Our Stories Please take a moment to read one of the profiles of people who have experienced Amiodarone side effects. Alan Sandra L. Wagner Ruth Ken Miller M.R. “Red” Akin Frank Lynch Douglas G. Patrias Jennifer’s GrandPa Daddy’s Story (Walter E. Maher) Donald Cote’s Story (by Megan Cote Baer) Garry Hempstead Donald A. Compretta Noel Griese Garrett Mounts Toxicity Henry Martin My 84 Year Old Husband George Smith Sally’s Story Frederick M. Reed Christine Shirley Klaus Jergen Glaser Anna Struk Twyla’s Dad 36 Comments Newer Comments » Martha Chinese medicine..name please March 31, 2013 Reply Susan I was diagnosed with paroxymal afib at 58. I also had htn and on diuretic. After 3 mos of attacks several times a day I reluctantly started amiodarone . After. 2 days I stopped. I then began my own research. I followed all the traditional western suggestions but also went to an acupuncturist and after 2 treatments along with following diet recommendstions my afib completely ended. I also took chinese formula for my high bp and after 5 years of trying meds with side effects my bp was controlled with no side effects and a cost of $12.00 a month. I realize we are all different but it is good to explore All options. January 27, 2013 Reply StopAmiodarone Thank you for sharing your experience and I'm glad to hear that you were able to find a solution. In order to help others, was there a book or website that you would like to mention to get them started? January 28, 2013 Reply Martha what is the name ? March 31, 2013 Reply StopAmiodarone Josephine, I am so sorry to hear that your mother has suffered the fatal effects of amiodarone. It really is a crime that this drug is prescribed so freely and patients don't realize the devastating results it can have. I'm glad you found the site and I hope you will work with us to stop the use of amiodarone. Please consider signing the petition we have at change.org: https://www.change.org/petitions/fda-and-congress… ~Susan December 30, 2012 Reply Josephine My mom just passed from aminodarone on Dec. 18th. I can't believe all this has happened. We need to fight this drug off the shelf. December 28, 2012 Reply Lisa D I am so glad to have found this site. My 75 year old dad suffered a mild heart attack 5 weeks ago and underwent an emergency angioplasty over in Michigan (we're in Canada). He was prescribed "heart meds" while he was there, but within a few days he developed pneumonia. They sent him back to Canada for follow up care with a round of antibiotics all the while having to be on oxygen 24/7. Once the first round of antibio's were done he developed another type of pneumonia with another round of antibio's. None of this seemed to be helping and his lungs were getting worse so they started corticosteroids. We saw some improvement with the steroids but then one day he was flat out with a C. difficile infection and had to be taken off the steroids. The lungs have become so bad that today (5 weeks in) they were thinking of moving him to ICU on a ventillator but are holding off on that move. We learned today that the "heart meds" were Amiodarone but we have no idea how long he was given them, the Dr's are never around. He is now back on steroids as they are at least acknowledging that this is probably due to the Amiodarone. His lung function is so bad he can barely catch his breath and can only leave the oxygen mask off for seconds before the levels drop dangerously low. It breaks my heart to see him like this. I can't believe they are still using this drug. Please keep us in your thoughts and prayers, it's a waiting game for here…. August 17, 2012 Reply Susan To get your story on this site, please email what you would like to have posted along with a picture to firstname.lastname@example.org Thank you! March 5, 2012 Reply amiokills Can anyone tell me how to post a story about my Dad here? Thank you. February 5, 2012 Reply Madness Go to STOP AMIODARONE on Facebook! Post away! June 3, 2013 Reply Susan Terri, I am sorry to hear that your husband has been so ill. I hope that he is showing signs of improvement now that he is off of the amiodarone. I too don't understand why doctors prescribe a drug that should be reserved for only life threatening ventricular arrhythmia and on top of that don't recognize when the drug is becoming toxic in the patient. I'm glad someone on your husband's medical team spotted the problem and got him off of the drug. Please keep us posted on his progress. @Terri November 13, 2011 Reply Terri Three weeks after my husband's emergency triple bypass and shortness of breath getting worse everyday…finally the Pulmonologist said stop the Amiodarone immediately! Why weren't the Surgeon & Cardiologist aware of this side effect? We've been complaining that the shortness of breath was getting worse. I don't understand why they put him on Amiodarone in the first place (he had 2 very short, almost negligible arrhythmias while in the hospital)and then allowed him to continue it while complaining that he couldn't catch his breath. November 12, 2011 Reply Susan @Doris Doris, I am so sorry to hear of your loss. It's truly heartbreaking the pain and suffering people go through as a result of taking this drug. Why do doctors continue to prescribe it? Because the pharmaceutical companies tell them it's the most effective approach and doctors don't look any further. Our goal with this website and the Facebook group, Stop Amiodarone, is to raise awareness to the devastating side effects of amiodarone. The FDA approved this drug as a drug of last resort and that is really the only way it should ever be used. Hopefully, someday the medical community will wake up to this fact and stop the pain and suffering that amiodarone causes. Thank you for taking the time to comment here and I hope you will join us on Facebook too. My thoughts are with you. Susan October 2, 2011 Reply Doris My brother passed away yesterday after taking this drug for only several weeks. The doctors were aware that he had a mild case of asbestos but he was given the drug anyway. HE TOLD ME THAT IF HE HAD KNOWN THE SIDE EFFECTS OF THE DRUG HE WOULD NOT HAVE TAKEN IT. He died an awful death in so much pain that at the end he was asking to leave us. Why aren't doctors more aware of the side effects and why are they giving it to someone who already has an underlying lung ailment? October 1, 2011 Reply hempsteadjb MZPearl, yes it's that DEADLY. Killed my husband in 4 months! He was 56 and taking 200mg per day for AFIB. He stayed on a vent most of the 57 days he was in the ICU unit. Can you go to the ER with your complaints? Have them do a CT Scan of your lungs…I don't think they can turn you away if you go to the ER because of lack of insurance. Also, if you are hospitalized you can have the Social Worker at the hospital help you with the Social Security Disibility; I have known some to get approved while in the hospital (for some reason they get approved faster) Be sure and ask them to test you for Amiodarone Lung Toxicity and have them do the Thyroid and Liver Tests. Please keep all of us posted on your condition! @mzpearl303 August 18, 2011 Reply Susan Thank you for sharing your experience. I am not a doctor but I don't think it takes one to tell you that it sounds like you are having a reaction to the drug. The cough is a classic symptom. I would get to a doctor and get off of the drug ASAP. Can I suggest that you join the discussion on Facebook? Log in and search for Stop Amiodarone. I'll be thinking of you…please stay in touch.@mzpearl303 August 18, 2011 Reply mzpearl303 I am currently taking amiodarone 200mg daily,age 41 I've tried to other heart meds that haven't worked, I've being on amiodarone for 2 months and here I go again all my pvc's back and my heart rate has gone down just like before,I'm running in the 40's. I'm suppose to see another specialist down in Ann Arbor,Mi Sept.30 but that's 6 wks. away–I feel exhausted,I feel I'm going down hill again–the side affects I've had so far is a daily cough that I never had before and very vivid dreams/nightmares and still tired and occassional numbness in my left arm/shoulder–been trying to figure out what's wrong and if this medication is any good for me I have a cardiologist and a heart rythm specialist and soon I'll be adding to my list another specialist-can't go back to work as of right now, having alot of dizzy spells-have a doctors note for that,have applied for unemployment,they won't give it to me because I can't work and have applied for ssi and disability –I have no insurance, can't even get medicaid because I'm not blind and not 65 or older—unbelievable!!But, anyways is this medicine that deadly?????? August 17, 2011 Reply Justin L. Williams Thanks to all of you and to Marla and susan for working on this board. I know some on boards have spoken about lawyers not taking amiodarone cases and the problems you have faced having anyone represent you. I will tell you that the law is not in favor of victims of drug companies or of an unusual drug like amiodarone. Having said that i currently represent two clients who suffer from amiodarone toxicity. I am in the process of filing suit on their behalf. My clients who suffer from amiodarone toxicity and who have pulmanary fibrosis are being filed as individual cases. I am also speaking with a New York city class action firm to file a class action on behalf of those who are not yet as injured. I am an experienced lawyer who was diagnosed with pancreatic cancer in 2008 and had a whipple operation at M.D. Anderson. I have joined a firm in my hometown and have the ability to fight this fight. I would love to hear from any of you who want to fight this fight. it will not be easy but i will fight it with you and I assure you it is not as big a fight as pancreatic cancer. My email is Justin@hmglawfirm.com, Best to all, my prayers are with all of you, Justin L. Williams January 25, 2011 Reply Marla @Ralph from Mesa, Arizona Ralph–I know your experience from the Topix board, here and FaceBook. Won't you please write it up, send your photo and post here? We really need for there to be HUNDREDS of victim stories up so that people logging onto this website will know just how widespread the dangers of amiodarone toxicity are. If you would like for me or Susan to help, we both stand ready. Susan can be reached through the CONTACT link at top right, and she can forward emails on to me if she is busy. Because you are speaking from first-hand experience and luckily did not die from this terrible drug, your story will be especially powerful and useful. Best wishes, and stay strong! September 20, 2010 Reply Mary My family also has suffered the horrible adverse effects of amiodarone. My mother was given the drug for afib Sept 2010. Multilple trips were made to her doctors complaing of increasing weakness and shortness of breath. I believe because of her age her symptoms were ignored. She was officially diagnosed with pulmonary fibrosis caused by amiodarone toxcity May 10th she died a very horrible sad death in May 31st of 2010.We need to get the message out there somehow. I am very sad for everyone that has experienced the adverse effects of this horrible drug. September 19, 2010 Reply Ralph from Mesa, Ari To all that read this. I was on Amiodarone 200 mg a day for 12 years. I have written proof that the drug caused Amiodarone Toxicity and Pulllmonary Fibrosis. I am on oxygen 24/7. What has kept me alive is a therapy program of exercise and diet. I am 84 years old in if it were not for the Amiodarone Toxicity, I might live to 100. If you have atrial fib or an irrigular heartbeat, inquire about a pace maker. I finally convinced my heart specialist to put one in me and stop all the meds. Some of the meds I was taking almost killed me a few times. Now my heart beats a beautiful 70 b/p/m, no side effects and NO COUMADIN, just aspirin once a day. Sometimes you have to tell the doctor what you know is best for YOUR BODY! I have written to the FDA, ARPA and a few more and have not heard back from ANYONE! I wonder who is supporting whom? Ralph from Mesa Arizona September 18, 2010 Reply Mary Seres Marla, I know and feel what you went thru. I think had they told my mother or me what were the symptoms to watch for with this medication atleast we might have had a chance but when I called the Costco Pharmacy and ask them why they hadn't put any WARNING labels on the bottles of Amiodarone they said that none were required. Considering how the FDA drug it's feet and how doctors are ignoring those warnings it makes me wonder, ae the doctor's getting kick backs from this drug? For a medication only to be given after all other medications for this problem have been tried and failed and they jump to the head of the line and give this one first makes no sense at all, no to mention the protocol for putting someone on this medication. My heart goes out to you Marla and your family. My mother has been gone since June of 2008 and I still miss her deeply. Mary S, California September 2, 2010 Reply Susan Marla…thank you for sharing your experience and I am so sorry to hear all that you have been through. In this day and age, it's hard to believe that things of this magnitude could be missed but I'm here to tell you that it does happen with this drug all the time. Along with you, I've lived it. What is truly amazing in your case it that the doctors had just had the experience of an associate dying of a very similar cause. You would think this past experience would have given them reason to get up to speed with this drug but I guess not. Your experience and all of those I've been reading on the FaceBook Page "Stop Amiodarone" convince me that we need to work to make the public/doctors aware of what this drug can do. Thank you again…Susan August 25, 2010 Reply Jody Godfrey It has nothing to do with “awareness” and everything to do with “kickbacks.” They need to let the saying “You can’t fix greedy!” trump “You can’t fix stupid!” The average patient is like a “lamb to the slaughter.” Most who are having to undergo CABG procedure is under emergency conditions…it’s not like you have time to sit down and ask the doctor what drugs are normally prescribed for the patient after the procedure…not certain they would be totally honest with us anyway…until my mother had this done, I had never heard of this drug…GO FACEBOOK!!!!! September 6, 2013 Reply Newer Comments » Add a Comment Cancel reply Your email address will not be published. Required fields are marked *Comment:*Name:* Email Address:* Website: Notify me of new posts by email.