Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 > I just received this email from Muccino.... > > I want to get the word out about the devastating effects of Amiodarone. > Hi , Thank you so much for passing along this sad, cautionary tale from . I absolutely refused to go on amiodarone when my EP suggested it (must be a year, or more, ago now) even though I continue to be symptomatic with AFIB. My Dad died of chronic bronchitis and emphysema and I just couldn't see myself taking a drug that could cause permanent lung damage. As I understand, this drug was never intended to be prescribed for ABIB. Also, if you are in your eighties you may be more willing to take this drug for symptomatic relief than if you are in your fifties or younger. The younger you are when you start it the more time for it to build up in the body. By the way, off topic I know, how is the weather in Yorkshire these days? I wouldn't mind a nice walk throuh Malham Cove about now! Here in Eastern Canada the weather has been unseasonably cold and damp, blah! Germaine Canada propafenone, atenolol, warfarin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Guys, I have been banging my head against the the wall for this particular drug, SIMPLY ITS DANGERIOUS. I know its messed up my Thyroid and boy am I paying for in now is Money and stress. take care. I wonder if we can put a warning banner on the site about this drug but in hind site we may upset the drug companies. JC ---- Original message ---- >Date: Fri, 02 Jul 2004 11:37:59 +0100 > >Subject: Fwd: amiodarone >To: AFibSupport <AFIBsupport > > >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. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 > I just received this email from Muccino.... > > I want to get the word out about the devastating effects of Amiodarone. Yet another Amiodarone horror story. How many does it take? Is there ever an occasion where this is the only drug that will help? Afib itself, it seems to me, is not as dangerous as this drug. Why shouldn't it be taken off the market at least for use with Afib? I'm sure someone will have a reason, but I can't imagine a circumstance where I'd take Amiodarone for my afib. Fortunately, right now I don't have to worry about that as I close in on 2 months in nsr after my flutter ablation. Ed in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 > I just received this email from Muccino.... > > I want to get the word out about the devastating effects of Amiodarone. Yet another Amiodarone horror story. How many does it take? Is there ever an occasion where this is the only drug that will help? Afib itself, it seems to me, is not as dangerous as this drug. Why shouldn't it be taken off the market at least for use with Afib? I'm sure someone will have a reason, but I can't imagine a circumstance where I'd take Amiodarone for my afib. Fortunately, right now I don't have to worry about that as I close in on 2 months in nsr after my flutter ablation. Ed in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 > P > > How long were you on Amiodarone and what side effects did you have? > Why did you go off of it. I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off > of it now but I wonder if my eyes will get better. , I believe it takes months for amiodarone to get out of your system. (Did someone say 6-8 months?) So I wouldn't give up on an improvement before then. Also, not to let amiodaroDONT off the hook :-) but are you nearing 40? Night be middle-aged vision changes if so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 > P > > How long were you on Amiodarone and what side effects did you have? > Why did you go off of it. I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off > of it now but I wonder if my eyes will get better. , I believe it takes months for amiodarone to get out of your system. (Did someone say 6-8 months?) So I wouldn't give up on an improvement before then. Also, not to let amiodaroDONT off the hook :-) but are you nearing 40? Night be middle-aged vision changes if so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 > P > > How long were you on Amiodarone and what side effects did you have? > Why did you go off of it. I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off > of it now but I wonder if my eyes will get better. , I believe it takes months for amiodarone to get out of your system. (Did someone say 6-8 months?) So I wouldn't give up on an improvement before then. Also, not to let amiodaroDONT off the hook :-) but are you nearing 40? Night be middle-aged vision changes if so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 > How long were you on Amiodarone and what side effects did you have? > Why did you go off of it. I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off > of it now but I wonder if my eyes will get better. I would advise everyone > never to take that drug. Now I have to find another medicine. Right now > I;m on Lanoxin and Toprol but I don't think that's enough. > > from Pittsburgh ....................................................................... I was on the Ami 200mg's for about two years with no problems and then my thyroid became overactive. The dose was reduced to 100 mg's and the thyroid problem straightened out but the 100 mg dose wasn't high enough to keep me in rhythm. I went off of it for six months and tried sotalol which didn't work. I'm now back on the Ami and have been in NSR for some time now. I will be having my second set of tests done in a couple of weeks to see if everything's OK. I don't like taking it but I sure do like being in NSR. P <MI> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 > How long were you on Amiodarone and what side effects did you have? > Why did you go off of it. I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off > of it now but I wonder if my eyes will get better. I would advise everyone > never to take that drug. Now I have to find another medicine. Right now > I;m on Lanoxin and Toprol but I don't think that's enough. > > from Pittsburgh ....................................................................... I was on the Ami 200mg's for about two years with no problems and then my thyroid became overactive. The dose was reduced to 100 mg's and the thyroid problem straightened out but the 100 mg dose wasn't high enough to keep me in rhythm. I went off of it for six months and tried sotalol which didn't work. I'm now back on the Ami and have been in NSR for some time now. I will be having my second set of tests done in a couple of weeks to see if everything's OK. I don't like taking it but I sure do like being in NSR. P <MI> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 > How long were you on Amiodarone and what side effects did you have? > Why did you go off of it. I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off > of it now but I wonder if my eyes will get better. I would advise everyone > never to take that drug. Now I have to find another medicine. Right now > I;m on Lanoxin and Toprol but I don't think that's enough. > > from Pittsburgh ....................................................................... I was on the Ami 200mg's for about two years with no problems and then my thyroid became overactive. The dose was reduced to 100 mg's and the thyroid problem straightened out but the 100 mg dose wasn't high enough to keep me in rhythm. I went off of it for six months and tried sotalol which didn't work. I'm now back on the Ami and have been in NSR for some time now. I will be having my second set of tests done in a couple of weeks to see if everything's OK. I don't like taking it but I sure do like being in NSR. P <MI> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 > P > > <snip> I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off of it now but I wonder if my eyes will get better. <snip> Hi, I have taken amiodarone for 2 years as it is the only drug that has kept me in NSR. I know from speaking to my opthamologist that it takes more than 6 weeks for the deposits to begin to show up on your eyes. He was involved in the initial testing of amiodarone and its effect on your eyes and told me that he had never seen anyone with deposits that affected their visions. He also said they do go away over time after you stop using amiodarone. Your best way to make sure there is nothing wrong due to the amiodarone is to see an opthamologist. Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 > P > > <snip> I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off of it now but I wonder if my eyes will get better. <snip> Hi, I have taken amiodarone for 2 years as it is the only drug that has kept me in NSR. I know from speaking to my opthamologist that it takes more than 6 weeks for the deposits to begin to show up on your eyes. He was involved in the initial testing of amiodarone and its effect on your eyes and told me that he had never seen anyone with deposits that affected their visions. He also said they do go away over time after you stop using amiodarone. Your best way to make sure there is nothing wrong due to the amiodarone is to see an opthamologist. Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 > P > > <snip> I was on Amiodarone for six weeks and my eyes > were bothering me. I still can't see for reading as I did before. I'm off of it now but I wonder if my eyes will get better. <snip> Hi, I have taken amiodarone for 2 years as it is the only drug that has kept me in NSR. I know from speaking to my opthamologist that it takes more than 6 weeks for the deposits to begin to show up on your eyes. He was involved in the initial testing of amiodarone and its effect on your eyes and told me that he had never seen anyone with deposits that affected their visions. He also said they do go away over time after you stop using amiodarone. Your best way to make sure there is nothing wrong due to the amiodarone is to see an opthamologist. Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 > I have taken amiodarone for 2 years as it is the only drug that has > kept me in NSR. I know from speaking to my opthamologist that it > takes more than 6 weeks for the deposits to begin to show up on your > eyes. He was involved in the initial testing of amiodarone and its > effect on your eyes and told me that he had never seen anyone with > deposits that affected their visions. He also said they do go away > over time after you stop using amiodarone. > Beverly ........................................... Thanks for the info. I guess the trouble I've been having lately reading fine print might just mean I need to get those dreaded bifocals. P <MI> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 > I have taken amiodarone for 2 years as it is the only drug that has > kept me in NSR. I know from speaking to my opthamologist that it > takes more than 6 weeks for the deposits to begin to show up on your > eyes. He was involved in the initial testing of amiodarone and its > effect on your eyes and told me that he had never seen anyone with > deposits that affected their visions. He also said they do go away > over time after you stop using amiodarone. > Beverly ........................................... Thanks for the info. I guess the trouble I've been having lately reading fine print might just mean I need to get those dreaded bifocals. P <MI> Quote Link to comment Share on other sites More sharing options...
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