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

Sadly, my father died 6 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.


30 Responses

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  1. 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.

  2. 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

  3. 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.

    • Susan says

      Marilyn, I am so very sorry to hear about the loss of your husband.
      My father died from amiodarone toxicity and was treated much the same way. He appeared to have a cold and when he went to the doctor he was given antibiotics. Finally, when it was so bad that I took him to the Emergency Room, they gave him medicine to combat pneumonia. When that didn’t work…they gave it to him again! When that didn’t work, they put him in isolation because they thought he had TB. Like you say, it should have been a red flag that he was taking amiodarone but the doctors just didn’t pick up on it.
      I hope that you have joined our conversation on Facebook. If not, I invite you to do so.
      Please search for the group Stop Amiodarone.
      Best Regards,
      Susan

      • Sue Knight says

        Susan, are you the Administrator of the Group Stop Amiodarone? I was part of the group but suddenly it appears that I have been blocked. I have no knowledge of why I would be blocked. I have tried everything. It wont even let me bring up the site. Please email me or contact me in some way and tell me why I would be blocked. I am “friends” with several of the members and they were also going to message you to see if you could help with this.

        • Susan says

          Hi Sue!
          Thank you for contacting about the Facebook page.
          It looks like you were mistakenly blocked…my apologies.
          I’ll contact FB and see if we can’t get you reinstated.
          Pending their fix the only work around I can think of is to create another FB account and request to join the group.
          Again, my apologies,
          Susan

    • Janet Woods says

      Marilyn,
      My name is Janet Woods. My husband was diagnosed with A-fib also in Dec of 2010. We went to the reg. Doctor he said he had a-fib but just in his top part of his heart. Anyway my husband past away in Dec 11,2012. He also wasn’t feeling well from the beginning we went back to his Dr. He was out of breath n retaining water. The dr put him on lasic n potassium pills for 2 weeks at a time. We too went back to the Dr (reg dr the other one retired after 2 months) 3 times. In October 16, 2012 he was away on business in Overland Park, Ks. He said he was not feeling well going to bed early. The next morning I called to check on him, he said he was calling a ambulance, it tookhim 45 min to get dressed. By the time we got up there he was in icu,(my daughter n grandson went up there with me.) They too said it was pneumonia n congested heart failure they put him on antibiotics. By day 6 he was not getting any better. He was taken off the amiodarone. We stayed up there until Nov 6,2012. Came back here to Tulsa Ok.back in the hospitals here ( all the time being on oxygen). He was talking n walking, until Thansgiving he ran a fever of 104 so they put him back in icu. By that following Sunday we had to be put on a ventilator. By Dec 11,2012 he got really bad called our girls and they couldn’t check his blood he was clotting already. Took him off the ventilator, it was 3:00 by then he pasted at 3:15 am all from this dangerous medicine calles amiodarone. Wish I can grt this medicine off the market

  4. 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!

    • Karen Courtney says

      I guess your husband is not dying from amiodarone. My husband is! He only has a few weeks to live and he has amiodarone toxicity. It is so sad to watch my husband not be able to move his limbs. His liver is three times the size it should be. It is shutting down his kidneys now. He has a nodule on his thyroid from this drug also! Dont speak about what you dont know about. My husband is very aware of everything about his body. His mind is great!

      • Susan says

        Karen, I’m so sorry to hear that your husband is so gravely ill. I wish there was something that I could say or do to make things better for you but Amiodarone Toxicity is a hard thing to beat. Please join the group on Facebook called Stop Amiodarone for comfort, support, and advice.
        You’ll be in my thoughts.
        Susan

    • Susan says

      The drug is often prescribed “off label” for A-fib (atrial fibrillation). It was approved by the FDA for ventricular fibrillation and at that as a drug of last resort.
      It’s been my experience that you do have to be your own medical advocate and don’t assume that the doctors know everything. Doctors are heavily marketed to and they often rely on pharmaceutical companies for information. Yes, drugs often have side effects but to have the possibility of such a large number of patients to be exposed to the possibility of amiodarone toxicity and not tell them seems unfair to say the least. It would be like if you were to buy a new car and the manufacturer didn’t tell you that in between 10%-17% of the cars they sell the brakes will fail at some point. There you are driving one day and suddenly it’s all over. In regards to lawsuits, in my situation the statue of limitations has long passed. There is nothing that I can gain. Yet, I work on this website and the Facebook almost daily and the reason being that I don’t want anyone else to have to suffer the horrendous death that Amiodarone Toxicity brings. It’s awful…and if I can save one person or family then I’ve made a contribution.

  5. 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?

    • Susan says

      Vera,
      I strongly recommend that you get a second opinion! I would also suggest that you do some research on your own. Does your hospital have a medical library? If so go there and ask for the PDR or Physicians’ Desk Reference. Look up Amiodarone and photo copy your results. Show this information to the attending doctors. Sadly not all doctors are aware of the devastating effects of Amiodarone but they are real and they can be fatal.
      Please join the conversation on Facebook. The name of our page is Stop Amiodarone.
      Let us know how you are doing.
      ~Susan

  6. 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

    • dody barrett says

      Hi, Susan.

      Tech savvy I am not. I tried to join FB Stop Amio group, but looks like I wasn’t successful. Would be happy to post message there abt our experience, but didn’t see how? Dody

      • Susan says

        Dody,
        It takes awhile to be accepted on the FB Stop Amiodarone page.
        I think you’re in now!
        I’m glad you joined.
        Susan

  7. 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

  8. 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?

    • kathy jones says

      my husband’s cardiologist told him to stop taking
      amiodarone last week, after blood test showed his
      liver was highly elevated. My husband is very, very ill
      right now, with all kind of symptoms…. coughing, shaking
      arm, skin discoloration, aching legs, etc.
      (ANY ADVICE)

      • Susan says

        Kathy,
        I am so sorry to hear that your husband has taken amiodarone and is suffering from the side-effects it often produces. Amiodarone has a long half-life in the body and what that means is that even though he has stopped taking Amiodarone, it continues in his system for some time. I’m sure you are staying in close contact with your doctor and he/she is monitoring the symptoms that are being exhibited. Myself, I would be especially concerned with the cough. Amiodarone can cause interstitial lung disease which is the most serious side effect of amiodarone.
        I hope you have joined the group on Facebook called Stop Amiodarone. Members of the group may have different recommendations for you.
        I hope things go well for you and your husband. You’ll be in my thoughts.
        Susan

  9. 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.

  10. 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.

  11. 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.

  12. 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

  13. Susan says

    Good Question!

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

  14. Jan Miller says

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

  15. 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.

  16. 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.

    • Susan says

      This is the kind of thing we need to figure out.
      How do we effect change and get the way this drug is prescribed changed.

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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