challenge
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challenge, October 8,  2017  11:12pm EST

TIKOSYN versus AMIODARONE

As mentioned before on this forum my paroxysmal ( sometimes with intervals as long as 3 years ) AFIB turned into permanent AFIB when I changed ( on strong medical advice on account of bad side effects of Amiodarone ) to Tambocor ( Flecainide ). I then found out that Tambocor is only half as effective against AFIB as Amiodarone. Now I note in this forum that there is another seemingly successful medication called Tikosyn. Does anyone have statistical relative information on this medication?
9 Replies
  • Jeanamo
    Jeanamo, October 9,  2017  10:12am EST
    Hello, Challenge!  There are a number of members of this community who are taking Tikosyn and perhaps some of them will share the information you are seeking.  Like most medicines, Tikosyn does not work for everyone..but works well for others.  It does require a hospital stay for a few days to be sure one can tolerate it well.  It is less toxic than amiodarone, but can affect other heart functions in some people and thus often must be monitored.  I tried Tikosyn at one time and I could not take it.  However, others in this forum are taking it successfully and should be able to answer your questions.  I hope they will respond.  Thanks for posting!Best wishes to you...Jean (MyA-Fib Experience Community Leader)
  • rbennett00
    rbennett00, October 10,  2017  5:53am EST
    Hi Jean - were they able to tell that you weren’t tolerating the Tykosin while you were still in the hospital? What were the symptoms? I’m going in for my switch over to Tykosin this weekend and want to know as much as I can from people who’ve tried it as possible. Thanks!
  • Jeanamo
    Jeanamo, October 10,  2017  4:08pm EST
    Hello, rbenett!  When I tried Tikosyn in the hospital, I went into atrial flutter...which I don't think is a common reaction, but not sure. I had an extremely rapid heart beat. My physician immeditely stopped it for me. I believe one of the things they are monitoring most closely with Tikosyn is the QT Syndrome. (You can research to find out more about this) as it can be a serious arrhythmia and Tikosyn may cause this is some individuals.  However, chances are that you will not exprience adverse effects such as these....so perhaps it will work well for you.  You will be monitored constantly while beginning Tikosyn so  any complications woud be recognized immediately while you are in the hospital.  There may be some additional monitoring after you leave the hospital if your electrophysiologist recommends it.  I hope you find that taking Tikosyn will be a great benefit for you!  Many members of this group have been taking Tikosyn successfully for a long time.  Let us know how you are doing!Wishing you the best..Jean(My A-Fib Experience Community Leader)
  • lmaj
    lmaj, October 11,  2017  1:59am EST
    Hello rbennett.  After my Multaq failed (after a month), my dr. put me on Tikosyn.  I was in the hospital for 4 days (not 3) as after one day of being in NSR after firsr and second dose, I went into afib and stayed there for over 24 hours . . . . they re-introduced 25 mg of Atenolol (half twice a day) which affects the rate, not the rhythem and things finally calmed down.  However, it did not keep me in constant NSR and I would have bouts of afib several times a week lasting anywhere from 2 hours to 28 . . .I had an ablation in April for both afib and aflutter.  I have been kept on the all my meds, i.e. tikosyn, atenolol and elilquis.  Don't know if I will ever come off, but that's okay.  I had a teeny bit of afib in the blanking period but have been okay except for periods of palpatations, PACs and PVCs (which can be pretty constant sometimes).  I drink plenty of water, drink decaf only and no alcohol  . .I do have sleep apnea and use a cpap machine at night (i love it . . .).  While I try to walk 30 minutes every day--the last few weeks have been a little crazy and haven't been able to do that.  Hoping I get back on track very soon.Good luck.  Many people have been on tikosyn and it has worked really well for them.  I have a friend who had three abblations (the first two were for aflutter which was masking the afib---while he was getting his third ablation the afib showed up and they treated for that and he has been good ever since)---he was on Tikosyn and he opted to say on and has been on it for 5+ years--don't think he will ever go off.Hope it all goes well for you and always keeps you in NSR.Best, linda
  • sls642
    sls642, October 11,  2017  4:33am EST
    Have been on Tikosyn since 2011. Was taking Amiodorone for quite a while when I first developed AFIB after numerous heart problems. Had to stop because it wasn't working  and had many side effects. Then tried very high doses of Coreg and it didn't keep me in SR either. Nothing seemed to work when I was out of SR except being shocked. My AFIB began in 1998 so I knew my trigerrs pretty well. Decided to do everything I could to stop them. Quit my job, stopped working out, avoided heat, eliminated stress and anger (not easy), avoided emotional situations, limited picking up anyhing more than a few puonds, got as much sleep as possible, took sedatives at night for sleep. lost weight, and more. It was especially difficult to control the stress and anger but I was determined. My last (and worst) episode in 2011 landed me in an excellent teaching hospital. where my rhythm specialist suggested Tikosyn. I researched it on my laptop (always with me) and it looked promising. Not a lot of data but looked like it might work. Had a list of back ups (in descending order) if it didn't. I had to do something because I was basically useless when in AFIB. It made me so sick I knew  it had to be doing damage to my already weak heart. A lot of docs don't think this but I believe they are wrong, The Tikosyn didn't give me any side efffects and has kept me in SR for almost seven years. I take a lot of other heart meds as well but I believe it is the Tikosyn that finally stopped my AFIB. Other people on this forum have had different experiences with it. Maybe I was just lucky. I should also add I have two rhythm specialists and a number of cardiologists that follow me. All are at major teaching hospitals and are first rate. Don't be reluctant to travel to find them. It could save your life.
  • robin48
    robin48, October 15,  2017  6:04am EST
    The more I read about Tikosyn the more I wish my insurance would cover it.
  • lmaj
    lmaj, October 16,  2017  4:12am EST
    Hi robin48.  Sometimes with the drugs that we all seem to find ourselves on the company itself has a program where you get the drug (savings card) for a lot less--it depends on the insurance you are currently on if you qualify.  Please check out the tikosyn official site at:  https://www.tikosyn.com/ for the details about these programs.  I used one for Eliquis--$10 co-payment until I reached my deductable on my insurance and no longer pay any deductables (that's how much I've had to tap into my insurance this year . . .).I've been on tikosyn for almost a year now---it did not keep me in NSR so I ended up having an ablation last April.  I am still on Tikosyn and may remain on it forever---I don't care . . .I just want to remain in NSR and with the ablation coupled with the medication seems to be doing a better job (I have everything crossed).All the best, linda
  • downtownmt
    downtownmt, February 14,  2020  8:45pm EST

    Hi, not sure if this is the correct place to post.

    I am a 39 year old male, slightly overweight. I was diagnosed with Atrial Fibrillation. It comes and goes every 4-5 days. The doctor has recommended a Trans-esophageal Echocardiogram/Cardioversion/admission for Tikosyn in 3 weeks.

    I've read the responses in this thread and they seem positive. Was hoping to see if anyone has had any updates with taking Tikosyn .

    Thanks.

     

    -Mike

  • sls642
    sls642, February 15,  2020  11:40am EST

    I have posted lengthy comments regarding my experience with Tikosyn (along with a combination of other heart meds) and controlling my Afib. It's now a few years later and I am still in SR, no break throughs, no extra beats, no thuds, nothing. I simply can no longer even feel my heart it is so calm.

    Totally different story when I was in Afib. I was basically unable to do much of anything. I would only come out of it through electric cardioversion. I decided against ablation because my heart had been through 2 by pass surgeries and three heart attacks in three years and I thought that my heart was telling me to  leave it alone. Just give it a chance to recover.  But I knew that would not happen with the Afib. Nothing that debilitationg can possibly not cause further heart damage although I encountered docs who said this. I didn't beleive them and went elsewhere. 

    I am now going on 10 years Afib free. My heart has never been this silent. My docs keep my BP extremely low, (which took some time to get used to) and my HR has been coming down over the years as well. I don't exercise other than walking at the mall, watch what I eat, avoid heat, stress and lifting. I am also diabetic and had to get total control over that as well. New drugs for this which work amazingly well. And protect your heart. 

    I will aways have a damaged, scared heart but the good news is that my EF has gradually improved along with my heart. It's been a long, slow process in which I received both good and bad advice from many experts. Ultimately, you are responsible for yourself. The best thing I ever did when my journey began was to carry a laptop with me everywhere, check everything I was told and read everthing I could find. All the information in the world is on the net, use it.  

    Many docs don't like being questioned, it's just their mentality. Others welcomed whatever I asked them. The ones that could answer everything I threw at them turned out to be the ones I stuck with. No surprise. Find the best docs you can and don't be reluctant to travel to find them. Shouldn't be this way but its baked into our existing health care system and for now at least, it's all we have. 

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