Anyone have to give up Tikosyn?

[37Polly]

My EP checks my q t line on 12 lead ECG periodically to make sure my q-t line doesn’t get too long. (Potentially fatal😬). This week he “didn’t like the look of it after I recovered from a five day Afib seige following the second Pfiser jab, and reduced my dosage to 2.5 from 5. I am hopeful it is as effective, and also hoping the next ECG looks better. A bit concerned because Tikosyn was not tested on elders or females. I am both. Anyone relate?

[Hidden]

Just a heads up that dofetilide (tikosyn) is apparently not available in Europe or Australia. You may not get as many replies as normal.

[37Polly in reply to Hidden]

Thanks. I have noticed this in the past. Anyone know why?

[Nanopiano]

It’s been a few years since I was put on Tikosyn, but for what it’s worth, I didn’t have any adverse reactions after spending three days in the hospital while they made sure it wasn’t going to kill me. Having said that, it didn’t help the afib situation and I was eventually taken off. The only thing that alleviated my afib was a Maze procedure done two years ago and have been afib free since. I’m 72 and female. Good luck in your journey, 37Polly!

[37Polly in reply to Nanopiano]

I understand that it works better for persistent rather than paraxilmal afib.

[Hidden]

I’m an "elder" male and I’ve been on Tikosyn for some time. I found I had to be vigilant about drug interactions. My PCP, EP, and cardiologist all agreed to get the Covid jab. (Pfyzer) It’s been two weeks after #1 without major afib, a couple of times it tried to start (as usual), but none continuing.

I have other conditions for which I take medication and thought of giving up Tikosyn because of interactions. Haven’t done so but think about it a lot. My afib is "controlled " with it and I’m concerned what would happen if I discontinued it. My advice, as a non-medical person, is to continue and make sure your Qt interval is within normal limits.

[37Polly in reply to Hidden]

Thanks for sharing your experience with Tikosyn . I too have been far more successful limiting afib and aflutter with this drug. Have been on it three years. I am hoping I can continue with the smaller dose. I will have another ecg in a few weeks🤞. If not I may try ablation but hope to avoid it.

[37Polly in reply to 37Polly]

BTW Now three months later. All is well with reduced dosage. I had one day episode since. A hard day with news my sister was dying and forgot my beta blocker, but converted on my own with only rest. Happy with less meds though doc reminds me to increase will mean another hospitalization 😣. But so far, so good.

[etheral]

Hi, I am 69yo male and have been on Tikosyn for 3 yrs without any arrhythmias or side effects. Previously I was in Afib and heart failure. The drug was not approved in Europe because the EU institution that approves drugs found it to be ineffective. Possibly the cost of 3 days in the hospital and the drug itself had something to do with the decision, although the above was the stated reason. I read some of the studies they mentioned and the results were equivacal. The dose I take is 500mg twice daily. If you are not having side effects and Tikosyn is working for you I certainly wouldn't hesitate to continue it. It has been a life saver for me. Best wishes...

[lovetogarden]

My EP is suggesting I switch to tikosyn, since sotalol is making me very dizzy and tired. Thanks for sharing your experiences w tikosyn and helping me to ponder this decision.

[Beemer11 in reply to lovetogarden]

Did you ever try tikosyn. My dr wants me to. And I’m afraid

[lovetogarden in reply to Beemer11]

Yes, I finally gave in. Just got home from the hospital loading yesterday. And frankly, I feel terrible. Have now had 6 doses, they bumped it down from 500 to 250 after 1st dose. I feel far worse than I ever felt on sotalol. And they want me to take metoprolol too. That has always made me feel miserable. Not a very happy camper at the moment. Have to give it some time I guess. But I do have a call in to the EP and his nurse. Hope I hear from them tomorrow.

[Beemer11 in reply to lovetogarden]

How are you doing with the tikosyn now. I hope your doing better

[lovetogarden in reply to Beemer11]

Sorry to be such a downer…. Others have had good experiences with it.

[Beemer11 in reply to lovetogarden]

Good luck i agree give it time, hopefully it will work.. feel better

[Beemer11 in reply to lovetogarden]

My dr wants me to also very nervous but been on multaq and its isnt helping my afib comes and goes all day in and out.

[lovetogarden in reply to Beemer11]

My feeling was it was worth a try. The 250 dose made me miserable though and I wasn’t getting used to it. Lasted about 10 days on that dose. Saw the EP last Thursday and he suggested I try the lowest dose, 125. I’m a bit better, but still not feeling great. It is stopping my tachycardia though, so that’s good. He was quite surprised, said he’d used this med with a lot of patients, never had anyone with my reaction, but he was quite understanding and agreed that feeling miserable wasn’t an option! Giving it a week to see how it goes. Then maybe back to a slightly higher dose of sotalol, or ?? He may have other options. Worth a try to see if it helps. Not fun being in the hospital, but it is the safest way to start. Good luck!!

[37Polly]

Don’t beat yourself up. I take TIKOSYN very successfully but my best friend started it and was miserable, in afib almost constantly. She asked to go back on flecainide…and has been fine since. Did not work very long for me. We are all different. Listen to your body. Good luck