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

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Yes, I am a Tikosyn user for over the past year. I have a lifetime of extra beats that in the past 4 years, turned into Afib. Over the years, I've been on all the heart meds and this one is new and it is lactose-free which is important to me since I have milk intolerances and all others exacerbate my arrhythmia. Tikosyn, 200mg am/pm worked well with acebutolol for tackycardia for me. Wanting to get rid of the Afib, the doc did a 5 hr. cryoablation in Jan. After, because I was terribly unstable (in my 70s) he jacked me up to 400 mg am/pm where I remain. My Afib is gone after 3 mo. I am in sinus rhythm., but still go into tacky when eating foods I'm intolerant of, and for that, I just pop an acebutolol and if serious, 0.25 mg. clonazepam. I am also on the anticoagulant, Savaysa, which also is dairy free. Tikosyn works well for me, and my regimen of heart meds is practical and not overdone. But after that ablation (my 3rd.), I am left with MCAS, a mast cell illness, probably because of the massive antibiotics given in surgery.

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Tykosyn was recommended but after reading electrophysiologists comments that it stops working after a few yrs, I opted to try Sotalol. Cost of Tykosyn is very prohibitive also. Flecainide stopped working 2nd yr in AFTER ablation. With Sotalol, I have 4-6 hr aFib episodes every 4 months so far…1 yr with Medtronic pacemaker. So it works better for me. PM got rid of my pauses & slow HR. Hope this helps. Sotalol least cost of the 3 drugs I mentioned.

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Yes, make sure you get the cheap generic of it "dofetilide". I've used it 4 years. No problem from it. And I went the first 3 years with no afib. I also take a calcium channel blocker, diltiazem, and warfarin in order to avoid strokes. I think it took my body a few months to get used to all this (I am 85) but after that I felt normal. One thing – I went to the hospital for my first 3 attacks (in 4 years.) Then I asked my nurse-practioner cardiologist if I could try staying home to see if afib stopped on its own. She said "No." But later I asked my cardiologist, her supervisior, and he said try it. So I did. It only took the same 7 hours to stop outside of the hospital, no drip of extra medicine, and a much more pleasant experience. So this is something to ask about.

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@soph

Yes, make sure you get the cheap generic of it "dofetilide". I've used it 4 years. No problem from it. And I went the first 3 years with no afib. I also take a calcium channel blocker, diltiazem, and warfarin in order to avoid strokes. I think it took my body a few months to get used to all this (I am 85) but after that I felt normal. One thing – I went to the hospital for my first 3 attacks (in 4 years.) Then I asked my nurse-practioner cardiologist if I could try staying home to see if afib stopped on its own. She said "No." But later I asked my cardiologist, her supervisior, and he said try it. So I did. It only took the same 7 hours to stop outside of the hospital, no drip of extra medicine, and a much more pleasant experience. So this is something to ask about.

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I checked w drug plan, and Dofetilide was expensive…we calculated $5000. Over 5 yrs. 3 times cost of Sotalol. Does that sound like your cost? soph@soph ? Just curious. That was my copay…so I would have been in donut hole quickly and take 4-5 other drugs.

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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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@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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Thank all of you for your responses.. My afib is peristant afib. Doctor did cardioversion which didn't work.then wanted to put me in hospital to load Tikosyn. I went into sinus rythym after first dose. Just been less than 2 weeks,still in rythym. I wasn't told it would quit working after while. I'm 78 and reading about possible side effects is scary

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@elizabeth1941

Thank all of you for your responses.. My afib is peristant afib. Doctor did cardioversion which didn't work.then wanted to put me in hospital to load Tikosyn. I went into sinus rythym after first dose. Just been less than 2 weeks,still in rythym. I wasn't told it would quit working after while. I'm 78 and reading about possible side effects is scary

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Terrific that Tikosyn worked for you. I've taken it for 4 years without side effects. I was tired for the first few months of that and Diltiazem, but adjusted. I'm 85 now. In my hospital, it's the drug of choice for afib.

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Thank you so much for your reply. I hope when I am your age it will still be working for me

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Hi, I was put on tik. three years ago. Before that, I had four cardioversions elec. and they didn't last since I also have MVP. The tik worked well for 2.5 years. After a very stressful family Christmas 2018, the tik stopped working. But while it worked, I appreciated it. The cardiology team is taking a manage the afib by slowing the heart with Metroprolin.(sp). It slows my heart rate so I feel ok, not great, but I prefer it to open heart surgery to put in a new valve, and then maybe they can control the afib. About 25% of my former self, at 71, it takes some getting us too. They did recommend I move to a lower elevation where the heart doesn't have to work as hard. At 4400ft and relocating soon to 2200ft. I have noticed more energy at lower altitudes. You do have to go into the hospital to download tik. Try rate management, lots cheaper. Think of afib as a variation on a theme of a normal heart beat. My heart needs to do alittle dance to move the blood along. (it's hard on the kidneys…drink unsweetened cranberry juice daily).

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