Dofetilide

[Xian1]

I have afib and hypertrophic cardiomyopathy along with a history of 3 ablations and 7 cardioversions. I recently started taking Dofetilitde after the required 3 day hospital stay. IT is now 10 day later and I still have passing epidodes of afib. I am interested to hear about anyone else on defetilide and how effective it is and how long you have been taking it.

[BobD Volunteer]

Sorry this drug is not licenced here in U K and Europe so your response market is limited.

[Xian1 in reply to BobD]

just curious does that include Tykosyn also

[Hidden in reply to Xian1]

Just checked on Google and apparently not…….

[BobD Volunteer in reply to Xian1]

According to my googling they are the same drug. Tykosyn is the trade name, dofitilide the generic name.

[mav7]

healthunlocked.com/search/p...

Welcome to the Forum !

Check the above link for previous posts. As mentioned it is not often discussed. Always note the side effects.

May want to google and use the Search feature in upper right corner for further info. Also, make sure your doctor is aware of your condition. Best to You !

[etheral]

I have been taking dofetilide (Tikosyn brand name) for 5 years for afib and had not had one recurrence. I have not had any other arrythmias and have maintained NSR

without any side effects. I highly recommend a trial if your EP suggests it. So far it has saved my life, as I experience pulmonary edema (severe heart failure a d lungs fill with fluid) because of my low cardiac output if not in

NSR. Best of luck, etheral

[Xian1 in reply to etheral]

Thanks, your experience sounds encouraging.

[2023AFibber in reply to etheral]

TY for sharing your experience

[Snowgirl65]

I was on it (after the required 3-day hospital stay) for about four months a couple years back. I had no side effects from it and it seemed to stabilize my a-fib at the time -- until it didn't anymore. My EP at the time said in a vague way that he couldn't do any more for me. I've since gotten a new EP, had a couple ablations and am only on Metoprolol and Xarelto now.

[mav7 in reply to Snowgirl65]

Thanks for sharing your story.

May I ask if your AFib is now controlled ?

[Snowgirl65 in reply to mav7]

Hi mav7 -- yes, it seems to be well under control now (knock on wood!) My last ablation was Dec. 2022 and I've been a-fib free since then.

[mav7 in reply to Snowgirl65]

Super ! Best to you !

[Xian1 in reply to Snowgirl65]

Yes that sounds familiar. My EP reminded me there is no cure for afib and said Dofetilitde would work until it did not (he has some patients that have been on it for 3-4 years) and then my options would be Amiodorone (which has more significant side effects) and then AV node ablatioin with a pacemaker in total control of my heart, or just live with afib.

[BaileyC57 in reply to Xian1]

What is EP?

[Xian1 in reply to BaileyC57]

EP - An electrophysiologist — also referred to as a cardiac electrophysiologist, arrhythmia specialist, or EP — is a doctor with a specialization in atypical heart rhythms and the electricity of the heart.

[Xian1 in reply to Snowgirl65]

Yes that sounds familiar. My EP reminded me there is no cure for afib and said Dofetilitde would work until it did not (he has some patients that have been on it for 3-4 years) and then my options would be Amiodorone (which has more significant side effects) and then AV node ablatioin with a pacemaker in total control of my heart, or just live with afib.

[Snowgirl65 in reply to Xian1]

There have been quite a few on this forum who had an AV node ablation with pacemaker. I'm wondering if it's still too soon to decide if Dofetilide isn't working -- maybe more time is needed.

[Xian1 in reply to Snowgirl65]

Yes, I plan to continue with Dofetilide because it does seem to limit the occurance and duration of my afib episodes. My EP said AV node ablation with pacemaker would include a model with a cardioverter-defibrillator due to my hypertrophic cardiomyopathy. Hoping not to go there>

[JudyMarieC]

I was on Tikosyn a couple of years ago for about 5 weeks. Unfortunately, it didn't work for me - my afib was constant. I didn't notice any side effects from the drug. I'm now on digoxin, metoprolol and xarelto for my permanent afib and am doing fine. Good luck to you.

[kocoach]

Hello, I was on dofetelide (Tikosyn) for 25 years in fact I was on the study when they were trying to get it licensed for medical use and it did a wonderful job until it's efficacy wore down. I would get the occasional afib episodes but not for very long and I was able to still run 7 miles a day in the sand, spar and train other boxers, drink alcohol party all night living a normal life. Then I wound up in the hospital for something else and the Dr. put me on amiodarone which I am on now, doesn't work nearly as well as dofetelide. I am now 77 years old. The main caution was that it interacts with a lot of other drugs so you have to be very wary that, even if they prescribe it to you in the ER, always ask them to do an interaction check with pharmacist. Pfizer used to have a dofetelide hotline number you could call and talk to a technician, I don't know if they still have it. Just be sensible with your life and you should be just fine. Wishing you the best.