just leave you on your own. My own GP when giving me this drug, called my

wife and I to the surgery and sat us down and explained what he was giving

me. I can remember his words that Drs dont like giving this drug for more

than Ten years, when I asked why he said well you wont be here.!!!.

Now I can be accused of extremism and alarmist but I have met patients that

are on this drug and are not aware to the serious side effects. I lost my

Thyroid to this drugs and Its a mess trying to get the treatment right for

me. This has been going on now for two years. I would advocate using this

drug as a last resort to get you backing NSR but for a very short period

say no more than Ten years, I also believe its not licensed for AF in the

USA but is for VF not quite sure on that one.

Best regards. C UK

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

----- Original Message -----

(snip) my cardiologist wants to put me on amiodarone to reduce chance of

> recurrence, stroke, etc. i really hate taking drugs especially long

> term at my age (46). i admit i am a little spooked by the whole

> thing. does anyone in the group have any experience with amiodarone

(snip)>

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Codling's experience with Amiodarone:

Ellen

(NSR on Dofetilide)

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

Codling wrote:

(snip) There are concerns though as there are serious side effects with

this drug that are being with -held to the unsuspecting user. The one that

comes to mind is Lung fibrosis, or Black lung. This is a serious condition

and there is no reversal to the this once its onset. The first side effect

is when its too late. There are also problems with the eyes and the liver

not to mention the Thyroid gland. Drs tend to give this drug out and then

just leave you on your own. My own GP when giving me this drug, called my

wife and I to the surgery and sat us down and explained what he was giving

me. I can remember his words that Drs dont like giving this drug for more

than Ten years, when I asked why he said well you wont be here.!!!.

Now I can be accused of extremism and alarmist but I have met patients that

are on this drug and are not aware to the serious side effects. I lost my

Thyroid to this drugs and Its a mess trying to get the treatment right for

me. This has been going on now for two years. I would advocate using this

drug as a last resort to get you backing NSR but for a very short period

say no more than Ten years, I also believe its not licensed for AF in the

USA but is for VF not quite sure on that one.

Best regards. C UK

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

----- Original Message -----

(snip) my cardiologist wants to put me on amiodarone to reduce chance of

> recurrence, stroke, etc. i really hate taking drugs especially long

> term at my age (46). i admit i am a little spooked by the whole

> thing. does anyone in the group have any experience with amiodarone

(snip)>

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Codling's experience with Amiodarone:

Ellen

(NSR on Dofetilide)

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

Codling wrote:

(snip) There are concerns though as there are serious side effects with

this drug that are being with -held to the unsuspecting user. The one that

comes to mind is Lung fibrosis, or Black lung. This is a serious condition

and there is no reversal to the this once its onset. The first side effect

is when its too late. There are also problems with the eyes and the liver

not to mention the Thyroid gland. Drs tend to give this drug out and then

just leave you on your own. My own GP when giving me this drug, called my

wife and I to the surgery and sat us down and explained what he was giving

me. I can remember his words that Drs dont like giving this drug for more

than Ten years, when I asked why he said well you wont be here.!!!.

Now I can be accused of extremism and alarmist but I have met patients that

are on this drug and are not aware to the serious side effects. I lost my

Thyroid to this drugs and Its a mess trying to get the treatment right for

me. This has been going on now for two years. I would advocate using this

drug as a last resort to get you backing NSR but for a very short period

say no more than Ten years, I also believe its not licensed for AF in the

USA but is for VF not quite sure on that one.

Best regards. C UK

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

----- Original Message -----

(snip) my cardiologist wants to put me on amiodarone to reduce chance of

> recurrence, stroke, etc. i really hate taking drugs especially long

> term at my age (46). i admit i am a little spooked by the whole

> thing. does anyone in the group have any experience with amiodarone

(snip)>

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amiodarone

my

cardiologist wants to put me on amiodarone to reduce chance of

recurrence, stroke, etc. i really hate taking drugs especially long

term at my age (46).

AFibber04-I'm hardly an authority but amiodorone is an effective preventive

medication with (for most) no immediate unpleasant side effects. Long term usage

can however result in serious problems up to and including a nasty death by

pulmonary fibrosis and/or liver complications. Your lung and liver functions

will need to be monitored every six months via blood draw and an Xray. I took it

for almost seven years at 200 mg/day and it kept my AF under control until

recently. No noticeable side effects (other than aging 7 years). In December the

200 mg dose no longer worked and I was for a while taking a toxic dose up to

600mg which worked no better and was starting to cause problems.

Amiodorone is cumulatively toxic but has good therapeutic value for AF. I

think the most revealing statement on it is that in the manufacturer's

formulary: There is no evidence that use of this drug extends life.

My and others' experience suggests using it for the grace period in which your

body can tolerate it and then changing to another medication. Let's face it--all

these powerful medicines have some associated dangers.

Shelby

------------------------------------------------------------------------------

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amiodarone

my

cardiologist wants to put me on amiodarone to reduce chance of

recurrence, stroke, etc. i really hate taking drugs especially long

term at my age (46).

AFibber04-I'm hardly an authority but amiodorone is an effective preventive

medication with (for most) no immediate unpleasant side effects. Long term usage

can however result in serious problems up to and including a nasty death by

pulmonary fibrosis and/or liver complications. Your lung and liver functions

will need to be monitored every six months via blood draw and an Xray. I took it

for almost seven years at 200 mg/day and it kept my AF under control until

recently. No noticeable side effects (other than aging 7 years). In December the

200 mg dose no longer worked and I was for a while taking a toxic dose up to

600mg which worked no better and was starting to cause problems.

Amiodorone is cumulatively toxic but has good therapeutic value for AF. I

think the most revealing statement on it is that in the manufacturer's

formulary: There is no evidence that use of this drug extends life.

My and others' experience suggests using it for the grace period in which your

body can tolerate it and then changing to another medication. Let's face it--all

these powerful medicines have some associated dangers.

Shelby

------------------------------------------------------------------------------

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amiodarone

my

cardiologist wants to put me on amiodarone to reduce chance of

recurrence, stroke, etc. i really hate taking drugs especially long

term at my age (46).

AFibber04-I'm hardly an authority but amiodorone is an effective preventive

medication with (for most) no immediate unpleasant side effects. Long term usage

can however result in serious problems up to and including a nasty death by

pulmonary fibrosis and/or liver complications. Your lung and liver functions

will need to be monitored every six months via blood draw and an Xray. I took it

for almost seven years at 200 mg/day and it kept my AF under control until

recently. No noticeable side effects (other than aging 7 years). In December the

200 mg dose no longer worked and I was for a while taking a toxic dose up to

600mg which worked no better and was starting to cause problems.

Amiodorone is cumulatively toxic but has good therapeutic value for AF. I

think the most revealing statement on it is that in the manufacturer's

formulary: There is no evidence that use of this drug extends life.

My and others' experience suggests using it for the grace period in which your

body can tolerate it and then changing to another medication. Let's face it--all

these powerful medicines have some associated dangers.

Shelby

------------------------------------------------------------------------------

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thanx, celtic. i will look into the EP idea. i had not heard of such a

specialist.

>From: celtic8586@...

>Reply-To: AFIBsupport

>To: AFIBsupport

>Subject: Re: amiodarone

>Date: Sat, 28 Feb 2004 16:19:31 EST

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>In a message dated 2/28/04 10:52:18 AM Eastern Standard Time,

>jcowitz@... writes:

>

> > my

> > cardiologist wants to put me on amiodarone to reduce chance of

> > recurrence, stroke, etc. i really hate taking drugs especially long

> > term at my age (46). i admit i am a little spooked by the whole

> >

>

>My first suggestion is to see another cardiologist and or EP. Someone who

>is

>up to date on drug therapies and ablations. Many cardiologists out there

>are

>still stuck in the 50's with their diagnosis. Or just not creative. (A nice

>way

>of saying lazy).

>Your still a young person. Do yourself a big favour and see an EP

>(Electrophysiologist) He or she is a trained heart arrhythmia specialist. A

>heart

>electrician so to speak. Go through our data base and review everthing you

>can. The

>more you know the better off you'll be.

>Rich O

>

>

>

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Guest guest

> I found the below posting on another small Yahoo site I belong to,

> heartarrhythmiasupport

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I also read this posting and the article...I found it interesting

enough to print out and put in my folder. My cardio has mentioned

amiodarone several times as a possibility and I want to be able to

refresh my memory if it comes up again. I have found that by

printing out info on the different drugs it is easier to find when

needed.

By the way, I have lost 15 pounds and find my AF episodes are fewer

and fewer. (fingers crossed & knock on wood) I had gained 30 pounds

after I quit smoking 4 years ago.

Marie Pacific NW flecainide & coumadin

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Guest guest

> I found the below posting on another small Yahoo site I belong to,

> heartarrhythmiasupport

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I also read this posting and the article...I found it interesting

enough to print out and put in my folder. My cardio has mentioned

amiodarone several times as a possibility and I want to be able to

refresh my memory if it comes up again. I have found that by

printing out info on the different drugs it is easier to find when

needed.

By the way, I have lost 15 pounds and find my AF episodes are fewer

and fewer. (fingers crossed & knock on wood) I had gained 30 pounds

after I quit smoking 4 years ago.

Marie Pacific NW flecainide & coumadin

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Guest guest

> I found the below posting on another small Yahoo site I belong to,

> heartarrhythmiasupport

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I also read this posting and the article...I found it interesting

enough to print out and put in my folder. My cardio has mentioned

amiodarone several times as a possibility and I want to be able to

refresh my memory if it comes up again. I have found that by

printing out info on the different drugs it is easier to find when

needed.

By the way, I have lost 15 pounds and find my AF episodes are fewer

and fewer. (fingers crossed & knock on wood) I had gained 30 pounds

after I quit smoking 4 years ago.

Marie Pacific NW flecainide & coumadin

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Guest guest

> I took this info to a cardiologist in PHL. He said that he would

have probably followed the same protocol. Suggested that perhaps if

the amio holds me for the next year, that I could possibly switch

over to another drug to get me off the amio. He also suggested

that bef agreeing to Ablation that I see a EP in the U of Penn.

Faith,

When I was asking around about EP's in the Philly area this name

kept coming up as someone who was very good:

ANDREA M. RUSSO, M.D.

Director, Electrophysiology Laboratory

UPENN

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Guest guest

Thanks, . I'll print this out and keep the name on file. With all the

talk of how bad amio and coumadin are, it's good to know that there's also a

good EP in the area. Hopefully, as I learn more, I'll come to understand A-Fib

better. Faith

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Guest guest

Thanks, . I'll print this out and keep the name on file. With all the

talk of how bad amio and coumadin are, it's good to know that there's also a

good EP in the area. Hopefully, as I learn more, I'll come to understand A-Fib

better. Faith

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  • 1 month later...
Guest guest

I was on amiodarone for 2+ years for AF-

it kept me out of AF indeed

and also got me very sick-

I had severe kidney, vision and thyroid problems.

For me personally, it would never be a drug I would consider again. (thank

goodness at this time I do not need to)

I did develop toxicity from it. And it lives in your body a long time after

you stop it.

I think the worst thing about amiodarone is you don't know how sick you get

from it until it is too late. There are alternatives available but remember

there is really no free lunch with AF.

:-(

-Ronnie

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Guest guest

I was on amiodarone for 2+ years for AF-

it kept me out of AF indeed

and also got me very sick-

I had severe kidney, vision and thyroid problems.

For me personally, it would never be a drug I would consider again. (thank

goodness at this time I do not need to)

I did develop toxicity from it. And it lives in your body a long time after

you stop it.

I think the worst thing about amiodarone is you don't know how sick you get

from it until it is too late. There are alternatives available but remember

there is really no free lunch with AF.

:-(

-Ronnie

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Guest guest

I was on amiodarone for 2+ years for AF-

it kept me out of AF indeed

and also got me very sick-

I had severe kidney, vision and thyroid problems.

For me personally, it would never be a drug I would consider again. (thank

goodness at this time I do not need to)

I did develop toxicity from it. And it lives in your body a long time after

you stop it.

I think the worst thing about amiodarone is you don't know how sick you get

from it until it is too late. There are alternatives available but remember

there is really no free lunch with AF.

:-(

-Ronnie

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This is an excerpt from the EP Cath Digest I received today regarding the off

label use of amiodarne for atrial fibrillation. If anyone wants me to send the

complete article, write to me personally and I will forward it to you.

Loretta

Because of the drug's significant side effects, the FDA approved it only as a

treatment for life-threatening heart conditions called ventricular tachycardia

and ventricular fibrillation, and only as a treatment of last resort after other

drugs have failed.

Yet in the past year doctors wrote nearly 2.3 million prescriptions for

amiodarone to treat atrial fibrillation and other unapproved conditions -

accounting for 82 percent of all amiodarone prescriptions, according to an

exclusive Knight Ridder analysis of drug industry data published last fall.

Throckmorton said patients who take amiodarone should discuss the risks and

benefits of the therapy with their doctors.

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I jwould second that one. I was on this drug for 17 months,

for the first 6 months it got be back from chronic AF to PAF.

boy after that my Asthma went mad, I spent time in Hosptial

as I could not breath, all types of weird side effects to

drugs. It was a living hell.

Now I do believe that with the advent of Dofetilide and the

ablation there is not need to be on this drug, or you should

only take this for 6 months.

Kind regards

C Uk

---- Original message ----

>Date: Sun, 25 Apr 2004 10:25:41 -0400

>

>Subject: Re:amiodarone

>To: AFIBsupport

>

>I was on amiodarone for 2+ years for AF-

>it kept me out of AF indeed

>and also got me very sick-

>I had severe kidney, vision and thyroid problems.

>

>For me personally, it would never be a drug I would consider

again. (thank

>goodness at this time I do not need to)

>I did develop toxicity from it. And it lives in your body a

long time after

>you stop it.

>

>I think the worst thing about amiodarone is you don't know

how sick you get

>from it until it is too late. There are alternatives

available but remember

>there is really no free lunch with AF.

>

>:-(

>

>-Ronnie

>

>

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  • 3 weeks later...
Guest guest

Amiodorone-

It is used for fibbers because it controls a fib very well but often (not

always) at a price. It is not meant to be dispensed for atrial fibrillation

PERIOD!

Think of it this way-

NEURONTIN is a drug that is indicated in those who have seizures. Recently

they discovered it does something with nerve cells and is now used widely

to treat depression. In no way, is NEURONTIN an anti depressant or

indicated for depression.

It's the same kind of thing, in a way. And I bet this is the case for

hundreds, maybe thousands of drugs.

-Ronnie

At 08:10 PM 5/19/2004, you wrote:

>Ronnie,

>

>I would think the fact that the maker of amiodarone

>says it's NOT FOR aFibs would lead cardiologists to

>not prescribe it, so then why are they prescribing it

>when the maker says its not for Afibs? Because it's

>convenient to do?

>

>That said, does anyone who takes it benefit from it at

>all, or how long before they get sick according to the

>dose?

>

>Several people cannot tolerate Sotalol, for example,

>while many more do. Tho it doesnt have the side

>effects of amiodarone.

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Amiodorone-

It is used for fibbers because it controls a fib very well but often (not

always) at a price. It is not meant to be dispensed for atrial fibrillation

PERIOD!

Think of it this way-

NEURONTIN is a drug that is indicated in those who have seizures. Recently

they discovered it does something with nerve cells and is now used widely

to treat depression. In no way, is NEURONTIN an anti depressant or

indicated for depression.

It's the same kind of thing, in a way. And I bet this is the case for

hundreds, maybe thousands of drugs.

-Ronnie

At 08:10 PM 5/19/2004, you wrote:

>Ronnie,

>

>I would think the fact that the maker of amiodarone

>says it's NOT FOR aFibs would lead cardiologists to

>not prescribe it, so then why are they prescribing it

>when the maker says its not for Afibs? Because it's

>convenient to do?

>

>That said, does anyone who takes it benefit from it at

>all, or how long before they get sick according to the

>dose?

>

>Several people cannot tolerate Sotalol, for example,

>while many more do. Tho it doesnt have the side

>effects of amiodarone.

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> Think of it this way-

> NEURONTIN is a drug that is indicated in those who have seizures.

Recently

> they discovered it does something with nerve cells and is now used

widely

> to treat depression. In no way, is NEURONTIN an anti depressant or

> indicated for depression.

>

Actually, I believe there has been some scandal about Neurontin

recently - it does not have a number of the benefits claimed for it.

Just a heads up to anyone who may be taking it.

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  • 1 month later...
Guest guest

In a message dated 7/2/04 7:13:28 AM Eastern Daylight Time,

link@... writes:

> Wow. What a compelling description

You know what concerns me? Cardio's and Cardio EP's who prescribe amiodarone

as the first line of therapy for AF. Over the years on this board, this has

been mentioned many many times. What it tells me is that many Cardio's don't

take AF seriously and are not up to date on AF research and advances. It's kind

of like " take two asprin and call me in two weeks " Next.

It concerns me that people are taking that rat poison, when there are other

choices.

Rich O

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I just received this email from Muccino....

I want to get the word out about the devastating effects of Amiodarone.

All A-Fibbers need to be aware that if they are on Amiodarone they must

watch out for slight symptoms of Amiodarone Induced Pulmonary Toxicity.

My father died. He had a very slight dry cough for about 2-3 months. He

thought it was allergies.

Please read my story and share it with as many people as possible.

Those that are on Amiodarone must insist on having routine chest x-rays

and PFTs.. AND, most of all, if they come down with a cold/cough, they

should seek medical attention immediately.

Thank you for any assistance you can provide in getting my story out.

---------------------------------------------------------------------

Amiodarone is a very dangerous drug. My father, a retired OBGYN, woke up

on January 1 2004, his 69th Birthday, with a temp of 100, general

malaise, and sore throat. Typical symptoms of the cold that was going

around at the Holidays. He stayed in bed and missed his Birthday Party.

He felt a little better on the 2nd. On January 3, our nightmare began as

a family, my Dad was short of breath and thought that he might have

pneumonia. My mom, his wife of 47 years, took him to the urgent care

clinic. He had a Chest X-ray and was immediately admitted to the

Hospital, with an initial dx of bilateral pneumonia. On January 4, he

was transferred to ICU. He did not respond to antibiotics within 24-48

hours, and his Cardiologist and Pulmonologist put their heads together

and feared that he was suffering from Amiodarone Pulmonary Toxicity. He

had a lung bx shortly thereafter that confirmed their dx.

My Dad had been on Amiodarone 200mg qd for 10 months, post oblation for

chronic atrial fibrillation. He had no previously lung disease or

open-heart surgery.

He c/o of a dry cough for 2-3 months. His primary care doctor thought it

was ENT related, and referred him to the ENT. The ENT thought it was GI

related and sent him to GI. He never made it to that appointment, as he

was in ICU.

He was started on steroids within the first couple of days of his

admission, and the amiodarone was dc'd.

My Father had a normal CT scan of the lungs in the middle of Oct.

2003... Just 8 weeks later, fatal lung damage from Amiodarone.

His condition continued to get worse. He was put on a ventilator on

January 18, 2004, which he was unable to tolerate. . He was on high

pressures and developed subcutaneous emphysema, pneumoperitoneum and

pneumopericardium. They changed him to a low tidal volume protocol that

was developed by the ARDS Network His lungs were so severely damaged

that he still was not getting enough O2 to sustain his life. He had to

be put on Vecuronium in order to tolerate settings, which included 35

breaths/minute. 5 Children and a wife of 47 years, watched over him for

49 days, as his condition deteriorated, and Never improved.

The half-life of this drug is so dangerous. Once toxicity was dx, it

didn't matter that the drug was dc'd as it continued to do damage.

Steroids did not improve his condition at all.

It appears that most literature I have read, states concerns with doses

over 300mg/day. Well, here is a case where a patient was only on

200mg/day for 10 months, and ended up with Fatal Pulmonary Toxicity. In

addition, they underplay the need for close monitoring of the lung

status of patients on amiodarone. They absolutely need to come up with a

new protocol, monitoring lung function much more frequently than

q3-6months. A chest x-ray, had it been done even 8 weeks prior to this

event, would not have clued anyone into the fact that he was developing

Pulmonary Toxicity. He had a CT scan, which was Normal.

I feel compelled to write to as many people as possible, to warn against

the dangerous effects of this drug.

My father passed away, after 7 weeks in ICU, on February 20, 2004. He

left behind, 5 broken hearted children, a broken hearted wife, 3 broken

hearted grandchildren, 3 broken hearted sons-in law, and 1 broken

hearted daughter in law.

Please, please, do what ever you can to put stronger warnings out, and

push the drug companies to " red label " prescriptions, " If a cough or flu

symptoms develop, contact your Physician Immediately. These can be signs

of Pulmonary Toxicity, which can be Fatal, if left untreated "

In addition, I think patients should be required to sign a consent form,

notifying them of the warnings.

Further, more needs to be done in the Medical Community to educate

Primary Care Physicians of the severe effects of some drugs.

Red warning labels should be put on the Patients Medical Chart..

We experienced first hand, the very slight symptoms of Amiodarone

Pulmonary Toxicity. My Dad's symptoms went unnoticed by him, a

Physician, as they were so minor. He thought he had developed allergies,

or that our air was too dry, and thus the dry cough. He had no other

symptoms that would have caused any alarm. Just 2 days prior to be

hospitalized he enjoyed a wine tasting gondola cruise through the marina

in Long Beach with his entire family. He was running around, getting in

out of the boat just fine, no Shortness of Breath. I lived with him,

and he presented NO symptoms of concern. He was filled with energy and

life, just 2 days before being hospitalized.

Thank you for the opportunity to write my story. I know that God knows

the minute we are all going to die. However, it doesn't mean that I

can't try and make more people aware of the serious effects of this

drug.

My Dad was a very strong man. He had undergone many procedures and

surgeries throughout his life, related to his DJD, and DDD, prostate,

kidney, etc.. He recovered quickly. That is why this drug is such a

concern.

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Wow. What a compelling description. A friend of mine, also about 69,

went on the drug for what turned out to be 6 months, and was never

monitored " because the time was so short you won't develop serious side

effects " . Turned out nothing terrible happened. But during the course of

treatment he had many complaints, ranging from nightmares to shortness

of breathe, and all of them were ignored. It took months for them to go

away. Thank you and please extend my thanks to .

- OU alum in MI

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