Tikosyn (Dofetilide)?

[malaekahana]

Is anyone on this forum using this drug? Yesterday I met with a cardiologist who recommended it. (He was selling ablations, but when I said I thought I'd try medications for a while, this was the one he recommended.) Apparently it is less toxic in the long run than Amiodarone, but it requires three-days in the hospital at the outset to monitor no adverse reactions (which can include cardiac arrest). That alone sends up red flags for me, in addition to the numerous possible adverse side effects I read about online. But, recognizing that most medications are toxic to something in our systems, I recognize that we take them with a grain of salt. I wonder if this drug is maybe prescribed more in the U.S. (where I am located) than in G.B. So I am curious about the experiences of others. Thanks in advance!

[BobD Volunteer]

Not licensed in UK or Europe so no experience this side of the pond.

[etheral]

This drug literally saved my life. While in afib I went into pulmonary edema (fluid in the lungs) because of low cardiac output due to old MI and further reduced cardiac output due to afib . There are no long term problems with it su h as Amioderone. The drug must be administered in the hospital so you can be continuously monitered for 3 days. EKGs are taken frequently so the Q-T I nterval can be assessed. This will lower the chance of Ventricular Arrythmia which can cause arrest. In the unlikely chance this occurs you will be immediately treated.There are no longer term side effects such as thyroid or liver or lung problems. In my case I converted to NSR without a subsequent cardioversion whi h is frequently needed. It is just one pill e very 12 hrs. I have been taking Tikosyn for 4 years now without any arrythmias or side effects. The main n problem is the boredom of sitting in the hospital for 3 days. I highly recommend a trial of this drug. I am a 71yo male. Best,etheral

[GooseEggs]

Hi Malaekahana, my mom was put on Amiodarone and it was quickly killing her (scarring her lungs, i.e. pulmonary fibrosis). She also had ALL the other serious side effects that appeared after taking a low dose of Amiodarone for just 4 to 6 weeks. Her cardiologist refused to believe it was possible but another Dr confirmed and said to take her off Amiodarone right away. She's now on Dofetilide (and stayed in the hospital for 3 days to monitor it) and is doing fine on the minimum dosage of Dofetilide. (She is 93 and also had 2 ablations at age 92.) She did very well with the ablations, easy recovery for her. However she's a tough Afib case and the Dofetilide is an extra layer to help keep her in SR. If it were me, and you had confidence in a good EP cardoiologist, I'd do the ablation sooner than later and try to live without the med. all the best!

[2023AFibber in reply to GooseEggs]

TY for the amiodarone info, my Dr keeps pushing it at me and I am scared to death of it as I already have empyema, your comments just confirmed my fears. He said I could do Tykosyn, so may try that, all the other BBs are destroying my brain/body bit by bit. Recca

[gdp333]

Amioderone Sucks...gave me neuropathy in my feet and changed my life Plus did nothing for my heart beat. Doctor put me on Tikosyn with a 2.5 day hospital observation and it worked. Started on 250 mg for 3 years then 500 mg for 2 years. Heartbeat kicks off beat every now and then but mostly stays in sinus. Trying to avoid ablation. I say go for it. Works for me. Good Luck and Blessings. G Price W Clev. Ohio

[Sharp5flat9]

I found that amiodarone worked well as far as Afib was concerned but the side effect were worrying…..particularly a threat of eyesight damage.

I am now recovering from a successful ablation 6 weeks ago. Recovery is slow and tough. I just hope the initial success stays for the longer term.

[kocoach]

Hello malaekahana I was on the Tikosyn (dofetelide) study when the drug was first being introduced and trying to get approved back around 1995. I started having episodes of blacking out mentally not physically and from then on was diagnosed with atrial fibrulation. I was put in the hospital for one month and was put on an expermental drug (at the time) called Tikosyn (dofetelide). It was a blind study but my Dr. Philip Sager told me I was on the drug, not the placebo and it worked really well as I was running seven miles a day, training other fighters and feeling pretty good for about 22 years and all of a sudden it stopped working. I had to stay in the hospital for 3 days when first put on it which was a protocol at the time and when they take you off of it as well. The one thing I had to watch out for was taking other medications while on it as there were so many interactions with it. Then about five years ago afib came back and I was taken off of Tikosyn and put on amidarone which is so-so as far as keeping me in sinus rhythm. I hope Tikosyn (Dofetelide) works as well for you as it did me! Amiodarone is the last resort medication given, no problems with it for over 5 years now (Thank GOD) it just doesn't work for me as good as Dofetelide did. Wishing you the BEST!

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[Snowgirl65]

I was on Dofetilide for a couple years and had no side effects whatsoever. I wasn't too happy about having that 3-day hospital stay where they measured my urine output, but I supposed it was necessary.

[Hidden]

I was on Tikosyn for 3 years. I went to the ER and was admitted to the hospital because afib had caused my heart rate to go super high. The doctor recommended going on Tiksoyn since I had been having frequent afib episodes and was already in the hospital. I converted into sinus rhythm 2 hours after my first dose! I stayed in sinus rhythm for 3 years and only had a couple of breakthrough episodes of afib during that time. The breakthroughs only lasted a few hours. I had no side effects while on Tikosyn but you do need to be careful if you travel to different time zones. I was told that Tikosyn has a 2 hour window for taking the medication. For example, you should take Tikosyn every 12 hours. Let's say you take it at 8am and 8pm if you forget to take it at 8am then you can take it up until 10am otherwise skip the dose. It is dangerous to take the medicine less than 10 hours apart. So if you travel you need to make sure that you do not take the doses too close together. Good luck to you! I would give it a try and if it doesn't work you know that you tried all of your options. Amiodarone is too toxic tp be on long term.

[malaekahana]

Thanks for the info! I was not aware of the timing issue. Presumably we will cover that when/if I go into the hospital to be put on it.

[Ctchrise]

Hi-I started on Tikosyn generic in March of this year. They started me on 250 mg twice a day but I converted to sinus rhythm within a couple of hours so they cut the dose to 125 mg twice a day which is the lowest dose. I will stay on this dose forever. So far, I feel good with minimal side effects. They also cut my Metaprolol from 50 twice a day to 25 once a day because my BP was low in the hospital. I think that was giving me more side effects so I feel much better on the lower dose even with the Tikosyn. The only concern with Tikosyn is kidney issues so they do blood work to check your kidney function. I’m 71 and it hasn’t affected my kidneys at all. I’ve also had 3 ablations and would recommend it. I had 7 years free of Afib. Good luck.