Tikosyn

Has anyone here ever been on Tikosyn and got off of it? I am a PAF’er but NOT SVT’er. I had cryoablation about 5 months ago. Still have AF 2-3 times a month but big reduction in symptoms, duration and frequency. I’m questioning whether my Tikosyn is making any difference. My EP says I can quit if I want but would end back up in hospital to get back on them to start them again if it turns out Tikosyn actually is working. So my question is has anyone quit and seen no change in their PAF afterwards?? I’ve been on them for 2-1/2 years.

[BobD Volunteer]

You will have to wait for our US friends to wake up as this drug is not available here in UK or Europe.

[Hidden in reply to BobD]

Yes I understand that. I’m assuming that there is an ample following in the US on this site. Depending on location it is between 1 & 4 PM in the states.

[etheral]

I've been on Tikosyn for 18 most after new onset AFib put me in heart failure. I have remained in NSR ever since. I have had no side effects. If you are not getting side effects and the drug seems to be helping,even if not 100 percent, then it would seem reasonable to continue it to a avoid a possible hospital stay. However if that possiblity doesn't seem too onerous, you could give discontinuing it a try. What does your EP say?

[37Polly in reply to etheral]

Say etheral, how long have you been on Tikosyn? Is that 18 months or years? I have been on it for 14 months after failing on rate meds and flecainide and an episode of alternating afib and aflutter for 16 days. I have had only a few small episodes since, and gradually feel so much better without rate meds. However ablation is still in discussion.

I am healthy otherwise, and exercise and am not overweight, but I am a small 78 yr. old female. My EP says it is my decision but says he has a patient who has been on Tikosyn and done well for almost 15 yrs. Are you another. Id love to hear more of your experience

[su14]

I was started on Tikosyn immediately after my second ablation. It did extend my hospital stay while I was ramped up on the correct dose. In the initial healing period (six weeks) I had occasional break through of AFib, usually lasting no more than 30 minutes. Three months after the ablation, the Tikosyn was stopped in order to evaluate the effectiveness of the ablation. (wore a 30 day event monitor). During those 30 days, I had AFib almost everyday. I was restarted on the Tikosyn at the end of the monitoring period without having to be re-hospitalized. My EP said that new protocols state that Tikosyn may be restarted in the home setting if it is within 6 months of of stopping a previous dose.The Tikosyn was restarted but I continued to have break through AFib. I eventually had to be defibrillated and was switched to Flecainide and have had no AFib episodes since 11/18. My goal is to come off all medications-so I hope that more healing time will make a difference.