Can anyone tell me about tikosyn: Anyone have... - AF Association

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Can anyone tell me about tikosyn

drdubb
drdubb

Anyone have any experience with this. I had an ablation last July, currently use flecainide and recently had 3 breakthroughs, one lasting about 26 hours. The PA for my electrophysiologist is talking about this drug. I've not heard any thing about it.

I'm currently 65, will be fully retired from work in 15 days, and want to start living. I really want a 10-15 year plan to deal with the AFIB. My understanding is that ablation early in the progression might be the way to fly in order to postpone the changes in the heart as long as possible. I have a slightly enlarged aorta and for some reason that plays into the decision about ablation.

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BobD
BobDVolunteer

Sorry this drug is not available here in UK or Europe so we can't offer any advice. Some US based members may.

It’s not available in Australia either

Tikosyn is very, very expensive. ($1500/mo a couple of years ago) It also comes with dangerous side effects for some. You have to be admitted to the hospital for a trial. They'll monitor you for 3 days with frequent ECGs. I failed the trial but experienced no side effects. I think that nothing will put me back in NSR.

I did check with my pharmacy and there is an inexpensive generic. It would cost less than my Eliquis

I take it and it got me a normal sinus rhythm for about 60 days. No longer effective. You do have to go into the hospital for 3 days or in other words your first five doses of Medicine. The reason they do that is to make sure your heart doesn't go into a bad rhythm. On the third day some convert to normal sinus rhythm. However, I did not. Had electrocardioversion and convert it to normal sinus rhythm rather easily. Unfortunately it did not last. It is extremely expensive. I think even the generic version that's available to me is around $600 per month. I had an ablation 3 weeks ago and the plan is to keep me on the stop for 3 to 6 months to see if the ablation does the trick. Good luck

BobL 123 takes it. He was asking me about taking magnesium and then listed his meds. Give him a shout

After finally going into permanent afib., going through unsuccessful cardiofversions and practically every AF drug, I've been on and off Tikosyn since 2/2016, Had to spend 3 nights in hospital so they could monitor and make sure of no bad ventricular effects. It worked almost 100% for 2 1/2 years. Like magic. No side effects. Then I went on a series of cruises and gained a lot of weight. Came back home and started having bouts of afib, which I attribute to a 12 lb. wight gain over a few short weeks.

I think that, due to the fact that I have a gigantic left atrium, the EP put off an ablation, but I finally had one July, 2018. Was fine for a few months without any meds after the first few weeks, did another cruise, gained more weight, tried a 3 1/2 day water fast and then bang, back in afib. Got re-started on Tikosyn in hospital at a lower dose, along with Nadolol, a beta blocker, and Rivaroxaban, which is my current status. I'm having abbreviated bouts (lasting a few hours) of AF every 2 weeks or so, but taking plenty of potassium and magnesium. I'm going on 70, so I'm not sure the EP is going to let me have a second ablation, but I intend to ask for it, if symptoms get much worse.

Tikosyn started out being VERY expensive, then a generic was introduced (Dofetilide) which is much more reasonable. I take the generic. It has been a great drug for me and many other people, if you read the web reviews. But, like all afib drugs, it eventually stops working, for reasons unknown.

thanks for the replies...confirmed what I thought. This condition is totally unpredictable, other than it will get worse. I'm going to push for a second ablation before I go to another drug. I will continue the flecainide until then.(although it makes me feel like *%&#) After the ablation ceases to work, I will try another drug. Hopefully, I can get 5 to 10 years. By then, there may be something new. (and yes, I need to lose some weight)

Thomps95
Thomps95 in reply to drdubb

Your decision is also what I'd do, given the replies. You're not permanent; ablation is a proven effective strategy of eliminating AF; and it's very common to need more than one - seems logical to follow up on the treatment plan that you started, rather than leap onto what sounds like an extreme drug. In the words of one site: "**Because Tikosyn can cause life threatening ventricular arrhythmias, it should be reserved for patients in whom atrial fibrillation /atrial flutter is highly symptomatic"**. Umm. And yes, for most people the burden of AF goes down when you pay close attention to general health (balanced diet, regular controlled exercise, sleeping patterns etc). I realise this isn't the case for everyone, of course, but it's certainly true for me.

wouldnt take it if i was you, you could permanently fuck your heart up

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