Amiodarone is not NICE

DrRich | January 10th, 2010 - 8:41 pm

As has been pointed out (pointedly) to DrRich, we do not have death panels in the United States. And indeed, considering that we’re not conducting military tribunals for Islamist terrorists who have tried (or succeeded in) killing and maiming as many of us as possible, it seems relatively unlikely that we’d assemble death panels (which sound even less due-process-friendly than military tribunals) for American patients.

What we will have, however, is a federally-mandated assembly, body, committee, commission, board, diet, parliament, or posse (but not a panel) of experts which will carefully evaluate all the objective clinical evidence regarding a particular medical treatment, and make “recommendations” to doctors about whether or when to use that treatment. The model which frequently has been offered up for our consideration, as we contemplate the workings of such a non-death-panel, is the British National Institute for Clinical Excellence, or NICE.

This being the case, it might be instructive to examine the preliminary decision made by NICE last week to disallow the use of the new antiarrhythmic drug, dronedarone (Multaq, Sanofi-Aventis) for British patients with atrial fibrillation (AF). Dronedarone is a long-awaited drug, painfully developed and tested over a very long period of time, as a potential replacement for the drug amiodarone (which, despite its many drawbacks, is the most commonly prescribed antiarrhythmic drug for AF).

AF is a common heart rhythm disturbance in the elderly and in patients with underlying heart disease. It can cause palpitations, dizziness, poor exercise tolerance and – because blood clots tend to form in fibrillating atria – often leads to stroke. Unfortunately, the antiarrhythmic drugs that are used to treat AF are either incompletely effective, or have potentially dangerous side effects, or both.

Indeed, as a group, antiarrhythmic drugs tend to be only moderately effective, and are toxic and poorly tolerated. Worse, one of the very nasty side effects sported by most antiarrhythmic drugs is the propensity to produce (paradoxically), sudden death from cardiac arrhythmias – a phenomenon we electrophysiologists like to call “proarrhythmia,” since this seems a less unnerving term than “sudden death.”

The reason amiodarone has become the most commonly used antiarrhythmic drug for AF is that it is measurably more effective than any of the other drugs, and better yet, tends not to cause proarrhythmia.

However, if Satan had wanted to invent an antiarrhythmic drug, he would have invented amiodarone. There are at least three features of amiodarone that render it diabolical.

First, as mentioned, the drug is obviously far more effective than other antiarrhythmic drugs, and does not cause proarrhythmia. So on its face, like most entrapping vices, it spins a certain appeal, one that lures doctors into using it far more blithely than they should.

Second, amiodarone has bizarre pharmacokinetics. Before it becomes fully effective, amiodarone needs to completely saturate the tissues of the body. During this “loading period,” which is generally several weeks in duration, large doses are typically used. Once the drug is deemed to be loaded, a relatively small daily maintenance dose can be used. This is because amiodarone is not excreted from the body like most drugs are, by the kidneys or the liver. Instead, amiodarone likes to stay in the cells “forever,” and for practical purposes you get rid of it only through the normal shedding of your body’s cells, such as skin cells and gut cells. This means that once you are loaded with the stuff, it’s a part of you for a long, long time – just about forever. (Amiodarone can still be detected in the blood for at least a year after the last dose.) Once you are on amiodarone, you’re on it.

And third, amiodarone has a unique and disturbing toxicity profile. Because it is stored in essentially every organ of the body, its side effects can affect almost any organ. And because amiodarone continues accumulating in your body as long as you continue taking it, the side effects can develop weeks, months, or even years after you begin the stuff. The side effects of amiodarone are almost too numerous to describe, but some of the more unique ones include:

  • Amiodarone commonly causes deposits to form on the cornea – often leading to “halo-vision,” where looking at bright lights at night is like looking at the moon on a foggy evening.
  • Amiodarone can cause a very striking and quite disfiguring blue-grey discoloration of the skin, generally in parts of the body exposed to the sun, producing an appearance which has been unkindly termed “Smurf syndrome.”
  • Amiodarone often greatly sensitizes the skin to sunlight, so that even trivial exposure can cause a nasty sunburn.
  • Amiodarone often causes thyroid disorders, both hypothyroidism (low thyroid) and hyperthyroidism (high thyroid). These thyroid problems are common with amiodarone, can be unusually difficult to recognize and treat, and are often disabling and even dangerous.
  • Amiodarone can cause neuropathy of the peripheral nerves, and more disturbingly, significant ataxia (a severe gait disturbance and loss of balance).
  • But the most serious side effect of amiodarone is pulmonary toxicity – lung disease. This can take several forms, from an acute respiratory distress syndrome that makes patients desperately ill, requires intensive care, and often results in death, to a more insidious, gradual, unnoticeable, “stiffening” of the lungs that both the doctor and patient can overlook until finally severe and irreversible lung damage is done.

And of course, given the drug’s extremely long excretion period, if any of these side effects should occur (and one or more of them occur in at least 25 – 30% of people who take the drug), you may be living with them (if indeed you remain alive) for quite a while.

As you can see, Beelzebub would be very proud.

When DrRich was a practicing electrophysiologist, his rule was to offer amiodarone only if the arrhythmia being treated was life-threatening or very disabling or disruptive to the patient’s life, and for which there were no other reasonable therapies, and only after a long, long talk about the potential risks. He has always been distressed that many of his cardiology colleagues appear to prescribe it so readily.

In any case it is no wonder that a substitute for amiodarone has been long sought – a drug that is as effective as amiodarone, that still has minimal proarrhythmia, and does not have the bizarre toxicity profile of amiodarone.

For years, hope has been high for dronedarone, whose chemical structure is very similar to amiodarone’s. As it turns out, however, dronedarone is an imperfect substitute. While the new drug appears to have amiodarone’s low proarrhythmia potential, and while it thankfully has none of amiodarone’s unique side effects (and indeed, appears to be quite well tolerated), dronedarone is not as effective as amiodarone.

Still, it has a decided advantage over amiodarone (much less toxicity) and over other antiarrhythmic drugs (low proarrhythmia), so in many patients who have AF it seems like it might be worth a try. It might not be effective in as many patients as amiodarone, but for those patients in whom it is effective, well, it’s effective. And if it doesn’t work well enough, you can always switch to something else.

Indeed, that’s how antiarrhythmic drugs ought to be used most of the time. Pick a drug that seems to provide the best available balance between effectiveness and side effects for a given patient and try it. If it is ineffective or causes problems, stop it and move to the next one. The more antiarrhythmic drugs that are available, the better the chance of eventually finding an adequate choice for your patient. (It is worth pointing our that once you try amiodarone, however, you are done with this trial-and-error strategy – once you are on amiodarone, you are, for practical purposes, always on amiodarone.) In any case, the appropriate choice of an antiarrhythmic drug, as in many areas of medicine, can only be made on an individual basis, and not on a population basis.

But alas, this is not how a Clinical Effectiveness Tribunal like NICE works. These Diets of Medical Quality will only look at the average response to a therapy within a population of patients and, seeing (for instance) that dronedarone may only treat 40% of AF patients effectively while amiodarone treats 60%, will deem dronedarone to be insufficiently effective to justify its additional expense. (Read NICE’s “appraisal document” on dronedarone for yourself.) NICE has determined that amiodarone is a suitable choice for the treatment of atrial fibrillation, and that there is no need for a drug like dronedarone (or, presumably, any new drug that trades a bit of efficacy for a toxicity profile that is much less extravagant than that of amiodarone).

Old-fashioned physicians like DrRich, who might reason, “An initial trial of dronedarone would likely spare 40% of my AF patients from having to be exposed to the horrific toxicities of amiodarone, so perhaps it’s worth a try,” are hopelessly and irredeemably of low quality, and aren’t worth bothering over.

And as for the Smurfs and Smurfettes on amiodarone, despite their breathing difficulties, unsteady gaits, inability to see at night, and severe skin photosensitivities which preclude their Florida or Arizona vacations, at least their anguish over not being allowed a viable and available alternative will be temporary. For the drug companies, seeing how a Posse of Clinical Excellence operates, will take the only logical business step remaining to them and severely curtail their development of drugs aimed at offering incremental improvements over the current choices.

There will be no alternatives to agonize over, and everyone will be happy. This, DrRich thinks, is the plan.

40 Responses to “Amiodarone is not NICE”

  1. Mary Wilhelm says:

    After reading all the reports of Amiodarone/Multaq,I am ready to stop taking these products.Multaq made me very depresed and nauseated.Amiodarone long lasting side effects are some of what I am experiencing ie dizziness,gait etc. Thyroid is hypo also.I have had 3 episodes of AF in the past 2 years.First I was on Coreg then Amiodarone then Multaq(awful)then Amiodarone.I converted very easy..within 3-5 hours.What recourse do I have?

    • DrRich says:

      Ms. Wilhelm,

      The treatment of atrial fibrillation is complex and controversial. Here is a series of articles that describe the various approaches to treatment. If your doctor has not discussed these with you, it might be time to consider getting a second opinion from a different doctor.

      Rich

  2. by deception i as given amiodarone for eleven months the doctor said i had an unusual heart prob emand needed it, he was doing research with my blood samples
    now i am completele disabled and cannot even stand

    am look for others who had problems and those never were notified of the bdangerss cancer lung kidney blindness
    liver damage neurological problems youcan find this on web

    i would like to find a lswyer who would start a class action
    against Wteth the mfger I live in S C near Ga

    • Constant says:

      Hi!
      I like to tell you , you are not alone!
      I had my thyroid permanantly damaged (now on hormone theapy for life) and now have problems walking and driving thanks to amiodarone.
      This toxic drug mostly unknown to ideot MDs that prescibe it
      is a money making drug for Wteth.
      It cost $1.6 mil to produce it in one year internationally and brought in $2,5 Billion for the Manufacturer that year.
      Do you think Congress will step in and stop it? NO!
      Not if they get paid by the lobies & get re-elected.
      So try suing the MD that order it and the hospital that had allowed it before YOU WERE TOLD ITS TOXIC SIDE EFFECTS, RISKS AND HIGH DANGERS and asked if YOU CONSENTED TO THE RISKS.
      There is a Lawyer in Texas that has tried Group action suing the Co., but got nowhere because of the law.
      You may want to look for his site on the net or e-mail me
      best of luck
      njc

    • claire says:

      My husband has an ICD which has been taking care of the afib. No shocks have been delivered according to the read out from the machine. On January 3, he checked into the hospital because of breathing problems. He had accumulated fluid, in three days he was dried out and sent on with the dangerous drug amiodarone. The doctor never discussed the side effects of the medicine, he just changed his ARB medication. After six days on amiodarone, my husband”s feet and ankles begin to swell. On the 11 of January, he went into the cardio doctor’s office where the swelling was observed. He was told to get some compression socks. By February 17, my husband’s feet and ankles were so big, he could hardly walk, his Pcp immediately called the cardio doctor saying he needed to be admitted to the hospital. They usedtwo medicines that should never be mixed with amiodarone, namely warfarin and siminstatin. Strong doses of diuretics were doubled to bring the swelling down. After 11 days, he was discharged on a Wednesday with questionable inquiries from the endocrinologist about his thyroid and by Sunday he was back in the hospital. Again they tried him out, but this time , I began doing some research on my own and that is when I found the dastardly culprit amiodarone. I was livid, there had never been any shocks delivered so amidarone was not needed, and the ICD was doing its job, After the third discharge, my husband continually gains at least a pound a day and he is filled with fluid. I am frighten to death as they have hastened his condition. They never came to the realization that the amiodarone was causing the worsen of his condition, until I, a lay person, pointed it out to them and I am not in the medical field. Right now I am desparate to help save him, but the legal option is on my radar. Please e-mail me, because I don’t know how to get back to this website

  3. Plas says:

    Why are we constantly being poisoned and made worse. I felt so good before my “treatments” for a slightly irregular heartbeat started. I’m about to ditch all of the meds. I was on 8 at one time – some to compensate for the side effects of others.

    Sorry to rant.

  4. edmund earle says:

    i am a uk resident, and, like many of my countrymen and women had to suffer the almost uselessness of flecainide acetate for many years, for the treatment of AF.
    After a stroke, and many, many serious episodes of AF,(up to eleven hours on one occasion, at my local hospital),i was at last put on to amiodarone by my heart consultant, and really thought this was the bees knees. Now however, i am doubting the very usefulness of NICE, , as they seem to block everything beneficial to life unless it is made here, and cheaply. my heart consultant himself has spoken to me about DRONEDERONE, AND THAT WE IN THIS COUNTRY CANNOT HAVE IT..
    SHAME ON YOU NICE.

    • Constant says:

      Hi!
      Here is the reason.
      No NICE’s fault
      It cost internationally $1.6 mil to produce amiodarone (mostly iodine) in one year and brought in $2,5 Billion for the Manufacturer that year.
      Do you think Congress will step in and stop it? NO!
      Wtech has a monopoly, do you think its loby will allow other competitors into their greed?
      Sue the MD and the hospital that has allowed it on you
      before informing you of its devastating side effects.
      Good luck

  5. Plas says:

    Has anyone you know had side effects from Multaq like poor sleep patterns, intense dreams, daytime fatigue and poor concentration from not getting much sleep, as well as vision problems?

    That has been happening to me since starting on it.

    I’m still in NSR, but at what price, and is it the Multaq keeping me there.

  6. Plas says:

    Well, I dropped back to half dose of dronedarone as per my cardiologists permission, and started feeling somewhat better, although some of the problems are still with me – and I’ve also recently started some of the gait and balance disturbances mentioned by others, and very disappointingly, much worse vision. I’m ready to ditch it altogether for several weeks to see what happens.

    I know dronedarone is now being scrutinized more closely, and I have no doubts that more devilishness will be discovered as we go forward. Heard any more about this, Dr. Rich?

    Having a next to nothing CHADS score and being in NSR for quite a while now, thank goodness he also finally took me off of Pradaxa, as that had it’s own brand of devilish disgusts. My GI track now feels real again. That’s a topic for a different thread.

    AF sucks bigtime – not necessarily directly, but the treatments and possible other consequences (thrombic events, etc) do.

  7. Dave says:

    None of you have learned your lesson. Big pharmaceuticals are interested in profits and not your health.

    Why do you trust your doctor to tell the truth when he’s getting his info from the drug company (they do the studies) and the doctor may have been taking gifts from the drug company (or at least some nice lunches).

    Wait 10 years and the true risks and complications of a medicine come out. The problem is dishonest research, bad science, and bad statistical analysis, and lots of money.

  8. Maryann says:

    I have had A-fib for about 15 years. I have changed cardiologists a few times, but none has stopped the progression. My extreme episodes began lasting 2 hours and now they last around 20 to 23 hours. It is very painful and debilatating. My new cardiologist has just started me on amiodarone 200 mg 3 times a day for 3 weeks, then once and day thereafter. I am to continue the Sotalol 160 mg I have been on for many years for 8 days then quit. He said I am at risk for a massive stroke with episodes that last so long. I have read these freightening posts and wonder what I should do.

    • DrRich says:

      Maryann,

      Obviously I cannot give medical advice on-line. Amiodarone is sometimes used appropriately for atrial fibrillation, but it should be nearly the last option in my opinion. You should consider seeing a cardiac electrophysiologist for another opinion, if you are worried about your current doctor’s advice.

      Rich

  9. Kim says:

    Why once amiodarone is started the patient is stuck with it? Is it the long or non-existant half-life that would prevent other medications being used?

    • DrRich says:

      Kim,

      Amiodarone can be discontinued, and its effect on the body gradually dissipates. While it is leaving the tissues, however, its effect on the heart rhythm is also changing. This makes it a great challenge (applying a lot of guesswork) to use other medications in the meantime.

      • Kevin Lee says:

        My father, a senior man, had a dialysis induced AF while at hospital early July a few weeks ago, and a cardiologist who was called in, administered to him IV of amiodarone and started him on loading dose. But after only two more days, low BP, low hr and low perfusion to both hands [paled] developed. Asked the nurse to hold it and also the BP meds, but it was continued on the next day at only 200 mg / day and was discharged after one more day while recovering from loss of physical strength. We continued to hold the med also at home monitoring carefully for changes. The BP continued to be lower than his comfortable level and was a concern going into dialysis again. But even with the low BP, his hr was steady even at the ending period of each dialysis session for the next two weeks. We did see a cardiologist following discharge but he insisted on continuing with the drug. We still continued to hold the drug. His hr, BP, physical strength improved after about nearly 3 weeks. But now over 3 weeks, his hr goes up 20 beats higher after a walk and during dialysis. Both his outer arms, esp. one side, have collected a lot more water than before. We have not been sure the drug was the only cause. IV lines were on this arm. We want to resume the drug to prevent AF induced by dialysis but these side effects have been immediate and severe for our father.

  10. Carl Leo says:

    I have been on amiod. for over 2 yrs. starting @ 400mg/d, down to 100mg/d over 1.5 yrs with no af in this period. I am 72, now having vision halo and slight dry cough. have been on HBP meds. for 36 years, but under pretty good control. I don’t know where to go on next step, but must ditch the amiod.

    Any similar cases??

  11. John Meyer says:

    I’ve been using dronedarone (Multaq) for 30 months after cardioversion and have had no recurrence of AF. I’ve had no noticeable side effects so have been happy with it. But my provider just dropped it from their formulary list, so my cost jumped from $80 to $140 for a 90 day supply. Amiodarone seems to be their suggested (cheaper) replacement. I am of the opinion that the greater cost is probably worth avoiding the amiodarone risks. (I love to visit the beach).

  12. Ralph Schneider says:

    John, I was diagnosed with AFIB 4 days ago and was prescribed Multaq, 2 pills per day. A 90 day supply without insurance would cost $972.00.
    So, for the extra $20.00 per month it probably be worth sticking with the medicine you are satisfied with, just my opinion.
    Having said that, I think it’s totally outrages for a drug company to charge $5.40 a pill. They have the patent on it so generics won’t be available for years down the road, so they gauge the hell out you.

  13. joe gerhardt says:

    I had been on multaq for a year and a half and started getting more afib episodes about every month and a half. I have been put on amniodorone and sleep better at night, have no palpitations and have more bowel movements than with multaq. I did not want to go with sotalof because of Toursades de pointe or death point for fatal arrythmias and be hospitalized for days to see if it is safe. I didnt realize how sluggish I was on multaq till I was taken off it. I take lowpressor 50mg bid also. Time will tell but I feel much better for now on Amni. I dont have the blurry vision either from multaq. I had to stop taking lipitor with multaq because it was causing liver pains also.

  14. gary hall says:

    I have been on amiodrone for a little over a month. First 400mg 2x a day. Now 200mg 1x a day. I had mytrial valve repair done and was put on this drug while in the ICU. There were never any discussions between me and ANY of the drs re: side effects. After getting discharged, I picked up my prescription and read of all the negative side effects. That has me worried. I saw my cariologist last week and he said I’ll be on this drug for 3 more months. I seem to have a blurriness in my left eye that has occurred within the last 2 weeks.
    1. Can an optometrist detect what is happening and if it is caused by this drug?
    2. if I am reading all of the above info orrectly, it sounds like once you start on this drug you can’t change to anything else?

    • DrRich says:

      1) yes
      2) It’s not so much that you can’t take another antiarrhythmic drug if you’re on amiodarone, but that if another drug is begun, the effect of the combination of drugs will be difficult to predict, and will change over time (as amiodarone slowly leaves the system).

      I cannot give personal medical advice on line. It may very well be that amiodarone was the very best option available for you. It not infrequently is, despite its drawbacks. But I cannot think of an excuse to start amiodarone on a patient without first describing the potential risks of doing so, unless the arrhythmia being treated is an immediate threat to life, and time is of the essence.

      Rich

  15. Amiodarone side effects or toxicity were never discussed with me when prescribed in hospital 3 years ago. Have shortness of breath and weight gain by 110 pounds. Cannot walk more than fifty yards without stopping. Just changed cardiologists and saw great concern in his face. He asked for the name of prescribing M.D.

  16. Peter Allwood says:

    I’ve been on amiodarone for just three weeks and had vertigo type nausea by second day. Almost constant headaches and tingling hands and feet ( feet quite painful ) other side effects including epic vivid dreams are also a bother. I had been in perminent afib and had failed ablation two months ago and two failed cardioversions. I’m still not in rhythm although amiodarone has definately settled the pace of heart. It even had me in rhythm for a day while I was loading up at 800mg per day. I personally don’t think it’s been worth the side effects as diltiazem on it’s own did a reasonable job of reducing high heart rate.

  17. Margaret Durham says:

    I have been on amioderone for 16 months, following cardioversion. My heart has been in rhythm since starting the med for which I am thankful. But . . . my hair is thinning noticeably. Pretty soon I’ll be in a wig or scarves. Anyone else have this problem?

  18. Mike Senneway says:

    I have been on Amio. for 3 months after “load up”. I take 200mg, three times per week. No rhythm issues, no noticeable side effects, recent blood test normal. My wife thinks my mental judgement is slightly impaired,(maybe just getting older-62.)Is this a problem with this drug? Is this lower dosage I take still subject to same accumulated side effect damage over time as the “daily dosers” commenting above?

    • Carl Leo says:

      Yes, I (73)took amiodarone, 100mg/day for almost 3 years and it held off any AFIB. I stopped in Dec. because it was affecting my eyesight.(I also had other side effects,sunlite,etc. Now, about 2 months after stopping, no AFIB,I came down with amiodarone-induced thyrotoxicosis (AIT-2) or hyperthyroidism. I am on methimazole now (prob.should have been predinsone) and may have to get my thyroid removed. BUT I AM STILL ON THE GREEN SIDE OF THE GRASS !!!!

      I can’t say I wouldn’t do the same again. Carl

  19. Sherri says:

    It does cause you to drop lot of hair. I was on amiodarone for a couple of year and stopped because it was causing me dizziness,nausea,stumbling, dim and distorted vision. I couldn’t see to drive at night; not depth perception to be at ease with driving in the dark. During the time I was off the amiodarone, I did much better but the symptoms listed above have not completely abated. I am going off this medication for the final time. I no longer want to be dizzy, bald stumble-bum who can’t see. I’ve had the eye surgeries already and am still paying for the ‘good’ lenses (allegedly where you can see better after the surgery). I am truly disheartened by the care I have received. If I hadn’t had the amiodarone, I’d probably have been able to see better anyway; now I’m far-sighted instead of near sighted and need trifocals instead of bifocals. I am back to fretful sleep patterns, my hair is falling at an alarming rate and I have no energy and constant pain in my knees. Something has to change and my physicians don’t seem to be that interested (to be quite frank) so I’m going to make the changes myself. Thanks for having the forum. The Lord helps those who help themselves and I’m starting that today.

  20. Sherri says:

    PS Ablation failed for me as well. I finally just got a pacemaker and am as resigned to that as I can be presently. I’m really not sure why they are keeping me on the amiodarone with the pacemaker….wouldn’t a defibrillator have been better?

  21. Dave Madison says:

    I took Amiodarone 200mg every day for three years after my by-pass. For all that time my AFib and arrhythmia did not correct.Nine months ago after reading much material (including the literature with the refill) I told my Dr. I would no longer take Amiodarone. I am now under thyroid treatment. Who knows what is next – lung problems? DO NOT TRUST YOUR DOCTOR regarding Amiodarone, especially if he wants a long term treatment. There are Doctors who are very cavalier in throwing drugs at you. Why did my DR. keep me on this drug for so long with no results except looking forward to serious side effects? Amiodarone can correct OR WORSEN arrhythmia says the literature.

    • Glenn says:

      Sorry for your difficulties taking Cordarone..I went into an Afib situation 6 years after bypass surgery. Luckily my heart went back to a normal rhythm, so after 6 months on the junk I quit it. Now it has been almost 2 months and I am still in rhythm. There are other drug that can be used for arrhythmias,ie Sotolol and others. This drug should be outlawed. I’m counting the days hoping not to have a major reaction to this Junk.

  22. Karen Courtney says:

    My husband is dying from amiodarone. He is taking 800mg a day. Twice the maximum dose. He cannot move his legs and his hands. He has a liver that is 3xs the normal size. His kidneys are not working good. He has nodule on his thyroid from the medicine. We are now on hospice. They say he only has a few more weeks to live.

  23. Kevin Lee says:

    Karen,
    I am sorry to hear of the situation. Since my last post, I have learned that some cardiologist doctors are not familiar enough with the toxicity of the amiodarone for a small number of patients nor with the use of Multaq. The amiodarone was very long lasting about two weeks for my father. The Multaq (400 mg) was only about twelve hours or less and has to be taken with fatty meal (some oil) for good absorption. I have learned these from drug information on the web and as a caregiver…

    I hope your husband can come out from this.

  24. Ernie Dueck says:

    Dr Rich
    Interesting commentaries. I had not heard of Amiodarone until reading this blog. I’ve been on Dronedarone for over 2 years. I’ve had AF since my late 30′s (now over 70) and in December of 2010 my AF became continuous and sufficiently severe that I was forced to abandon running etc, that I had been doing for over 40 years. My cardiologist recommended a series of tests etc culminating in an attempt to revert the AF to SR using electrical shock treatment. Three attempts were made to no avail. I then volunteered for a trial with Dronedarone, offered by my cardiologist, in blind trials in February/March of 2011, at the end of the trial I was asked if I wanted to go on the real drug, to which I agreed. By July, my arrhythmia was reducing in intensity and then at the end of July the arrhythmia reverted to sinus rhythm and I have been literally AF free for over 2 years. I restarted running and other vigorous exercises including some mountain climbing etc. I’ve experienced some occasional minor AF lasting for a few hours but quite tolerable given earlier continuous severe episodes.

    To this point in time I have been delighted with Dronedarone given the literal elimination of AF. However I have experienced accelerated hair loss almost from the start of taking Dronedarone, and now in the past few months I am experiencing what seems to be Ataxia and running has become very difficult, stumbling etc and I have a constant feeling of imbalance when standing or walking.

    Are these symptoms of hair loss and Ataxia potentially related to Dronedarone?

  25. peggy says:

    It’s possible I was on that drug many years ago. It could be a good thing that I am bad at taking meds that make me feel bad. My heart would suddenly beat at over 200 beats a minute. I finally had an obaltion after many years of different drugs that did nothing.

  26. ann king says:

    Hi, I have AF and recently was admitted to hospital with a beat of 180 which was treated without my my knowledge of the dangers of Amioderone. I was loaded in hospital and then given it for 2 months to date, I am only on about 100mg at present but intend to stop taking it completly. I am going to Thailand for 2 months in Jan and Feb next year and it looks like the heart consultant could have ruined my holiday by giving me this drug although I did tell him of my trip. I am wondering if I stop taking it now do you think I will still be that sun sensitive in a month? Also HE KNEW I had an underactive thyroid which so I have read could be badly affected by Amioderone.

  27. Renee Erwin says:

    My father is in ICU at this very moment fighting for his life from this drug. Thank God he only took it for a short time but the damage is done. He developed Pneumonia, came home and suddenly was rushed back to the hospital with both lungs black from Amiodarone toxcity. He is making very small improvements. I pray he makes it through this. The doctor is telling us this takes a very long time to leave the body after taking. I am pissed and do not see how this drug can remain on the market to kill people. Doctors are aware of this and shame on the doctor who prescribed this drug to my once healthy father.

    • Scotty Kelly says:

      I’m sorry to hear about your father Renee this is scary stuff. My father was recently In ICU with septic shock. He was placed on amioderone IV for AF. He managed to pull through and has remained on amioderone orally with a combination of warfarin and metoprolol. Since being home for the past 3 months he has been re-admitted 3 times, with nausea, anaemia and as recent as last week with pneumonia. At first we thought it was most likely a result of the sepsis and a low immune system as I read more about this medication/poison “amioderone” I believe this is the reason behind his ongoing sickness. It’s crazy our family is only learning about these horrible side effects now and not from the doctors :-/

  28. Suzie Haas says:

    Thank you for writing this article! I hope it enlightens many of you on Amiodarone or those of you with loved ones taking it.
    My father had a toxic reaction within 48 hours of taking it. Sent to ICU coughing up blood and died less than 4 weeks later. As soon as he started coughing blood I told the doctor and nurses that it was a reaction to Amiodarone. They did not feel that was the case because most of the side effects don’t show up for 6 months. Finally they stopped after 7 days but it was too late for my dad.
    Please visit “Stop Amiodarone” facebook page where you can read about other people’s success and failures with this drug. It can be of help so please do it!
    Any information on these deadly drugs is good information.

  29. Phil Kauzlarich says:

    My wife had a stroke 3 months ago due to atrial fibrillation. Her cardiologist subsequently recommended a cardioversion, which she had on July 2nd. Prior to the cardioversion, there was no mention of amiodarone, or any other change in her medications. Immediately following the caridoverison, however, he stopped digoxin, and prescribed 200 mg of amiodarone, which she started taking that night. On July 3rd she developed serious breathing problems, and was rushed to the emergency room at 3:00 am on July 4th. She was diagnosed with bacterial pneumonia and congestive heart failure after spending 3 days in the hospital. A consulting caridologist at the hospital took her off of the amiodarone the first day she was in the hospital. I am really sorry that I did not know more about this drug before she started taking it. Her cardiologist is now recommending sotolof, and I am even more concerned at this point.

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