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Treating A-fib with Tikosyn (Dofetilide)

Posted by Pfestus1 
Treating A-fib with Tikosyn (Dofetilide)
October 03, 2024 08:32PM
I'm new to this forum, and fairly new to A-Fib. The forum already has been very helpful in understanding my heart problem and options.

I'm 73 yo, in generally good health and have been very active up until recently when I started to experience A-Fib. Past history of a heart attack in 2007, with a stint placed in LAD artery of the heart. A second heart attack in 2015, but no stints placed.

Currently I am in A-Fib all the time. I feel very weak all the time, and very little exertion quickly wears me out. I'm not used to being so sedentary.

With the onset of A-Fib my Cardiologist referred me to an Electrophysiologist. This EP does not do invasive treatment like Ablations. He is recommending that I be admitted in the local hospital for 3 days, and get me started on Tikosyn. I am scheduled for admission on Oct. 23. I really hope this converts me and I stay out of A-Fib long term.

My question for the forum is are my expectations for a cure reasonable? What issues might I be looing at experiencing on Tikosyn? If it fails what would be my next option of treatment?

Thanks to you all that participate in this helpful forum.

Hank Pfister
Re: Treating A-fib with Tikosyn (Dofetilide)
October 04, 2024 03:42AM
You need a 'better' electrophysiologist. You should be controlled better than to be permanently, or just persistently, in AF. You want to have your rate less than 100 when you absolutely have to be in AF for some reason, and you want to be relatively unsymptomatic. So far, I'm guessing you're batting 00.

Secondly, there IS NO cure for AF. You can control or manage it, or you can block or forestall it. Except for about one person in 20, those who have a firm diagnosis of AF must be controlled by anti-arrhythmic drugs or by mechanical means such as ablation or a pacemaker...which still requires an ablation.

An ablation will create scar tissue around any foci in your atrial endothelium, or in the left atrial appendage, or in the coronary sinus, or in the pulmonary vein antrum, or in the septum. Even the Vein of Marshall can be a source of re-entrant for the extra and unwanted electrical impulse that causes ectopy. The scar tissue created during an ablation causes scarring that blocks the passage of the extra signals behind or within its confines. No extra signals, no extra beats. You'll still have an electrically disordered heart, but it can't react to the extra signals in the left atrium because they can no longer escape the stockade of scar tissue the ablation procedure generates. That's it! My choice was to live with the typical progression of AF to require more of the drugs, or switch to different, more potent, more toxic, ones over time........................or be ablated. Guess which I chose. No, really, go ahead.......

Note that your EP may be on to something that I'm not privy to, and for which you appear to have little understanding or little appetite. Perhaps tikosyn will do the trick....for now. If that reduces your symptoms, including any sleep loss, anxiety, problems with activity or balance or eyesight, or even just the thumping and bumping inside your chest wall when you have the AF and any PACs going on, then for now at least, you might be okay. It's a personal choice. But if your EP is averse to ablations, I would welcome an explanation, including a risk assessment of your morbidity over time if any drug quickly loses its potency and you are truly in permanent AF.



Edited 1 time(s). Last edit at 10/04/2024 03:46AM by gloaming.
Re: Treating A-fib with Tikosyn (Dofetilide)
October 04, 2024 08:23AM
Tikosyn can work for people, at least for awhile. Your Dr. has decided to to pursue this as the next step. If the Tikosyn fails, and you are still having symptoms, I think he may then offer Ablation strategy, unless there is something in your medical situation contraindicating it.

I agree with Gloaming that keeping your heart rate down while in AFIB is very important. The higher the rate over what your normal HR while in NSR will cause proportionally more symptoms. Your HR should fluctuate while in AFIB, do you know what range it has been beating at? Do you have an EKG reading of your HR while in AFIB? or a reading using a hand-held device?
Re: Treating A-fib with Tikosyn (Dofetilide)
October 06, 2024 08:56PM
gloaming:

I do not know if my EP is a good one or not. I chose him based on the fact that he could see me quickly rather than wait 2 months for another PE (one who does do Ablations). I don't know why my EP does not do Ablations. I felt desperate to get some kind of treatment going as I did not like how I am feeling these days. I am in A-fib ALL the time.

My ventricular rate is usually below 100. My pulse always irregular. My Kardia app always says "Possible Atrial Fib". I am always weak, prone to dizziness, have very little appetite, I only feel good lying down.

I am willing to try the Tikosyn and then consider Ablation if the Tikosyn doesn't work as it should.

Thanks for your response.

Attached is a screen shot of my Kardia.
Attachments:
open | download - Screenshot_20241005-155525_Kardia.jpg (398.8 KB)
Re: Treating A-fib with Tikosyn (Dofetilide)
October 07, 2024 03:08AM
When you're in afib, which is all the time, you say your heart rare remains under 100. That's good. Do you feel symptoms? Does the afib impact your quality of life?
Re: Treating A-fib with Tikosyn (Dofetilide)
October 07, 2024 05:42PM
Carey,

I'd say most definitely that my A-fib affects my quality of life in a negative way. I tire very quickly if I am up trying to do something. I don't have energy to go to gym, or walk very far. Lack of appetite causing weight loss ( down to 175 lbs from 200+ last year) , slight dizziness when I stand from lying down. My vital signs are pretty much in normal ranges. BP 121/81, pulse 98 this morning, with my Kardia showing "Possible A-fib"

I guess some of my symptoms could be side effects of Eliquis, not sure.

Thanks for your reply.

Hank Pfister
Re: Treating A-fib with Tikosyn (Dofetilide)
October 07, 2024 06:47PM
Then it definitely makes sense to pursue drug treatment or ablation. None of the symptoms you describe sound like anything Eliquis would be likely to do, though of course it's not impossible. It's pretty side effect free for most people.
Re: Treating A-fib with Tikosyn (Dofetilide)
October 07, 2024 08:33PM
Quote
Pfestus1
I tire very quickly if I am up trying to do something. I don't have energy to go to gym, or walk very far.

I guess some of my symptoms could be side effects of Eliquis, not sure.

A possible side effect from Eliquis is anemia. If there is anemia, it can cause lack of energy, so might be worthwhile to make sure this is not an issue with you. If there is anemia, then excluding internal bleeding as a cause would also be something to follow up on.
Re: Treating A-fib with Tikosyn (Dofetilide)
October 11, 2024 01:36AM
After 2 ablations, I started having episodes of atrial tachycardia/ flutter which required cardioversion to gain sinus rhythm.
Sotalol and Multaq were not effective in keeping me in sinus. I started Tikosyn about 18 months ago.and it has been very effective. No episodes of afib or flutter and I have tolerated it very well.
Hopefully it continues to work…
Re: Treating A-fib with Tikosyn (Dofetilide)
November 08, 2024 03:39PM
So my EP put me in the hospital on Oct 23rd for a 3 day Tikosyn administration. On the 3rd day I was still in Afib, so they cardioverted me into NSR. Then sent me home. I felt great the next 2 days, remaining in NSR. Mid morning on the 3rd day I reverted to Afib. My symptoms returned. Tired easily, slight dizziness, esp when standing, less appetite. Not as bad as prior to starting Tikosyn, but enough to make me a lazy slug.

My EP wanted to go to Amiodarone next, but he also though an ablation would be a good option. (he does not do ablations) I did a little searching on my options for the ablation and decided to try for the bigger hospital at UVA in Charlotteville VA. My EP sent a referral to UVA and I am now waiting for the scheduling dept. to contact me.

Hank Pfister
Re: Treating A-fib with Tikosyn (Dofetilide)
February 13, 2025 05:57PM
Your case sounds remarkably like mine. Dofetilide worked pretty well for three years, but in the next three years the reoccurrences of Afib requiring cardioversion increased in frequency until more aggressive treatment was required. "Afib begets Afib" appeared to be my future.

I did my homework and decided on a Cox-Maze IV. Two months post-op I am recovering with just a few occurrences of flutter. Still on dofetilide and Eliquis but expecting to eliminate them soon. I am back on my bike and riding an hour each day.

My personal case, speaking with multiple EP's (including Dr. Natale), led me to the Maze. Fortunately, I was able to have treatment locally at BJC in St. Louis.
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