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tikosyn

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  • tikosyn

    does anyone have long term experience with tikosyn? and can you share your exerience on the drug?

  • #2
    There is not a great deal of long term information here... the drug is rather new. It seems to work for some, although I am not aware of any long term improvements in quality of life for those on the drug - it has provided some short term improvements thus far.
    Best wishes!
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      tikosyn

      HI,

      I was on Tikosyn for about two years, at which point it stopped working for me. However, I have very stubborn afib and they didn't think it would work at all, really, so two years was a gift.

      I didn't experience any appreciable side effects from it.

      However, I backed down to about half my beta-blocker dose after I stopped taking it, so I think there was some medication suppression going on there.

      Things to know about TIkosyn: don't ever drink grapefruit juice with it and there is a very, very long list of medications you CAN'T take while you are on it since they will elevate the Tikosyn level.

      Your compliance with Tikosyn MUST BE 100% --no missing, no skipping, no increasing or decreasing doses --ever. If you have trouble with your med schedule, Tikosyn may not be right for you.

      After spending a night in the ER b/c I accidentally took 2 within 30 minutes, I set up a routine where I had a whole month of weekly pill trays set up so I could SEE that I'd taken it and also logged it for a while, too. If I couldn't have my pill boxes set up (like traveling) then I would log each dose.

      TIkosyn's success statistics based on the FDA approval studies is pretty close to amiodarone's but without the long term numbers --I mean it has only been around for 3 years and in a few people it does just stop working after a few years.

      Feel free to ask me anything else you want to know.

      S

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      • #4
        tikosyn

        I was put on it as an experiment to see how it would work with v tach - I understand its primarily effectiveness is for a fib. It did no work for me but while I was on it I had very little side effects - 2 months... :P
        Chuck B

        An inch is a cinch, a yard is hard

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        • #5
          tikosyn

          thank you for the reply,what medication did you go to after tikosyn?

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          • #6
            Much to my dismay, I was put on amiodarone. Amio has actually worked well for me but I worry about the long term side effects. I was on flecanide before tikosyn and was having a lot of arrythmias.
            Chuck B

            An inch is a cinch, a yard is hard

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            • #7
              Medication

              What kind of drug helps when you feel like you have a weight on your chest and can't sleep? I'm taking 5mg Monocar right now.
              Tammy

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              • #8
                Re: tikosyn

                Dear Tammy,

                Please talk to your doctor and find out what is causing your symptoms. Shortness of breath? Tachycardia? Hard to say. We can't tell you what medication to take (nor should we!), so please call your doctor.

                Take care,

                S

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                • #9
                  Re: tikosyn

                  Talk to your doctor - those symptoms can be from several different things from obstruction - to - heart failure and a dozen things in between.
                  Please talk to your doctor - then you will have a good nights rest.
                  Lisa
                  Knowledge is power ... Stay informed!
                  YOU can make a difference - all you have to do is try!

                  Dx age 12 current age 46 and counting!
                  lost: 5 family members to HCM (SCD, Stroke, CHF)
                  Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                  Therapy - ICD (implanted 97, 01, 04 and 11, medication
                  Currently not obstructed
                  Complications - unnecessary pacemaker and stroke (unrelated to each other)

                  Comment


                  • #10
                    Re: tikosyn

                    Really,
                    I was scheduled for a Transthoracic Echo (???? what is this?) and a Regular ECG on April 11th but it was cancelled due to SARS. I'll call today and see when I will be able to get in... Thanks for your concern. It still amazes me how people who don't even know me can take the time to be concerned. God Bless
                    Tammy

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                    • #11
                      Re: tikosyn

                      Tammy, you are just as important to us as everyone else on this board. Always remember that.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: tikosyn

                        Reenie
                        You sound like such a wonder person. It's a pleasure meeting so many caring people. Thank you!
                        Tammy

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                        • #13
                          Re: tikosyn

                          http://www.heartsite.com/html/tee.html
                          How does TEE differ from a standard ECHO? A standard echocardiogram or Echo is obtained by applying a transducer to the front of the chest. The ultrasound beam travels through the chest wall (skin, muscle, bone, tissue) and lungs to reach the heart. Because it travels through the front of the chest or thorax (pronounced thow-racks) a standard echocardiogram is also known as a TRANSTHORACIC (pronounced trans-thow-rassic) echo.

                          lisa
                          Knowledge is power ... Stay informed!
                          YOU can make a difference - all you have to do is try!

                          Dx age 12 current age 46 and counting!
                          lost: 5 family members to HCM (SCD, Stroke, CHF)
                          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                          Therapy - ICD (implanted 97, 01, 04 and 11, medication
                          Currently not obstructed
                          Complications - unnecessary pacemaker and stroke (unrelated to each other)

                          Comment


                          • #14
                            tee vs. echo

                            Just to clarify:

                            Regular echo = transthorasic echo

                            TEE = transesophogeal echo where they sedate you, numb your throat, and run the probe down your throat to the heart from the backside. Usually used to look for clots and things you can't see from the front. Yes, it is yucky but you don't remember it happened if it is done properly.

                            S

                            Comment

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