Tikosyn Help And Experiences (Top voted first)

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What's your experience with tikosyn?

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I am scheduling a hospitalization for this medication (Tikosyn). Would love to hear from anyone who has used this; what has been your experience?

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I studied Tikosyn and thought it would be the best choice for me, because it does not have the side effect of slowing the heart down or lowering blood pressure like so many anti-ahrrythmic meds. It does require a hospital stay to start and a specially trained and registered cardiologist/EP to administer. So I started at 250mg/day with no problem. 10 days later I went back into my left atrial tachycardia (also called atypical A-Flutter). So I went back and upped it to 500mg/day. A cardioversion at the end of day 3 failed to convert me to normal sinus rhythm after 3 shots. My EP and I agreed Tikosyn will not work for me.

My history: Healthy male age 67, normal weight and blood pressure, good cholesterol numbers, regular exerciser, with no cardiovascular disease, but with a family history of A-Fib in the males. I had two ablations 9 years ago after many years of worstening A-Fib and they helped but did not cure me. 5 years ago I had mini-maze surgery and left atrial ligation. That cured me for 4 years with no meds. but now i have this left atrial tachycardia that is very difficult to control.

If it were just A-Fib, I would recommend you try it if your EP agrees. It is a tough drug tho, as it can kill some people with long QT syndrome - your cardiologist/EP knows how to check your EKG for that - and it needs to be started or restarted in a hospital setting - and there are interactions with many different meds and also with some foods. And you had better not take make the mistake of accidentally taking two doses in the same day - use an app like MedMinder on your phone, and do not clear it until you take it - to be sure. It can be dangerous for some people. So you have to be smart and careful if you do try it. And your cardiologist/EP has to be specially trained and registered to adminsister Tikosyn, as does your pharmacist, and they are harder to find than run of the mill cardiologists. So it may not be simple to try, depending on availability of Tikosyn registered physicians and pharmacists and your insurance. Also if you miss 3 days, like you are out of town and forgot or lost your prescription, you have to go back to the hospital setting to restart it again.

But would I try it before all my procedures left so much scar tissue? I would try it if flecainide would not control it (it dod not control my A-Fib). I would consider Multaq, but you need to read and understand the Pallas study (the FDA called off this study because of an increased death rate).

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7

TIKOSYN is the number one medication of choice for Atrial Fibrillation or Flutter apparently. I did not know that its effectiveness increases the longer it is taken but I would believe that. I have been on Tikosyn 500ucg twice daily since December 2011 and while it did not convert me on its own, a one-shot, well done Electrocardioversion at the end of day 3 (of Tikosyn induction in hospital) converted me and I was discharged from hospital 2 hours later incredibly. I have been in NSR since. I wore a 24/7 monitor for a month in December 2012 and it showed ZERO afib but the odd session of skipped beats, generally when I abused my body with salt, low potassium, caffeine, etc. I drink a beer cup (16 oz) of Low sodium V8 daily or twice daily to ensure my Potassium level is maintained above 4.5, and I supplement with Magnesium daily. I stay away from triggers and especially salt of any kind. My Left Atrium was enlarged to 60mm when I began and some months ago it was down to 55mm. I am due to revisit my cardio shortly and they will measure my LA size again. Hopefully it is down to under 50mm. I AM, take note, experiencing what may be side effects of Tikosyn, namely morning mild nausea and 'balloon head'; both go away after a couple of hours however. They are a pain in the butt, but gladly tolerated to stay on Tikosyn. It is not for everyone, but for those that it works for.... it works very well. If your cardio/EP recommends it, I would try it. And if it works for you, I would stick with it.

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1

I don't have any personal experience with this medication, but thought it would be helpful to others who are interested in it to post some more details about Tikosyn.

Tikosyn (Dofetilide) is used to treat irregular heartbeats. It improves your heart rhythm by relaxing an overactive heart.

Information regarding other uses, side effects, interactions, etc, can be viewed in the two links below:
https:/­/­rxchat.com/­wiki/­Dofetilide/­

http:/­/­www.ncbi.nlm.nih.gov/­pubmedhealth/­PMH0000167/­

I hope this helps!

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4

Thanks for that generous amount of info. I've been on it now for about four weeks. Had two Afib episodes a week apart during weeks 1 and 2, but weeks 3 and 4? So far so good. Of course, I've made other changes (no more wine, low carbs/gluten, etc.) so I don't know. See my EP next week. Sometimes I wonder if we -- and the medical profession industry -- aren't just too fixated on medicating and operating instead of other approaches, such as doing a thorough analysis of one's body chemistries and tweaking our nutritional and environmental factors accordingly. We're each have uniquely different body chemistry "signatures," yet we're all expected to recover from taking the same pill?

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5

I don't think diet and exercise can cure when the nerves in the heart are miswired. I tried that and eventually lost. One encouraging thing to know is that Tikosyn becomes more effective the loinger you take it. After 6-12 months, it becomes statistically much more effective than it is initially. So I think you are on starting out OK. From what I have read, studies show that it works better the longer you take it. You need to be religious about dosing though. Do not skip or double a dose. I installed the Med Minder app on my phone to be more precise, and do not clear it until I take the pill. Good luck!

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6

Dear Still Beating: Thanks you so much for that response. I was not aware of the studies about the long-haul benefits. That is encouraging. I did ironically have some serious flutter the other night, and then I realized I had missed my dosage. It was only an hour later, so I took my Tikosyn and went to bed. I think I dodged a bullet. I do have the app, but what happened is that my cell phone was re-programmed the day before, and the app was erased. Took care of that today and nowI'm back on schedule!

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8

I'm finally back and still beating, but this time more Normally and usefully. After my miswired genetics, two catheter ablations and one mini maze surgery when the technology was still new, i developed atrial flutter that wasrefractory and my only option was to try to slow it down. That was though becauseicouldn't stand the meds anymore. Tikosyn is good stuff for many people with rhythm problems but it was too late for me. Finally I had Cox Maze IV at the Ohio State Medical Center by Dr John Sirak. Because of my previous surgery it was more difficult than what he usually runs into. The maze would be done thorascopically for most, but my required open heart surgery. It has responded well. Like many, he relies on dofetilide (Tikosyn) to maintain normal sinus rhythm for the first month or two because it it's the best anti-arrythmic drug available, and it works. If i we're just staring out with a-fib, Tikosyn would be my first choice, because it is effective and has virtually no side effects. I would not trust Multaq after the FDA had to stop the Pallas study

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9

I'm 68 male, had AFIB 3 weeks before starting the med. On it about 2 weeks now, have had no negative side effects so far.
It does make me feel 20 years younger energy and mentaly. I do have frequent dreams , none violent.

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10

Hi, I was in hosp 3 days starting it. No apperant side effects yet. Very hard to find in my small city. I get it from a hospital pharmacy, but yet this time only got 10 pills, the med is on order. I find this strange for a hosp phrmacy. Keep me posted on your results. I was in AFIB over 3 weeks prior to the med.

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11

I was diagnosed with Afib at 46 years old and started tikosyn after two cardioversions lasted only a few days to a week each. I've been on tikosyn for a year and a half with no side effects. During my 3 day stay in the hospital they started me on 500 mcg and had to reduce it to 250 and finally settled on 125 mcg as the higher dosage made my QT too long.

I still have had Afib break through several times for period as short as hours and as long as a week to ten days but it continued to be get longer between episodes and always returned to a normal rhythm on my own.

Two months ago I opted for a cryo PVI Ablation which seems to have worked the first time. In one more month they will drop my tikosyn and pradaxa! It will be nice to be off those expensive drugs but as I said before I had no side effects. I would recommend it as I would the the cryo ablation.

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12

Been on tikosyn since 2012. Got defib/pacemaker same year. Only had mild "tikosyn headache" sometimes. No other side effects.

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13

Anyone taking Tikosyn and Eliquis and experiencing severe abdominal pain??

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14

I called in at 9:30 am on Friday for a refill of Dofetilide. The nurse never called my perscription in at my pharmacy.. I was on one pill in the morning and one at night 500 mcg. So I saved the night pill for Saturday and have none for today. I will get the perscription Monday and start my regular dosage. Is this alright to do?

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15

Deborah (# 2) - Hi I was hospitalized December 18, 2017 until December 20, 2018 for the introduction to the Tikosyn medication I did not have any bad side effects. It has been 3-months I think this medication may be causing stiffness to my body....

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16

I take my Tikosyn at 5:30am and 5:30pm. I know it’s important not to miss a dose and adhere to a schedule. Do I alter the times at all when the clocks fall back during daylight savings?

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