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#1 2004-08-05 06:33:28

Kmuccino
Member
Registered: 2004-08-05
Posts: 2

Amiodarone Induced Pulmonary Toxicity

My father died from Amiodarone Induced Pulmonary Toxicity.  He was put on the medication for chronic atrial fibrillation.  Please read the following story, regarding his case.  In addition, I am on a mission to try and get requirements approved before the drug can be dispensed.  Do you have any idea who I can go to?  I would like to make sure that this never happens again to someone else.  Pharmacies should not be able to dispense the drug without first checking to make sure that the patient has had a baseline Chest X-ray and baseline PFT.  Then, the drug should only be allowed to be dispensed for a 3-month supply.  Then proof must be submitted to the pharmacy that there has been a repeat chest x-ray and PFT prior to dispensing the refill.  In addition, I want to get pharmacies to put a strong "red label" on the bottle, "If you develop any flu like symptoms, or dry cough, contact your Physician immediately.  This may be a warning sign of a severe adverse reaction" Thank you for your help.  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 breathe 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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#2 2004-09-16 03:18:35

gem2965
Member
Registered: 2004-09-16
Posts: 2

Re: Amiodarone Induced Pulmonary Toxicity

I am truly sorry for your loss.
  I received a phone call at work Monday afternoon from my daughter who was at my mothers house. She wanted to know if she should call an ambulance to take mom to the hospital. Mom was running a temp, having pain in her chest, a dry cough, and was having a hard time breathing. ( she has a long history of heart disease) I told my daughter to call 911 and that I would get there as soon as I could. ( I live 4 hours away)  Mom refused to go to the hospital because she has now given up. She was told one month ago that she has Interstitial Fibrosis. A condition caused from taking Amioderone over the last few years. She has had a lot of health problems including pancriatitis that I have just found out could have been caused by taking Amioderone. I took her to her Dr yesterday and we found out that she has a lung infection and that she "may" have 3-5 years left. That is if her heart does not give out before her lungs do.
   The 4 cardiologists that she saw,  her family Dr nor her pharmacy told her of the possibility of her lungs being destroyed because of this drug.  She was also taking 40 mg of Zocor with the Amioderone which I have come to find out can be dangerous. She also was not told to get blood work done every 3 months to check how the Zocor might be affecting her liver. 
  You may want to start by talking to your State Rep. I have contacted a lawyer on Moms behalf to find out what her rights are.
My heart goes out to you and your family.

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#3 2004-09-16 03:36:44

Kmuccino
Member
Registered: 2004-08-05
Posts: 2

Re: Amiodarone Induced Pulmonary Toxicity

Oh my gosh. I am so sorry. Did they take her off of the Amiodarone? The half life is so long, that the drug continues to do damage. The Doctors are giving her 3-4 years. That seems rather optimistic. I am glad to hear that. My Dad only had his very slight cough for 3 months. Woke up one day, having trouble breathing. He was only 69. He thought he had pneumonia.  It is still hard for me to believe he is gone. He was fine just 2-days before he woke up on Jan. 1 and his life changed, and so did ours. You are in my prayers and so is your Mom. How old is she?

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#4 2004-09-16 09:39:57

gem2965
Member
Registered: 2004-09-16
Posts: 2

Re: Amiodarone Induced Pulmonary Toxicity

My mom is 71 years old. She has had a very rough life and what she is going through right now is so wrong. How can she trust ANY Dr. to do right by her now? One time when she went to the emergency room, the Dr she saw told her she was whining and wasting his time. Can you believe that? It is no wonder she has lost her faith in Drs and refuses to go to the hospital. On her last trip to the hospital she saw a Dr she hadn't seen before and he told her she had lung damage and took her off the Amioderone.

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#5 2004-12-18 03:00:20

Guest
Guest

Re: Amiodarone Induced Pulmonary Toxicity

I'm so sorry to hear of the unnecessary passing of your Dad!  Our Dad has been slowly dying for the past 5 3/4 yrs. thanks to having been placed on Cordarone/Amiodarone after having had triple by-pass surgery in Mar. '99.  He was a diabetic before the surgery, but that was under control with oral medication at that time.  Other than a rare case of a cold, Daddy was rarely sick at all, before all this happened.  There is a family history of heart problems, but my Granddad, (his dad), lived to be in his early nineties, and had had 3 heart attacks.  My Granny, (his mom), just recently died, this past Oct. 25.  She was 95! 

My Dad was 69 when all of this began.  Because of shortness of breath, my mom took him to the ER.  He was diagnosed with Congestive Heart Failure and admitted to the hospital for further testing.  The test revealed 3 blocked arteries, 2 of which were 99% blocked.  We were told that he was a walking, ticking time bomb.  That he could have a massive coronary at any time.  He had the triple by-pass surgery, and when the surgeon came out after it was over to talk with our family, he told us that Daddy had had some atri-fibs and that he had put him on a terrific drug called cordorone, and that he had done fine other than that and was expected to leave the hospital within a couple of days.  The next day we had trouble getting Daddy to wake up and open his eyes.  He would say that he was awake, but wouldn't open his eyes and keep them open.  He said that he couldn't swallow his pills and wouldn't eat anything but soft mushy foods.  He then started vomiting.  They thought that he'd possibly had a stroke and started treating him for that.  He had to have a feeding tube inserted for a couple of weeks.  He also developed a severe sensitivity to light.  They only light he would allow on in the room was the TV.  They thought that the Digoxin they had him on also may have been causing a problem, because his mom couldn't tolerate it.  When things didn't improve, they put him back on the Digoxin because they said he needed it.  Three weeks later, he improved enough that they let him come home.  I was the one that would take them to their Dr. appts., so after several weeks of seeing him slowly deteriorating.  I snuck back in to see his Dr. and told him that something was wrong, that we were still having to help him get a shower, and that our Dad was a very private person, and didn't like to have to have us doing that for him, but he would act like things were OK when he'd talk with the Dr.  The Dr. told me that we were babying him and that we should stop it!  I told him that he didn't know what he was talking about, that he wasn't with him 24/7 and that something was definately wrong.  He told me that he had other patients to see and that I needed to leave his office.  I was furious and told my parents what I'd done, and what the Dr. had said.  I told them that I wanted to get them out of there, but they were concerned about their records, and were afraid that they might get misplaced if he changed hospitals.  On June 30, '99 (3 mos. after 1st being administered Cordarone/Amiodarone) our Dad was re-admitted to the hospital.  This was our youngest sons 3rd birthday, so needless to say it wasn't a very happy one!  Daddy was having some shortness of breath again, but within a couple of days he got considerably worse.  He couldn't even stand up beside the hospital bed and pee in the urinal without gasping for breath!  The cardiac surgeon was called in again to make sure that the by-passes had taken.  They were fine, so he called in his personal pulmonary Dr.  That Dr. came in the next day and told us that he had been taken off the Cordarone/Amiodarone, that it had given him Pulmonary Fibrosis, and unfortunately that even though it'd been stopped, it could take from 6 mos. to a year to work it's way out of his system, and that it would continue to do damage.  He was put on steroids as well.  He is still on them to this very day!  He is down to 5 mg., however, every time he tries to get completely off, his lungs fill with excessive fluid that has to be drained off with a large needle.  He also had to have a pacemaker put in in Dec. '99.  The battery on that one was beginning to fail at the end of last year, so Dec. 1, '03 he was given a so called "cadillac" of pacemaker/defibrillators.  He hasn't improved at all!  It has been a constant "roller coaster ride" for nearly 6 yrs. now!  At times we thought he was improving, but then just as quickly he takes a downhill plunge!  We sought the help of a lawyer about 3 yrs. ago, not to try and make a killing of $$, but just to try and get the word out about the EXTREME DANGER of this TOXIC/FATAL drug!  At that time my Dad wasn't in a wheelchair, he was barely walking with a cane, and off his oxygen at that time, so the lawyer told us that since it didn't KILL him or because he wasn't in a wheelchair, that there was very little he could do for us unless we wanted to shell out thousands of dollars for research and etc.  We are looking for a "Class Action Suit" to become involved in against this drug!  We agree 100% with you!  The word has got to be heard before anyone else has to suffer as our loved ones and our families have had to! 

May God bless and comfort your family!  You all will be in our prayers!

Sincerely,
TooToo sad

 

#6 2005-12-28 15:40:19

Kim Norton
Member
Registered: 2005-12-28
Posts: 1

Re: Amiodarone Induced Pulmonary Toxicity

This is in response to those with loved ones who took Amiodarone and died or are very sick.  My father died on 11/5/05.  (He began the drug 11/13/02, was taken off of it 12/5/03, diagnosed with IPF.  Memorial service ironically was 11/13/05.)  He also had five children and a wife of 44 years.  He was 66, suffered greatly, had a rough life to begin with, and all of us are not only devastated by his loss, but angry at the drug companies and doctors who allowed this to happen to him.  Has anyone had any success with lawyers or publicity to get the word out about this drug?  I want to do something that will matter to stop these people.  I do have a lawyer for the drug company.  My father initiated that, but we are still waiting.

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#7 2009-01-24 19:19:20

missmymom
Member
Registered: 2009-01-24
Posts: 2

Re: Amiodarone Induced Pulmonary Toxicity

My mother died jan. 16th 2009 of Amiodarone induced Pulmonaery Toxicity. She was 84 years old.  She was an independent living senior still driving her car and self-sufficient. The suffering she endured broke our hearts.  It began with a heart out of rhythm.  She was hospitalized and given cordorone by IV. She was sent home on coumidan and cordorone in addition to her other two high- blood pressure pills. She seemed confused about her pill taking directions.  Coumidan is a drug which requires diligence. We have learned that it is not a good drug to take with cordorone. Cordorone magnifies everything and makes it stronger. The coumidane levels were always too high.  She was a fall risk now due to the danger of excessive bleeding and she suddendly seemed very stumbly and unsteady.  She fell and cut her finger requireing stitches.  But worst of all was the cough.  She coughed alot.  She thought she picked up a cold in the hospital.  Her cough was productive at first, then turned dry.  She drove herself to urgent care, where a chest x-ray revealed a terrible pneumonia.  She was given a antibiotic to fill.  My sister and husband arrived the next day and as my Mom was worsening took her to er. She was admitted , she was in a room for almost two weeks.  She took many antibiotics and had numorous  breathing treatments. Her cardiologist told her it was the worst pnumonia he had ever seen! The respitory therapist could'nt understand the persistant cough.  Her heart started to have a-fib's ( due to the severe coughing) so the cardiologist upped her dose of cordorone to an IV . At this point she was feeling much better and was scheldued for re-hab where she could regain strength. She still seemed confused though. Suddendly she developed a stratchy throat and hours later was in respitory distress.  My sister and I arrived to find her scared and gasping for breath. The put her on a ventlilator and she died 8 days later.  Her lungs had crystalized. They could no longer absorb oxygen. This drug is criminally toxic.  She was only on it for 8 weeks! She was never warned that she should watch out for flu like symtoms etc. This drug needs warnings and medical personnel need to be educated on it's very toxic. effects. Signed, a brokenhearted family  we still arent't sure if she ever had pnumonia!

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