Tykosyn use

Posted by elizabeth1941 @elizabeth1941, Sun, Sep 1 1:03pm

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

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.

Liked by lucky1038

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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

Liked by lucky1038

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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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It's great to see that dofetilide is working for you and all the others. I just wanted to add that all anti-rhythmics stop working eventually and one learns to be happy for the time that it does. Both dofetilide and sotalol are notorious for causing QT prolongation — something to avoid at all costs hence the initial loading at the hospital. Unfortunately I did not pass that test years ago when they tried it. Now that I've had a number of ablations they want to try sotalol and see if that works. It's a long shot but a few days stay in the hospital is a small price to pay. A lot of drugs have scary side effects but the scariest of them all is amiodarone (or Vitamin A as they call it) It is highly toxic but also the only drug that worked for me after I had tried all the rest. And yet I took it for 6 years or so before it stopped working. I just had to have frequent monitoring of liver, thyroid and lung function. As for cost, I am astonished to hear how expensive the generic version can be for some drug plans — glad there are alternatives. Otherwise I would look for a better drug plan and switch.
I did have open heart surgery to replace 2 valves and fix a 3rd one… it was no picnic but I really didn't have a choice. I am also on metoprolol and am hoping it helps keep me in sinus since I am not taking anything else. I was fine for about 14 months after my 2nd ablation, was cardioverted, which only worked about 6 months. I am quite happy with cardioversion at 6 month intervals but my EPs feel I should give sotalol a shot so will do that next time I have an episode. Has been quite a journey.
Mary

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Though Amiodarone is considered the best for "rhythm control", I'm scared to use it because some people have really bad reactions from it = and the problem is that it has such a long half life that even if you stop taking it, you continue for a long while to have the bad reactions. It's great when it works for people. I know a 92 year old who's been on it for 20 years!
I wonder what people mean when they say that "all anti-rhymics stop working eventually." Do they stop working or just work less? The older we get the more frequent afib attacks might happen anyway. However, some doctors believe that old people only need "rate control" i.e. heart rate speed, and not rhythm control–(-is this something more overarching? Regularity rather than rate?) And at what age are we truly "older." Metoprolol is "rate" control. Many of us have been given both rate control and rhythm control. Sounds like you have good and careful doctors, Mary.

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I guess it comes down to tradeoffs. I was terrified of taking amiodarone for years until I started having episodes that were really intolerable. At that point, you just want it to stop and since amiodarone was the only thing that worked so I just learned to live with my fears. I think with everything there are exceptions, such as the 92 year old who took it for 20 years. Generally though the heart's electrical system somehow finds a way to break through and it's only a matter of time when the drugs stop working — meaning you will have episodes. Whether you will have fewer is another question and an interesting one. For some reason I never really considered that possibility. Most of us would rather not have any, or just short ones that convert on their own. It also depends on how you feel during an episode. Going on amiodarone is a big decision and even though I had no adverse side effects I do not plan on starting it again anytime soon. I would rather opt for a 3rd ablation if it came to that.

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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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@maryrohrer1 All the best on your ablation tomorrow..
Mary

Liked by lucky1038

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@sayaboleh

I guess it comes down to tradeoffs. I was terrified of taking amiodarone for years until I started having episodes that were really intolerable. At that point, you just want it to stop and since amiodarone was the only thing that worked so I just learned to live with my fears. I think with everything there are exceptions, such as the 92 year old who took it for 20 years. Generally though the heart's electrical system somehow finds a way to break through and it's only a matter of time when the drugs stop working — meaning you will have episodes. Whether you will have fewer is another question and an interesting one. For some reason I never really considered that possibility. Most of us would rather not have any, or just short ones that convert on their own. It also depends on how you feel during an episode. Going on amiodarone is a big decision and even though I had no adverse side effects I do not plan on starting it again anytime soon. I would rather opt for a 3rd ablation if it came to that.

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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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