Tikosyn so far Success : I’m a 65-year... - Atrial Fibrillati...

Atrial Fibrillation Support

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Tikosyn so far Success

jsanta profile image
12 Replies

I’m a 65-year-old male that’s had three oblations and a cardioversion that have not been able to control my persistent a flutter.

My heart rate when the ablation’s were working was about 60 resting and could never get over 100. However I had a breakthrough about three months ago and my resting rate was 90 and if I walked 100 feet it would go to 150.

The only other alternative, because I had so ablations , was to try the medication Tikosyn with a cardioversion which I did yesterday.

I am now beating around 60 the Adema in my legs has gone down and I feel fantastic.

Because of the potential debilitating side effects they keep you in the hospital for three days and monitor To make sure you don’t go into any cardiac problems.

But I am very happy so far with the results let’s just pray it holds.

Will keep you posted.

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jsanta
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etheral profile image
etheral

Been taking Tikosyn for over a year. So far it has kept me out of afib and CHF. No side effects.. Can't believe it's not available in Europe.

jsanta profile image
jsanta in reply to etheral

No side effects? Great! that was my biggest worry .. happy for ya!How old are you? Previous ablations? What does CHF mean? What were your symptoms? Can you exercise? Sorry for all questions

etheral profile image
etheral in reply to jsanta

I am a 66 yo male living in Maine. I had a large MI (heart attack) 10 years ago. My ejection fraction (measure of cardiac output) was reduced to 30%. I went into Congestive Heart Failure which results in backup of fluid into the lungs and difficulty breathing after an attack of afib last year. Tikosyn converted my afib back to NSR and have had no afib or other arrhythmia since. This increases my cardiac output and have had no problems with shortness of breath since. I also take Eliquis, Entresto, and carvedilol. I am physically active, swimming, walking etc. I have experienced no discernable side effects from the Tikosyn. Please feel free to discuss any questions or problems. Apparently this drug is not available in the UK . Maybe because of cost of initial 3day hospitalization necessary to safely initiate it. My background is an Emergency Department doc. Wishing you the best.

redpine profile image
redpine in reply to etheral

Just curious, ethereal, does your insurance cover some or all of this medication? Out here a 3 month supply (with the insurance coverage I have) costs $850.00.

Very happy to hear that it's working for you.

jsanta profile image
jsanta in reply to redpine

They gave me a weeks supply at the hospital. I pick up my subscription tomorrow so I’ll let you know tomorrow. There is a generic version.

redpine profile image
redpine in reply to jsanta

I did not know about a generic version. Yes, please let me know. If this is affordable, perhaps I can switch over from the Amiodarone, which is toxic stuff.

etheral profile image
etheral in reply to etheral

I have Medicare Part D with a Medicare Advantage plan. iPay $250 for a 3-month supply when I am not in the donut hole. Then it cost me $500 for a 3 month supply as far as I know there is no cheaper generic available. Thanks good luck

jsanta profile image
jsanta in reply to etheral

Hey there I just picked up my subscription for 30 days and because I’ve met my deductible for prescriptions it was only $10!Dofetilide is the generic. So far I feel fantastic.

etheral profile image
etheral in reply to jsanta

Terrific! Glad you found an affordable solution.

Jlaine profile image
Jlaine in reply to jsanta

CHF stands for congestive heart failure. When your heart dosent perform adequately fluid builds up around it! Shortness of breath is also a sympthom of it as well.

dcadwallader profile image
dcadwallader

Hello, I thought I would add to the Tikosyn (dofetilide) discussion here. I am 71, living in Florida, and have been on Tikosyn for 5 months. I was in the hospital for the 3-day observation period twice, once for the mandatory startup, and then a second time a month later because my aFib became so extreme I was having fainting spells. I have experienced some negative side effects with Tikosyn: extreme lethargy, unusual feelings of depression, brain fog/memory loss, and somnolence (extreme sleepiness). I have heard that Tikosyn works well for some people, but it has been a mixed bag for me. In additon, we Americans with our ridiculous paranoia of "socialized medicine" get to pay an extremely high price for this med. I am hoping that after an ablation next month, I can get off of Tikosyn for good.

jsanta profile image
jsanta in reply to dcadwallader

Hey DW Tikosyn Has been a godsend for me so far. I have a very bad case of persistent a flutter. My heart would go to 160 just walking up the stairs. They put the on the three stay in Tikosyn two weeks ago and I feel terrific no side effects yet. I was surprised when I went to the pharmacy and my co-pay was only $10. That was for the generic. My doctor feels that I’ll probably be on tiloksyn for a couple years then get a pacemaker with the AV node ablation. Besides for the no drinking of any alcohol or caffeine my life is great so far fingers crossed it stays and holds. I wish you the same luck.

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