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

@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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Paroxysmal A-Fib, 69, female, slim, in good shape: I was just in hospital for 4 days for dofetilide adjustment, heart cath and trans-esophageal ultra sound. My valves are okay for a while yet. Docs doubled the dofetilide. Outside of being in A-fib almost constantly now, I am yawning and sleepy all the time right now. Has anyone else experienced this?

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@lizzy102

Paroxysmal A-Fib, 69, female, slim, in good shape: I was just in hospital for 4 days for dofetilide adjustment, heart cath and trans-esophageal ultra sound. My valves are okay for a while yet. Docs doubled the dofetilide. Outside of being in A-fib almost constantly now, I am yawning and sleepy all the time right now. Has anyone else experienced this?

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@lizzy102, I moved your message to a similar discussion called "Dofetilide (Tikosyn): adjusting dosage." I did this so that you can meet other members who are taking and talking about dofetilide (Tikosyn), like @elizabeth1941 @2880 @vermontrob @lifewisemap @maryrohrer1 @texas14 @predictable, and hope they will join in with some more information and their experiences. Click VIEW & REPLY to read through past posts.

Lizzy, How are you feeling on double the dosage? Do you feel it is the medication that is contributing to the yawning and feeling sleepy?

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Dofetilide is a dangerous drug. Must be supervised by an Electrophysiologist Cardiologist. You need to let your EP Card know your physiological reactions.
If in AFib all the time even part of the time must be on a blood thinner. AFib sucks if you re symptomatic. I am! Hate it.
Was intermittent then went from being in AFib about 10% of the time to 50% . Miserable symptoms. Short of breath, heart feeling like fish flopping around, tired, weak.
Had an ablation which helped immensely.
Still on dofetilide. But it eventually will stop working effectively.
Right now so far so good.
Working w your EP Card is very key.

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Also, know your triggers. Caffeine, alcohol, stress are notables.

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@lizzy102

Paroxysmal A-Fib, 69, female, slim, in good shape: I was just in hospital for 4 days for dofetilide adjustment, heart cath and trans-esophageal ultra sound. My valves are okay for a while yet. Docs doubled the dofetilide. Outside of being in A-fib almost constantly now, I am yawning and sleepy all the time right now. Has anyone else experienced this?

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I was on Tikosyn 500 mg 2xd for about 2 years with good success prior to ablation .
Have you explored having an ablation?
I would suggest contacting Dr Andrea Natale in Austin – the best in the field .
Best of luck ,

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@colleenyoung

@lizzy102, I moved your message to a similar discussion called "Dofetilide (Tikosyn): adjusting dosage." I did this so that you can meet other members who are taking and talking about dofetilide (Tikosyn), like @elizabeth1941 @2880 @vermontrob @lifewisemap @maryrohrer1 @texas14 @predictable, and hope they will join in with some more information and their experiences. Click VIEW & REPLY to read through past posts.

Lizzy, How are you feeling on double the dosage? Do you feel it is the medication that is contributing to the yawning and feeling sleepy?

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I feel the doubled dose is responsible for feeling sleepy as that is no my MO at all. I usually have lots of energy (barring time I’m 120+ BPM when I get dizzy0.

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