Dofetilide (Tikosyn): adjusting dosage

Posted by elizabeth1941 @elizabeth1941, Sep 1, 2019

Has anyone on this Afib blog used Tykosyn for their Afib and if so what is your experience

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@soph

What you say makes a lot of sense. We talk about "afib" and we all experience it in different ways. My first attack was in March 15 and 7 hours and a diltiazem drip cured it. 2nd was 3 years later, 3rd a year later, 2019. Then 3 together once a week when I was adding Claritin for allergies. Those 3 all stopped by themselves at home after a night's sleep. (Nothing since then and I definitely will not take any more Claritin, even though it was cleared by pharmacist.) So I assume that Dofetilide (Tikosyn) is still helping. It sounds like I have a relatively mild form of afib. Good luck to you!

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I just started on it…too soon to tell, but I will post if I notice changes.

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@maryrohrer1

Yes it works for a year or so then not as effective. Going in for an ablation Fri

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Hi @maryrohrer1,

How are you doing? Are you able to share more about your ablation procedure? I sincerely hope it was successful and look forward to hearing from you.

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@kanaazpereira

Hi @maryrohrer1,

How are you doing? Are you able to share more about your ablation procedure? I sincerely hope it was successful and look forward to hearing from you.

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Ablation was Sept 6 2019 at Mayo Rochester. Dr Deshmakh was the EP doctor. Ablation went very well. I was very pleased with his care and talent . He is the co training director for the EP clinic.
I had a very positive experience at Mayo where the care was superb. Everyone from each nurse to each doctor put my care as the most important thing they were doing at the moment. I was nervous of course but if I had to do it again, I would as it was not nearly as bad as I thought it was going to be. All went smoothly. I went from 49.5% in afib for month of August to currently 1.2% burden to date (Nov 6) from ablation date ( Sept 6). I would call that successful. I am still on tykosen until followup Dec 2019 which will determine if I will remain on tykosen at that time. Since I am traveling for Christmas out of the country I am sure I will remain on tykosen until January.Tykosen is very expensive and costs about $110 per mo for a 90 day supply. I am on 250 mg 2x day. I continue on a blood thinner, Warfarin, to which I have a Roche meter and test my INR and report result 1xweek to anticoagulation clinic. I am back to walking 2 mi per day at 3.1 mph daily and 7 resistance training machines daily. I am pleased and do not regret doing the procedure.
I could travel after about 3 weeks domestically but not internationally for 2 months following procedure. I had a TEE, ECG, Chest xray, blood work, all prior to procedure. My daughter ( Cardiologist) accompanied me to the TEE and ablation procedure. I just hope it sticks! 70% ablation success rate so there is 30% will not be successful. I am lucky so far!

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@maryrohrer1

Ablation was Sept 6 2019 at Mayo Rochester. Dr Deshmakh was the EP doctor. Ablation went very well. I was very pleased with his care and talent . He is the co training director for the EP clinic.
I had a very positive experience at Mayo where the care was superb. Everyone from each nurse to each doctor put my care as the most important thing they were doing at the moment. I was nervous of course but if I had to do it again, I would as it was not nearly as bad as I thought it was going to be. All went smoothly. I went from 49.5% in afib for month of August to currently 1.2% burden to date (Nov 6) from ablation date ( Sept 6). I would call that successful. I am still on tykosen until followup Dec 2019 which will determine if I will remain on tykosen at that time. Since I am traveling for Christmas out of the country I am sure I will remain on tykosen until January.Tykosen is very expensive and costs about $110 per mo for a 90 day supply. I am on 250 mg 2x day. I continue on a blood thinner, Warfarin, to which I have a Roche meter and test my INR and report result 1xweek to anticoagulation clinic. I am back to walking 2 mi per day at 3.1 mph daily and 7 resistance training machines daily. I am pleased and do not regret doing the procedure.
I could travel after about 3 weeks domestically but not internationally for 2 months following procedure. I had a TEE, ECG, Chest xray, blood work, all prior to procedure. My daughter ( Cardiologist) accompanied me to the TEE and ablation procedure. I just hope it sticks! 70% ablation success rate so there is 30% will not be successful. I am lucky so far!

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Dofetilide is the generic for Tikosyn. Are you sure of what you're taking? I only pay $5 a month for it. Though I definitely have fine insurance. Good luck. Terrific that you had such a good experience.

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@soph

Dofetilide is the generic for Tikosyn. Are you sure of what you're taking? I only pay $5 a month for it. Though I definitely have fine insurance. Good luck. Terrific that you had such a good experience.

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Oh yes. I take dofetilide the generic version of tykosen. Yes it s $110 per mo because I am with a drug supplement for Medicare part D.
Not a medicare advantage plan, not a private retiree plan from the private sector or the state or federal retiree plan.
Yes cheaper on an advantage plan but I want freedom of choice thus have a medigap plan.

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@bergem

I went to Mayo Clinic in MN, for evaluation of my dyspnea and A Fib.I was told that Ablation success rate is low and the complications rate are high ( possibly due to my age 90 , CAD, 10 coronary stents ,etc), so they suggested Tikosyn which I am taking for 2 weeks now . Feeling better since, able to do treadmill for 35 min and 1.5 miles daily. Does anyone have any history of Tikosyn treatment?
Thank you
bergem

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Hi Didi,
Here’s some information about Tikosyn (dofetilide): http://www.mayoclinic.org/drugs-supplements/dofetilide-oral-route/description/drg-20063516

I’m tagging @2880 @vermontrob @crazyheart @predictable, and hope they will join in with some more information. Since Tikosyn belongs to the group of medicines known as antiarrhythmics, I’d also like to introduce you to @woodieryan @jimana who have written about antiarrhytmic drugs; do you have any insights to share with @bergem?

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I went to Mayo Clinic in MN, for evaluation of my dyspnea and A Fib.I was told that Ablation success rate is low and the complications rate are high ( possibly due to my age 90 , CAD, 10 coronary stents ,etc), so they suggested Tikosyn which I am taking for 2 weeks now . Feeling better since, able to do treadmill for 35 min and 1.5 miles daily. Does anyone have any history of Tikosyn treatment?
Thank you
bergem

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I have Medicare part A and B and Anthem blue for part D but I am paying $90,00 per month (60 capsules) and it is generic Dofetilide not Tikosyn. Any one can suggest how to get it at cheaper rate?

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I was with fibrillation for more than a year. Tried electrocardioversion and a number of medicines but no result. Then in the nov of 2018 was suggested to try Tikosyn. Despite of the danger it poses I decided to take it. After first dose in hospital my pulse rate went at alarming hig but I was not feeling anything and when the nurse came to attend me I talked to her. After this the dose was reduced and metaprolol which I was taking Fira year was stopped. I am taking it now for more than a year and I am in sinus rhythm. No side effects. Hope it continues so.

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@soph

Wow, scary prices. I pay $5/month. It used to be $40 before it went generic. I guess I'm very lucky with my insurance!

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It depends also on which state you live. Some states have cheaper rates than others

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