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RJG Find out more about RJG
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  • Amiodarone

    My 17 year old son has been on Sotalol for about 1 1/2 years now. After his most recent episode(arrest) ( He has a ICD) the cardiologist upped his dosage but now is wanting him to go on Amiodarone. I have read the side effects and they seem very scarey. Are there people out there that have been on the drug for a long time what have their experiences been?
    Thanks .

  • #2
    Re: Amiodarone

    Amiodarone works really well but most try to use it sparingly. Is your son seeing a specialist?

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      Re: Amiodarone

      I was on Amioderone, last year for over 6 months. After the first week of adjustment, I fortunately had 0 side effects
      RONNIE

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      • #4
        Re: Amiodarone

        I notice from reading various forums on here that people seem to go on and then off of Amiodarone....I don't quite understand that?
        If it is....... one of the last resort drugs........what do they go on next??
        Just curious.

        Thanks

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        • #5
          Re: Amiodarone

          I have have been on Amio for the past year and a half.
          I just had my tests for it, (Kidney function and others) and everything is just fine.
          The only side affect I have is that I am more sensitive to sun light so have to be very careful. I use lots of sun block, actually found one that is rated a 70 and use it when I golf.
          During the first year I had to go every 3 months for tests for side effects.
          I still have to go, but less frequently.
          So far it has done the job for me, but I know others have had problems with it.
          I would say if the doctor feels he needs it, go for it, he'll be carefully monitored to start with.
          I know others who have a bad experience with it will say don't take the chance, but then that's decision you have to make after you weigh the pros and cons.
          Ask you doctor what follow up he has once he starts using it.
          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
          So if you are capable of thought then you are capable of great things
          Good luck and stay well.
          Glen

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          • #6
            Re: Amiodarone

            amiodarone (cordarone is the brand name) was approved by the FDA to be drug of last resort; the manufacturer, however, marketed it as a first line drug for atrial fibrillation and while they were fined and forced to stop, the damage has been done. Many doctors still think of amio first and/or early on before everything has been tried.

            there are both disopyramide and dofetilide that your son could try before he gets to amio.

            most doctors won't give it to someone so young because it is very toxic. it has a 2% chance of making you blind. it is absorbed by almost every tissue in the body. it can build up in the retina and in your skin. it is making my mom turn blue after ten years on it. you need to have blood tests every six months to watch for liver damage. you will have to wear serious sunscreen and protection as it will make you get sun poisoning otherwise and it can create halos around lights so night driving is tricky or dangerous. it can cause your thyroid to stop working.

            true, some people can take it without any trouble. however, the list of side effects is so long (i gave you about half or so) that you are liable to get something. my brother was on it for six months and has to be on thyroid replacement for the rest of his life now.

            amio is a big, big deal in someone so young. i would seriously explore every other medication on god's green earth before going that way.

            take care,
            s

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            • #7
              Re: Amiodarone

              When I left the Cleveland Clinic in May the Dr. put me on amiodarone. I was on it it for about a week then I broke out in a rash that covered my whole body (head to toe). They found out that I was allergic to it. Thank God that was the only reaction I had...


              Tigger1
              " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

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              • #8
                Re: Amiodarone

                Thanks for the responces. I am just wondering about the sun sensitivity.
                Do you need sunscreen even if you are just out for a short time? In the winter? How bad is it.
                What brand makes 70 protection?
                Is there a perscription for 70 that you know of?
                Is it just like getting a bas sunburn? Is that how it acts?

                Thanks

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                • #9
                  Re: Amiodarone

                  I have been on the amiorone before, and was taken off after doctors had thought it caused me thyriod problems that turned out to be another issue all together and when I started having atrial fib again the doctor restarted it. I only had the sun sensitivity. But now I feel concerned cause it was the only med. I was tried on for the atrial fib., does that mean I should of been tried on ohters drugs before to?
                  Jen

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                  • #10
                    Re: Amiodarone

                    Dear Julie,

                    If you are still having afib, then you should be trying other medications to make it stop.



                    Dear RJG:

                    Sun poisoning causes a red skin rash, sometimes with small blisters, in areas exposed to sunlight. Fever. Fatigue or dizziness. It is MUCH more severe than a bad burn.

                    In my reading on sunblock, anything over 30 is just marketing hype, not really more protection. Also, you need zinc oxide to really make it block and fabric is best. Large hats, long gauzy clothes.

                    It depends on the person how long you have outside but my brother went to a baseball game and he was in agony for weeks after from the damage b/c he forgot to wear block.

                    take care,

                    s

                    Comment


                    • #11
                      Re: Amiodarone

                      In my experience, I found I don't need to use the 70 block, I have a 45 that I use most of the time, the 70 is just in my golf bag.
                      You would use it as instructed, put lots on a couple 3 times a day if your out there that long. I tend not to hang aroung in the sun too long, I never did even before taking Amio.
                      Re-apply after swimming etc.
                      Since using sun block I have never gotten to the point where I was sun burned, even when I go out in my boat, so I cannot say if the burn is worse than normal.
                      25 years ago, I was re-roofing my house and got burned bad and had all the sun stroke symptoms Sarah mentioned, thought I was going to die I felt so bad, so now I am very careful when I spend time in the sun.
                      Like I said, since using the sun block I have no problem, but there are those that are just normally more sensitive, so I think that using Amio would make it even worse.
                      In the winter, being in Canada, the sun is not as strong as your southern states, I did not use sun block in the winter as you are usually covered anyway.
                      I do snowmobile a lot and it hasn't been a problem.
                      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                      So if you are capable of thought then you are capable of great things
                      Good luck and stay well.
                      Glen

                      Comment


                      • #12
                        Re: Amiodarone

                        And another reason to use sunblock.........

                        I was never a very serious sunbather, but did get burned occasionally. I was diagnosed with a superficial but still a real melanoma a few months ago. I had it removed, and am now "cured," but you can bet that I watch myself very closely and wear 30 sunblock every day!
                        Daughter of Father with HCM
                        Diagnosed with HCM 1999.
                        Full term pregnancy - Son born 11/01
                        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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                        • #13
                          Re: Amiodarone

                          Amiodarone works great for the heart, but it damages alot of other things in the process..
                          My grandpa was on it for 4 or so years when he began having bi-weekly CHF episodes. This went on the whole summer until after a real long story they figured out that the amioderone killed his thyroid, which was screwing up his heart, which was causing the CHF problems. He had to stop taking it then. They've controlled the thyroid problem now, but his nose is permanently blue because of the amioderone.
                          It was, however, the only thing keeping him in a sinus rhythm. It does work good, but I'd watch the side effects in someone so young.

                          Dana
                          Dana

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                          • #14
                            Re: Amiodarone

                            You'd think that when a drug in the PDR has GIANT BLACK BOX around the toxicity warning that the doctors would remember that amio has a ton of side effects. This is not the first time I've heard that it took a long time to figure out what was wrong when amio was the culprit, which seems like basic Doctor 101 if you ask me.

                            Such a shame.

                            S

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