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Feedback, Please...

Posted by Catherine 
Feedback, Please...
July 08, 2019 08:26AM
Dofetilide/Tikosyn: Is anyone familiar with this drug? It is intended to regulate rhythm.
Re: Feedback, Please...
July 08, 2019 10:25AM
Yes, I've taken it and know several others who have also. It's usually effective and relatively low on side effects, but it requires a 3-day hospital stay to start it, and not everyone can take it. You'll find out during that 3-day stay if you can or not. The one thing others told me about the drug before I took it and I found to be true is that it becomes more effective with time. By that I mean it will be more effective after a month or so than it was during the first week.

Did you have specific questions?
Re: Feedback, Please...
July 08, 2019 01:41PM
I was on it for several months last year leading up to my Natale ablation.

It really didn't work that well for me during that time. However, it worked better than anything else at the time.

It's also possible that had I remained on it for a longer period if time that it may have worked better.



Edited 1 time(s). Last edit at 07/08/2019 01:51PM by rocketritch.
Re: Feedback, Please...
July 12, 2019 01:24AM
Tikosyn worked for me for a few years. I was one of the lucky ones that converted on my own after taking the first dose of Tikosyn in the hospital and didn't need a cardioversion. I believe I had to take it three times a day. That was sometimes difficult to remember.

I recommend getting an ablation instead of doing the drugs. I did the drug gig for seven years, trying a new one after each one failed. I wished I would have went the ablation route a lot sooner.

Good luck.
Re: Feedback, Please...
July 19, 2019 03:03PM
One week out of the hospital today. The plan was for me to go the Tikosyn route for 5 doses. I took the first dose with lunch and it went slowly downhill from there. I became so sick to my stomach I was given a dose of something thru the IV. That little voice said “D, no more”, so I refused the second dose. They weren’t so happy with me the next morning. I had to mention another drug which the NP Pooh-poohed. She relayed my choice to the EP and he told her to have me try it. That was Propafenone. My heart went back into rhythm after the cardio version. So far, so good. But I had to come up with an alternative. Quality of life is my mantra. The EP said when this stops working, he’ll do another ablation. I don’t think so. I want another set of eyes/hands. Dr. Santangeli should be back from his honeymoon. I plan to change tracks and get his opinion. It will be awkward, no doubt, because I am in the Penn Presbyterian lane, not the HUP lane. It’s all Penn Med but they’re separate and distinct entities. Someone has already accused me of doctor shopping. I’ve been accused of worse, I suppose. But it is very disheartening.
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