Coming off Tykosyn

[jsanta]

I am a 68-year-old male six years ago I had a flutter had an ablation and didn’t work. Then I had two other ablations Because my a flutter turned into a fib.Those two oblations to not work so being I went to a fib. 4 years ago my new doctor put me on Tykosyn. Worked very good no issues was in sinus rhythm majority of the time. Had a couple of a fib attacks had a couple of cardioversions. All worker. Last year I got Covid despite having two vaccination shots. Supposedly the Covid burnt out my electrical system I have no electrical going to my heart I have a complete left bundle Block. 100% heart block. My pulse dropped down to 30 being I have no electrical they rushed me to the hospital popped in a 3 lead pacemaker and brought my resting pulse now no louder than 70. I actually felt really really pretty good last week. They had put me on lisinopril for a year and that actually helped my injection fraction which is now between 50 and 55%. I have no plumbing issues at all. Last week I had a hernia operation and they noticed in my EKG that my QTC count was over 500. Whatever reason that gave my EP doctor a lot of concern. Since I have a pacemaker monitored 100% of the time and he saw a few instances where there was a long pause between electrical signals. He immediately said for me to come off Tykosyn. I was very disappointed because Tykosyn controlled my a fib. I’m now off Tykosyn for three days I’ve had no episodes and my pulse is about 90/75 resting. Has anybody out there come off Tykosyn with a pacemaker and how are you feeling?. I know when I signed up for Tykosyn they said this was not a cure-all and it was not forever but I guess Tykosyn has some very dangerous side effects. Including death. So he reset my pacemaker and he said you may not even know when you’re in a fib. Is being and constantly a fib knowing it deadly?

Anybody have any thoughts? I don’t wanna be in a fib and I’m kind of feeling that it’s gonna come back. But maybe I’m lucky and it won’t.

[BobD Volunteer]

Sorry, we UK and European members can't answer as the drug is not licensed here. Hopefully some US based ones will be along soon.

[jsanta in reply to BobD]

Too bad worked for me but just maybe they didn’t deem it safe yet. Thanks for your reply!

[CDreamer]

My only comment - since my 3 lead PM implant I’ve had virtually no AF - only when I had COVID & accompanied by pneumonia. AF resolved pretty quickly and nothing since ie last 6 months.

I couldn’t tolerate any heart meds so haven’t taken any heart meds since 2014.

[jsanta in reply to CDreamer]

Wow great news for you!!! I hope I’m as fortunate!!

[CDreamer in reply to jsanta]

So do I. It really has been best thing I ever did as I was having 3-4 episodes of very symptomatic AF a week.

[Lilypocket in reply to CDreamer]

That is amazing! So pleased for you. Ablations are not always for everyone

[etheral]

Hi, you are an interesting case, something no patient wishes to be.If you didn't go into CHF when you were in AFib, you are in no immediate danger from the AFib returning. If your QT interval is over 460 to 500 msec, you have an increased risk of serious arrhythmias, including Vtach or Vfib which can cause sudden death. Tikosyn is very effective against AFib. I have been taking it for 4 years without any arrhythmias or side effects at a dose of 500mcg twice daily. It also comes in 125 and 250mcg doses as well. If the AFib becomes a problem again, It would seem reasonable to me to restart the Tikosyn while monitored in the hospital and perhaps a lower dose would control it without excessively prolonging the QT interval. Discuss this with your EP. Best of luck, etheral

[jsanta in reply to etheral]

Thank you so much! CHF mean congestive heart failure? I’m off the Tikyson 2 days now watching heart rate about 75. I was taking 250 twice a day . Have I watch on to monitor rate. I also have a monitor for the pacemaker and they were call me if I am in a fib more than six hours. So fingers crossed! Again I thank you so much for your input I will keep you posted!

[Snowgirl65]

I don't have the health issues you do, but I was on Tikosyn (dofetilide) for a couple years before my EP finally took me off in January following my April 2021 ablation. I've since had two a-fib episodes, mild, and completely expected considering an anxiety-producing event(s), but have had no problems since.