Anyone have experience with Dofetilide (Tikosyn)?

Cardiologist / Ablation Surgeon is suggesting Dofetilide ( Tikosyn ) for my loved one?
Do any of you have experience with this antiarrhythmic ?

Yes, I do. I found it effective and relatively free of side effects. I was told in advance that it becomes more effective the longer you take it and I found that to be true.

Its biggest downside is you have to be hospitalized for 3 days in order to start it. That's because it can widen the QT interval in some people, which is the distance between the Q and T waves in your heart rhythm, which is dangerous. If it causes that, they'll reduce the dosage in stages until the QT interval is acceptable. If it doesn't reach an acceptable level, they'll stop giving it to you, discharge you, and you won't be able to take it.

It's also rather expensive, depending on your insurance coverage.

Have you taken it for a long time ?
and do you know if you have to coninue it forever - If you stopped would your bouts return or get worse?

Loved one is already on Eliquis that I suspect caused a life thretening bleeding episode once years ago...I'm leary of drugs but he is a fast oxizier and most of the time we think substances pass though his system quickly.

I took it for about 4 months a couple of years ago but an ablation ended my need for it. Without the ablation, yes, I would have needed it forever.

There's no reason to think that if you need an antiarrhythmic drug to control your afib that you will ever be able to discontinue it (unless you switch to some other drug). Drugs do not cure afib, they only suppress it. So once you start any sort of antiarrhythmic drug you will have to rely on that drug to prevent afib indefinitely unless you undergo an ablation or find some other means of controlling it. Afib does not stop on its own.

Some drugs lose their efficacy after a while too so it’s a wild card for some if one can successfully be on the drug for life. Flecainide kept me in nsr for 15 years until it stopped working. I’m told I’m not an isolated case with long term anti arrhythmia drugs and for some afibbers after a while it isn’t as successful.

Susan,
For 15 years fleck kept you in nsr until it stopped working .
Do you know now after these long years which factors might have contributed to fleck not being effective for you?

I started flecainide on 9-4-2004. 2004 to 2009 straight nsr. Afib triggered by GI issues and vomiting in 2009. 3 weeks in hospital until an endoscopy biopsy result showed gluten sensitivity. 3 serum celiac blood tests negative. As soon as I became gluten and dairy free I remained in nsr until 2014 when a double drug chemo triggered another afib. It self converted within 1.5 hours. I took two 5.5 low sodium v8, a Valium and a 25mg Tenormin and converted. It’s my “cocktail” and I’m unique so this may not work for everyone.
2017 I ate something that must had contained gluten however corn, oats and barley can make me vomit. Vomiting triggered an episode.
2018 stress triggered afib. The hospital my mom was at was spamming me with calls to put her in hospice. I got afib every 1-3 months until it was weekly. It was brutal fighting with the hospital when their only defense for hospice was that my mom was bankrupting CA with her Medicare payments. I’m happy I didn’t cave because she and my grandchildren had wonderful memories.
2019 was the toughest year when my mom was admitted weekly and I wasn’t ready to let her go. When I did agree I was overseas for a ceremony and I got a phone call from hospice the day I was flying back. I was gone 4 days. I answered the call and he yelled “She’s dead!”. That shock produced afib. Then another call two days later when I was still stuck overseas by myself and missed her funeral because I was very symptomatic and couldn’t handy the 15 hour flight home. That call was they thought my mom was buried alive because she had a history of up to 37 hours nocturnal seizures and how do I know she wasn’t buried alive? That call produced a massive afib and afterwards when I did return home I took the wrong advice and had a flecainide overdose. That was the end of my flecainide which aided me for such a long successful time in nsr.

Short answer-vomiting, chemo and stress. Also my obtuse insensitive phone calls that triggered my afib were unique and unfortunate to me and doesn’t relate to anyone’s triggers here on the forum unless they are exposed to pro hospice personnel or ill trained hospice employees that can produce toxic emotional stress.



Edited 1 time(s). Last edit at 03/17/2022 08:36PM by susan.d.

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ben saif
Do you know now after these long years which factors might have contributed to fleck not being effective for you?

There's nothing individual about it. Flecainide is known for this. It can start out being effective and then months or years later simply stop working. It can also become pro-arrhythmic instead of simply stopping working.

For many, flecainide has helped. 15 years is a good run with some blips until it wasn’t effective. I’m hoping to find a substitute that can do as well long term.

Flecainide is fluoride right?

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Percyfaith
Flecainide is fluoride right?

No. Flecainide is genetic for Tambocor.

It always amazes me that 90 % of the heart meds my loved one takes (as well as his hypothyroid med) list irregular heartbeat as a possible side effect. Is that not insane?....of course! Or perhaps they throw that side effect in for legal reasons to protect from lawsuits. Half truths are Full lies.

Like Tikosyn Side Effects: Common, Severe, Long Term - Drugs.com
Search domain drugs.com Dofetilide Side Effects: Common, Severe, Long Term [www.drugs.com]
Check with your doctor immediately if any of the following side effects occur while taking dofetilide: More common Dizziness fainting fast heartbeat Less common Chest pain confusion facial or flaccid paralysis numbness or tingling of the hands, feet, or face paralysis pounding, slow heartbeat slurred speech

I am seeking cause and effect because the only things the medical system has done have not only not been working but appear to be causing him to get worse. In 8 year he has had 2 Ablations, 9 cardio-versions Statin 'Crestor', Eliquis, High blood pressure medication, beta blocker (even though we have been told that genetically he is prone to have a bad reaction to beta blockers), Aspirin (May have salicylate sensitivity -caused bleeding ulcer many years before). He has resolved on his own about a handful of times and the only times he resolved in Hospital emergency rooms was as soon as he was hydrated with common saline solutions. But when asked now saying they say those are too dangerous. Really ? We are frustrated. He is worse now than he ever has been.

Looking into IR (Insulin Resistance), copper levels -balanced with zinc, histamine, Ca/Mg and Omega balance, gut bacteria, lowering toxicity and shoring up any deficiencies and also physics and electrical factors.

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Percyfaith
Flecainide is fluoride right?

As Susan already said, flecainide is a prescription antiarrhythmic. It has nothing to do with fluoride. So that got me wondering why you might have thought that and I googled around a bit. As it turns out, one of the byproducts of metabolizing flecainide is fluoride, so that must be something you came across. But no, that's just how your body gets rid of it. It breaks flecainide down into its basic elements, one of which is fluoride.

Here's an example of what I found when I searched.

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Percyfaith
Flecainide is fluoride right?

Flecainide acetate does contain fluorine. Fluoride is an inorganic, monatomic anion of fluorine (F-). The molecular formula of flecainide acetate is C19H24F6N2O5 Source.

Fluorine is a halogen in the periodic table of elements. You mentioned a hypothyroid med. Why is this important? Commonly, low Iodine can be associated with hypothyroid (testing is done with a loading dose of a specific iodine formulation, then urine is collected for 24 hours and the percentage excreted is computed; sufficiency is excreting 90% or greater of the loading dose). The halogens can compete with iodine in the thyroid. Other halogens include chlorine, bromine and fluorine. Obviously chlorine is used in the water supply. Bromine is used as a fire retardant in cloth, clothing and furniture. It is now ubiquitous. . Dr. David Brownstein, an integrative MD in Michigan and the doc of one of our members, Liz, has a book on Iodine and what its deficiencies. can lead to. Given the complexity of your loved one's situation, addressing iodine is not a DIY project. However finding an integrative doc familiar with iodine might be useful. I've seen literature suggesting both hypo and hyper thyroid issues being associated with afib.

10-15 years ago here, there were some folks who thought that addressing iodine helped their afib situation.

.

Going to study this more.

Flecainide Alert - Afibbers.org
Search domain afibbers.orghttps://www.afibbers.org › forum › read.php?10,141098
When I posted the Hydrate Safely report 1 on fluoride eight years ago, I didn't have a clue about the flecainide/fluoride connection. Even five years ago when Erling offered posts on the detrimental effects of fluoride, I still didn't make the connection. Especially glaring negligence occurred last year when the flurry of extremely-valuable ...

I view afib as a tier 1 problem. Halogen issues are a lower tier issue IMO and there are ways to address it (for example, with iodine intake, also propafenone has a similar action and a different formula C21H27NO3). I've personally used flecainide on-demand for over 17 years.

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GeorgeN
Flecainide is fluoride right?
Flecainide acetate does contain fluorine. Fluoride is an inorganic, monatomic anion of fluorine (F-). The molecular formula of flecainide acetate is C19H24F6N2O5 Source.
Fluorine is a halogen in the periodic table of elements. You mentioned a hypothyroid med. Why is this important? Commonly, low Iodine can be associated with hypothyroid (testing is done with a loading dose of a specific iodine formulation, then urine is collected for 24 hours and the percentage excreted is computed; sufficiency is excreting 90% or greater of the loading dose). The halogens can compete with iodine in the thyroid. Other halogens include chlorine, bromine and fluorine. Obviously chlorine is used in the water supply. Bromine is used as a fire retardant in cloth, clothing and furniture. It is now ubiquitous. . Dr. David Brownstein, an integrative MD in Michigan and the doc of one of our members, Liz, has a book on Iodine and what its deficiencies. can lead to. Given the complexity of your loved one's situation, addressing iodine is not a DIY project. However finding an integrative doc familiar with iodine might be useful. I've seen literature suggesting both hypo and hyper thyroid issues being associated with afib.
10-15 years ago here, there were some folks who thought that addressing iodine helped their afib situation.
.

Yes, Thank you! I studied Flecainide about 5 years ago but did not remember the detail. ...
Pressured right now as 84 yo loved one is on day 12 of a bout. No pain but weak as a kitten if he gets up and moves and elevated heart rate going from his normal 40's to 80's and 90's very high for him, an athlete his whole life..This is the longest he has been in Afib.

I know of Dr. Brownstein and have his book...will get it out and review. Being in a soup of halogens when re-rehabilitating my knee almost daily for 18 months in so advertised 'salt' purified warm therapy pool at a local gym...is what cause my own hypothyroidism.

I have been leery of taking or suggesting iodine as my former, now retired functional integrative practitioner had mixed results -some very bad...I am going to look into finding someone knowledgeable. Not sure if or how Brownstein works remotely. . Detoxing is also something I've had on a back burner for 12 years as I am extremely sensitive and blew past my life time pain quota long ago ie I am a real wuss.

I have worked to lower toxins and emf in our environments.

Are you someone who has been helped by treating Histamine Intolerance.?
I remember reading a report here from someone with HI.

Also do you know of Dr. Jack Kruse? He is someone I follow.

Percy faith:
“ I have been leery of taking or suggesting iodine as my former, now retired functional integrative practitioner had mixed results -some very bad...I am going to look into finding someone knowledgeable. Not sure if or how Brownstein works remotely. . Detoxing is also something I've had on a back burner for 12 years as I am extremely sensitive and blew past my life time pain quota long ago ie I am a real wuss. ”

I posted a new thread in the general forum about iodine. Dr. Brownstein was quoted.

Here is a little snip from the article. The GF thread is on iodine deficiency:
“ Until recently, about 25 percent of the iodine in the diet was from wheat, because iodine was used in the processing of flour. Now, however, a lot of flour in the U.S. is processed with a chemical cousin of iodine, bromide (potassium bromate), which helps makes flour doughier, rise higher, and gives the loaf a better appearance.

But bromide is a double-edged sword: not only has it replaced iodine, but it may also block the activity of iodine. That's also true for two more of iodine's chemical cousins — chlorine and fluoride, both of which are common in drinking water.

There's another problem with bromide. The International Agency for Research on Cancer classified potassium bromate as a Class 2B carcinogen, and it was banned in the U.K. in 1990 and in Canada in 1994. It's still legal in the U.S., although in 1999 The Center for Science in the Public Interest (CSPI) petitioned the FDA to ban it, saying the agency "has known for years that bromate causes cancer in laboratory animals."



Edited 1 time(s). Last edit at 03/18/2022 03:55PM by susan.d.

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Percyfaith
Are you someone who has been helped by treating Histamine Intolerance.?
I remember reading a report here from someone with HI.

I do not, have HI. I've had lifelong food sensitivities and rhinitis. Having addressed this, primarily by restricting offending food, at 66 my rhinitis is the best it has ever been. My doc ( Steven Gundry) says that when he heals peoples gut dysbiosis, their HI goes away, but I have not had that experience. As to HI & Iodine, here is a doc on YouTube talking about it. The link is queued up to 1:50, which is where this topic starts: [www.youtube.com] There is an Iodine group on FB: [www.facebook.com]

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Percyfaith
Also do you know of Dr. Jack Kruse? He is someone I follow.

I'm going to the beach at latitude 33 deg next week & I have skied wearing only shorts at >11,000' elev, but I'm not in Jack's category as he'd want to be naked at the beach near the equator... I've also adapted my eyes such that I don't wear my goggles on the lift going up, or sun glasses ever. My pupils get very tiny now in bright light. My functional eye doc, who suggested ditching the sun glasses years ago said my uncorrected vision improved from 20/200 to 20/60 (I'm certainly not suggesting anyone else do this, I'm very aware this is extremely controversial). Also I have no signs of cataracts at 66 and eye health is excellent (diet and other practices likely are also a factor). Mild mitochondrial uncoupling protects from ionizing radiation induced cell death by attenuating oxidative stress and mitochondrial damage [www.sciencedirect.com]

Jack is a fan of mitochondrial uncoupling. Gundry released a book last week, Unlocking the Keto Code, the point of the book is that ketones signal mitochondrial uncoupling. That is the objective. There are other ways to signal uncoupling including heat & cold stress, increased serum CO2 from breathing techniques, intermittent hypoxia, melatonin & polyphenols. It is like a unified field theory for hormetic stressors.

From the book: "Consider this: What do the following items have in common? Ketones, fermented foods, a 12-plus-hour fast, coffee or tea, MCT oil, vinegar, red wine, turmeric, goat cheese, plunges in ice-cold water, dietary fiber, hot saunas, soybeans, selenium, vitamin D, exposure to red light, vitamin K2. All these items make, or are themselves, signaling molecules that instruct your mitochondria to uncouple. Ketones tell your mitochondria to go into repair mode and keep themselves healthy and functional—as do red wine and infrared light. All these very different influences and substances can activate mitochondrial uncoupling." Gundry, MD, Steven R.. Unlocking the Keto Code (The Plant Paradox) (pp. 50-51). HarperCollins. Kindle Edition.

I will also be doing mild hypothermic exposure at the beach for uncoupling. However the water is relatively warm, at 59 deg F (15 C). Earlier this week, I was shoveling snow wearing only shorts - no shoes & etc. A month ago, I shoveled also shorts, no shoes @ 10 deg F (-12 C). My tap water is currently 46 deg F (8 C) & I shower & soak in that.

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GeorgeN
I don't wear my goggles on the lift going up, or sun glasses ever. My pupils get very tiny now in bright light. My functional eye doc, who suggested ditching the sun glasses years ago said my uncorrected vision improved from 20/200 to 20/60 (I'm certainly not suggesting anyone else do this, I'm very aware this is extremely controversial). Also I have no signs of cataracts at 66 and eye health is excellent (diet and other practices likely are also a factor).

I wouldn't worry about cataracts so much as I would macular degeneration. They can fix cataracts, but not MD and it leads to total blindness.

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Carey
I wouldn't worry about cataracts so much as I would macular degeneration. They can fix cataracts, but not MD and it leads to total blindness.

Understand why you'd say this. Some data I've looked at suggest even visible light into the red spectrum and infrared as well can be an agent.

It is interesting that the first ophthalmoscope was designed around 1851, drusen was described in the mid-1850's, it was in 1874 that the first description of MD cases appeared in the literature. After that, reports were few until the 1930's. An ophthalmologist who studied this history noted that as descriptive of the eye and its issues as they were, it would have been very unlikely that the ophthalmologists of that era were just not seeing MD. Hence there is a hypothesis that perhaps lifestyle could be responsible.

As I noted, I would not encourage others to do what I do.

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GeorgeN
It is interesting that the first ophthalmoscope was designed around 1851, drusen was described in the mid-1850's, it was in 1874 that the first description of MD cases appeared in the literature. After that, reports were few until the 1930's. An ophthalmologist who studied this history noted that as descriptive of the eye and its issues as they were, it would have been very unlikely that the ophthalmologists of that era were just not seeing MD. Hence there is a hypothesis that perhaps lifestyle could be responsible.

That's very interesting and indeed lifestyle could be responsible.

For example, consider how lifestyle with regard to sun exposure has changed in the last 150 years. At the turn of the 20th century pretty much every woman out in public was wearing a large hat. Ditto with men, though their hats were smaller. Up until about WWII virtually everyone wore hats when outside, and a hat is a pretty good protection from UV light.

For anyone interested in the alternative AMD hypothesis, here is a link: [www.cureamd.org]

I recall seeing this post ... well.. 7 weeks ago. I wanted to comment that another thing to think about on Tykosin is drug interactions. I have been on it for over 3 years now. There are some other drugs I can not take that would be useful for me. Just some include.. SSRIs, Zithromiacin (sp?). And then I wonder about supplements. My cardiac pharmacist has a fabulous supplement interaction database and I just talked to her about Elequis vs. some supplements that may or may not be blood thinning. But when it comes to Tykosin you really should be quite careful. I do the basics. And a few others .. anyway something to keep in mind. I know this is buried but hopefully the OP will see if it it is useful to them. But its is a very excellent drug. I left the hosptial on 500 mcg and then had to move to 250 and finally to 125... (because of QT issue). Plus quarterly blood tests for what have you..

just my experience..

Great forum. I am 71 and have had persistent AFIB for almost a year and was miserable at times. In early April of this year on a Tuesday I was admitted to the hospital for 3 days and administered 5 doses (500 mcg) of Tikosyn every 12 hours while being monitored for side effects - mainly proarrythmia. I converted back to sinus rhythm after 2nd dose. After discharge on the following Friday I had a brief setback on Sunday afternoon which lasted for about 18 hours and then again 2 weeks ago for about 6 hours. I am still taking Tikosyn every 12 hours for the foreseeable future and scheduled for an ablation in late July. My EP says the ablation should increase the long term efficacy of the treatment and will probably keep me on Tikosyn for 4-6 months after the ablation. I was a cyclist for a long time - very fit with a low resting heart rate and have read studies that endurance athletes have a higher than average incidence of AFIB which seems counterintuitive. I feel much better now with my old energy back. Anyone with similar situation - comments appreciated. Thanks.