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Let’s Stop This Drug Before It Stops One More Person…

Sadly, my father died 7 years ago as a result of Amiodarone.  Thinking our family was alone in having this tragedy befall us, I didn’t look for others that may have had the same experience.  With the advent of “social media” and the ability of users to comment in forums like Topix, I learned that my father’s experience was not an isolated incidence.  Indeed, there are many similarities in how the drug was prescribed, how his symptoms were treated, and, of course, the ultimate conclusion…his death.  I’ve also learned that many people are suffering from debilitating effects of the drug.  Many  people are looking for information and help coping with Amiodarone in their life.

This website is an attempt to bring people and information regarding Amiodarone together in one place.  It would help our cause if we could band together and  let the FDA and other regulatory agencies know what suffering is occurring as a result of Amiodarone.  My goal is to have this be the place.

I hope that you will continue to return to this site, post comments,  refer others to it, and even maybe contribute to it.

You may contact me through this site or email me at stopamiodarone@gmail.com.


20 Responses

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  1. Elwin H Page says

    Hi! to all. My name is Elwin. I have been on Amioadarone, for about 19 months, after a quadruple by pass. Recently reviewed data that came with the filled prescription, can’t believe the side effects possible. I am scared, and I am going to stop, taking them. I don’t know if one should ween off, or just stop. I have what I believe to be at this time very mild symptoms. Any advice as to ween or just stop?

  2. sandy says

    Get off and get on Sotalol. It’s a kinder medication. I was on amiodarone for 2 years. It kept me from living.

  3. Patricia Slye says

    I have just stopped taking amiodarone just shy of being on it for 3 months for afib. It has already scarred my lungs. I have trouble breathing when walking more than a few steps. I live along and this makes my life very difficult. I can no longer work in my gardens, etc.

  4. Mary Mongrain says

    I have been on amiodarone for a year and a half. I was having weird dreams which were not like nightmares, or regular dreams. I didn’t catch on until I had one terrible experience with hallucinations. I stopped taking the amiodarone. One physician said it did not cause hallucinations. I have been reading up on the different pages. Hallucinations is one of side-effects. In fact it looks to me like there are more side affects than there are medical reasons for taking it. Have to wait for my cardiologist to come back from vacation. see what he has to say. I will not go back on it. Take my chances with fibrillation.

  5. Heather Koch says

    Currently my grandmother is hospitalized due to amiodarone. I am looking also for avenues to pursue, in order to have this killer drug taken off the market. I have done my research on the criteria a new drug must meet in order to pass through FDA regulations. Seeing that my grandmother had 33 of the listed side effects, taken also in account that the listed side effects were also larger than just the 33 she had, I can not understand how this passed through with FDA approval. Any and all help would be appreciated. Currently she has been in 3 different hospitals over the course of almost 3 months, trying to survive from the toxicity that amiodarone has done to her. She is not out of the woods yet, but since we have asked The Lord to heal her she has made much improvement. I’ve been on other sites trying to find others to help me fight the FDA to get this off the market, but haven’t found anyone who will actually help. Most just like to share their stories and talk about it, I am ready to take the FDA head on. Any and all help would be great! Thanks

  6. Marilyn Peters says

    My husband died Oct. 12, 2007, from the side effects of Amiodarone. He was placed on the drug for A-fib. He had not felt right from the very beginning, but they kept changing his blood pressure medicine. He was not monitored properly, and within 7 months, he was diagnosed with pneumonia. and given antibiotics. This should have been a red flag for the doctor. He finally had to be hospitalized and place on prednisone for six months. Even after he was taken off the prednisone, the drug continued to damage the lungs. X-rays taken before and after confirmed this. I filed a complaint in writing and on-line with the FDA to no avail. I received a canned response.. This is a very dangerous drug and is continually be prescribed off label for A-fib.

  7. Rheba Calton says

    So what exactly is this drug prescribed for? IS it used as a last resort? Do it’s benefits outweigh it’s risks? How sick are the people for whom it is prescribed? I know there are side effects of all drugs that one can take and interactions with other drugs that are taken also. No drug is without side effects and most of the time we can check what those are out. Our looking in a PDR is not going to make us more knowledgable than our doctors. It will only inform us of all possible side effects that maybe we weren’t told about and we can discuss these with our doctors who deal with these issues everyday. If you look hard enough a lawyer can find something to file civil lawsuits about for everything. But does that make it right to jump on the bandwagon of lawsuits? We do too much of that in our country as it is and it’s one thing that disgusts me about lawyers and our society today!

  8. Vera says

    My husband is in the hospital right now, beginning amiodarone. I’m very frightened but his doc recommends it and he thinks it’s his miracle. Any advice?

  9. Susan says

    Dody, I am so sorry to hear about the loss of your father. It’s always difficult to see a loved one pass and it’s especially tragic when the cause of death is preventable.

    There is a class action lawsuit forming. Justin Williams is the lawyer and here is his email: jlwilliams@cce-vic.com

    Also, please join the conversation on Facebook…search for Stop Amiodarone and join the group.
    You’ll find many people that are coping with the devastating effects of amiodarone.

    Thank you for posting.
    ~Susan
    @dorothy barrett

  10. dorothy barrett says

    I don't see any recent posts. Is this still an active site? My dad died of amiodarone-induced lung toxicity in March 2012. I am interested in talking with others who've lost a parent, spouse or other loved one to this deadly drug. Dody Barrett Vermont

  11. valeriegrogers says

    I have stopped amiodarone when a CAT SCAN lit up the kidneys…possible amiodarone toxicity. My cardio told me to stop (already have hypothyroidism and kidney disease). In 4 months my liver improved by 50%! Wow. Now I find I am coughing in the morning…thick mucus but only in morning. Has anyone had that problem?

  12. Marla says

    @Marla

    Oh, the web page Susan found:

    http://www.ajsmidi.com/geocox/index.htm

    Frankly, I am astounded that she unearthed this. I have Googled and searched in every way possible for months about amiodarone toxicity and never found this site, which references not only the investigative journalist, but Knight Ridder news stories and a big story in the Chicago Tribune! Great detective work, Susan.

  13. Marla says

    @Jan Miller

    Jan–Susan has found an amazing site online that documents (although difficult to read and follow it entirely) a previous inquiry via Freedom/Info Act with the FDA about amiodarone deaths. She is trying now to track down the journalist cited on the web page as someone who was going to do an investigative report on the drug. This was all at least 5 years ago, but still a good lead. If you have a family story, please post it on the MEET AN AMIODARONE VICTIM section of the website–we need more stories up there b'c they make it clear just how insidious this drug can be, and how reluctant to diagnose many doctors are. Power in numbers. Susan or I can help you with writing or editing it if you want, just ask through the CONTACT link above right.

  14. Jan Miller says

    I think if we all file those FDA medwatch complaints and Susan uses Freedom of Information Act request to see how many there are – then hopefully we will have some info on numbers. Not how many are affected – I think there's a large number of people impacted by Amiodarone that we don't know about and they don't know about us. How do we get to them? Again I want to say thank you, bless you, Susan, for doing the sight and helping.

  15. Susan says

    Hi Jan!

    I called the FDA this a.m. Basically, there is no such thing as a group complaint. The person at the FDA encouraged us to all fill out a MedWatch form. I asked if maybe a hospital would fill out a MedWatch report in the instance of a death. She said no. The only entity required to fill complaint is the drug company when they learn of a side effect. It's kind of like the fox watching the hen house wouldn't you say?

    I asked if there was a way to learn the statistics on this drug (i.e. how many people are complaining). She said that I need to fill out a Freedom of Information Act request in writing to get that information. I will do that and report back.@Jan Miller

  16. Susan says

    Good Question!

    I have some time tomorrow and I'll call the FDA and find out.@Jan Miller

  17. Jan Miller says

    How do we put a group complaint together to get the FDA's attention?

  18. Marla says

    @Amy from Pennsylvania

    Amy

    Did you use the FDA medwatch online report? I filled this is back in March but heard nothing. But apparently they do track the number of reports against a drug.

  19. Amy from Pennsylvani says

    Let me also write here that I have contacted the FDA, in writing, about the poisonous drug Amiodarone; however the FDA has never responded.

Continuing the Discussion

  1. Fda amiodarone deaths | Logorequired linked to this post on July 5, 2011

    […] Stop AmiodaroneMay 30, 2011 … Sadly, my father died 4 years ago as a result of Amiodarone. … previous inquiry via Freedom/Info Act with the FDA about amiodarone deaths. … […]



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