Re: Tikosyn LONG/anecdotal

[Guest guest]

Michele in NYC and Barb in PA: here's my experience with Tikosyn (aka

dofetilide). This is the first anti-arrhythmic I have tried. My EP told me

that I

would be admitted to the hospital to start it, and advised me to bring my

laptop so I could work, or books to read to keep myself occupied because

basically

I would just be sitting around for a few days taking pills.

It turned out to be not quite such a casual affair, however, due to my

propensity towards anxiety. When I came to the hospital to be admitted, the lab

did

not have an order for my blood work in their computer system. The only other

people in the waiting room were a totally dysfunctional father/son duo, the

father completely resenting his son's " taking control " of his medical care, and

the son attempting to convince the father that he " needs a health advocate "

because " at this and all other hospitals they kill around 10% of their

patients, due to negligence and/or error " . I overheard about as much of that as

I

could take, when the order arrived for my lab work. The technician asked if I

was there for chemotherapy, and I became even more paranoid that he did not have

the proper paperwork. OK. Off to admitting I went. I got to my hospital

room, and put on the tattered gown with no remaining hooks or ties to keep it

closed (I suggest you take your own), and an IV was started. After a while, the

EP on call (whom I had never met before) visited, and informed me that I

would start with 250mcg of the Tikosyn that evening around 9pm. The pharmacy

people (relatives of The Vagal People -- ha ha just razzin' ya Trudy) arrived

with

a VCR and a video about Tikosyn which was informative, though terrifying.

Dr. Schneider narrates this Pfizer presentation, elucidating the

possiblity of experiencing a " bad rhythm " when starting the Tikosyn which " could

even

cause death. " This theme is repeated again and again throughout the video,

until one is filled with The Fear of God. When 9pm rolled around and the nurse

brought in the tiny cup with the tiny pill, I noticed that it said 500mcg. I

did not take it, but rather asked to speak with a doctor, since the EP on call

had said they would start me on a dose of 250mcg. I never did speak with a

doctor, but The Pharmacy People returned and explained to me how the dose is

calculated using a logarithm that factors in your height, weight, kidney

function, etc. I was convinced, and took the pill. Visions of Grace Slick and

white

rabbits raced through my head. What the heck. I did not allow myself to fall

asleep the entire night, remaining hypervigilant about my heart sensations

(occasional PVCs) and watching the monitor, which I was unable, of course, to

interpret. The next morning I could hear the doctors outside my door murmuring

things like " borderline " " watch her very closely " " maybe we need to decrease

the dosage " etc etc, just enough to make me even more anxious. Maybe they

weren't even talking about me! OK, this is getting long enough, and if you have

made it this far, I congratulate you.

You have to stay in the hospital in case you should have the " bad rhythm "

which I think is ventricular tach/fib and/or Torsades de Pointes (sp?), very

rare. The IV is in place in case they have to get you out of the " bad rhythm. "

An EKG is taken 2 hours after each dose of the Tikosyn, which for me was 500mcg

every 12 hours. It's a small, ordinary capsule. Blood tests are taken

regularly to make sure that you are outputting as much as you are inputting.

Other

than anxiety, I never felt anything. And I still, to this day, feel no side

effects whatsoever from the Tikosyn. What I did notice was that I feel much

better, I think because of stopping the Cardizem and backing off the Toprol,

all of which I had been taking for years. I left the hospital feeling great.

For the first time in years, I could see definition in my feet, and in general

I completely lost the " puffiness " that I have had for so long, I think

retaining fluids from the Cardizem.

I have had four breakthrough episodes. The first was nine hours in duration

with a fast, pounding rate; the second was five hours in duration and somewhat

milder; the third about the same; and the fourth one was only 2 hours in

duration and I had to check my pulse to know whether I was in or out of afib.

After the first 3 weeks, I ceased to feel PACs and PVCs. I sleep better at

night

and have more energy during the day. I am starting to relax with the new

drug and I think it is figuring out how to keep me out of afib, or if not, at

least to drastically reduce the severity of my episodes. It wasn't so bad being

the hospital. I finished six books that I had started over the last year, and

learned some new relaxation techniques by watching the hospital's Relaxation

Channel.

Please let me know if I have answered your questions or if there is anything

further you would like to know. Thank you for asking about my experience with

Tikosyn. Sandy Raichel

It is so funny that I read your message about

> Tikosyn!! My EP told me about that yesterday. Please

> give me some info on it. Why do you have to stay in

> the hospsital? Is it given in an IV? How often do you

> have take it? How did it make you feel?

[Guest guest]

Kat, I have never taken Flecanide, but was told swelling and retention can be

a side effect of Cardizem. Sandy

> Was is just the Toprol and cartezem (sp???) that

> created the swelling and retention and do you know if

> Flecanide does the same thing. Seems like I have alot

> of fluid retention.

>

> Kat in OH

>

[Guest guest]

Oh....I hated that Tikosyn video. I agree, it was terrifying! I told anyone

that would listen to me there that if they had to show that tape, that at least

give the patient the opportunity to view it with a family member - certainly

*not alone*. I was alone - and immediately thereafter, a super duper panic

attack took over! If anyone in any hospital has the routine of the Tikosyn tape

being shown to Tikosyn patients, please, please - suggest that a family member

be with them. That was a very scary part of my Tikosyn hospital stay. To all

our members planning on going into the hospital for Tikosyn, demand that a

family member be there with you when you are ready to watch it. Is it necessary

anyway to show it?

And why do they have to stand right outside your door and discuss your entire

case with everyone. Even with the door closed, you can hear every

word........this is also scary.

Oh I apologize for being so critical - and I certainly shouldn't complain.

Tikosyn and that three day hospital stay (despite that awful Tikosyn tape and

the loud doctors' voices), gave me my life back - and I will forever be

grateful. But please please - give the next Tikosyn patient a break - and

eliminate the tape and speak softly!

Ellen

(NSR on Tikosyn/Dofetilide

******************************

----- Original Message -----

From: RaichelRidge@...

(snip)

The pharmacy people (relatives of The Vagal People -- ha ha just razzin' ya

Trudy) arrived with a VCR and a video about Tikosyn which was informative,

though terrifying. Dr. Schneider narrates this Pfizer presentation,

elucidating the possiblity of experiencing a " bad rhythm " when starting the

Tikosyn which " could even cause death. " This theme is repeated again and again

throughout the video, until one is filled with The Fear of God. (snip) The next

morning I could hear the doctors outside my door murmuring things like

" borderline " " watch her very closely " " maybe we need to decrease the dosage " etc

etc, just enough to make me even more anxious. Maybe they weren't even talking

about me! (snip)

*****************

[Guest guest]

>

> Since then, I have found a great Cardio guy in Cincinnati, or so it

seemed, compared to the witch hunt at Walter .......This new guy

put me on Rythmol 225mg x 1 per day, Toporal 12.5mg x 1 per day and

folox/folbee (some vitiam b supplement) and an aspirin.

>

> I feel horrible. Every day seems like a " mile-stone " to get back to

normal life, I feel like crap. I do chew a bit of Copenhagen and have

some beers through-out the week (which probably doesn't help)

>

> Can anyone out here shed some light on a similar

situation..........or have any recommendations.........I'm not myself.

Most of the side-effects are horrible to say the least......I feel

like I, and the worst is being exhausted......I've lost interest in

everything I used to enjoy. It feels like I'm on LSD or Mushrooms,

dizzy, euphoric, nausea...etc.........I'm normally a fit guy who

enjoys life. What the hell happened to me? Is it the combination of

all the drugs?????

>

> In-the fight,

>

> Bernie

>

You will find a lot of good general info about afib at www.affacts.org

Lisinopril is an ace inhibitor, and does nothing for afib. A 24 hour

holter monitor may well not have found afib if it wasn't frequent

enough then. A 30 day monitor would have been better.

Did the new doc say how often you have afib episodes, or do you know

yourself? Many people don't realize they can tell by taking their

pulse. If the episodes are not very frequent, and the way you feel is

due to the rhythmol, you may want to talk to the doc about if you

actually need it or could get away with the beta blocker or a pill in

the pocket routine where you only take a med when an afib episode

starts, not all the time.

If you need to take an antiarrhythmic like rhythmol, there are others

that may not have the side effects you are experiencing - flecainide,

dofetilide, etc. Or an ablation, but don't let a military doctor near

you for that, no offense.

If you are taking an antiarrhythmic, what does this do to your ability

to stay in the army? If a dose is missed or if you stop short taking

the med abruptly for some reason, you could be in difficulty.

[Guest guest]

> I feel horrible. Every day seems like a " mile-stone " to get back to

normal life, I feel like crap. I do chew a bit of Copenhagen and have

some beers through-out the week (which probably doesn't help)

Right - tobacco and alcohol can both be afib triggers, as is caffeine.

[Guest guest]

Nope....the last time I look, there was only one head on my shoulders - and

sometimes I have my doubts about that one.

My fourth (4th) Dofetilide Anniversary is coming up soon - WOW! Imagine

that!

Ellen

(NSR on Dofetilide)

***************

----- Original Message -----

(snip) So far the only drug that I have not heard that has any

perceivable side effects is doefetilide. I do not think Ellen has

> grown two heads as yet. (snip)

****************

[Guest guest]

I remember, vaguely, the video, and thinking to myself -- are these people

out of their )* & **%te@@!!ing minds. Warning abut " in some cases death " is

the ultimate cop out. I ask myself, if death is a possibility, then why

haven't the drug companies worked that " little " problem out in their R & D?

Could it be they checked with the accountants and their lawyers and reached

the conclusion that with enough caveats. they could send that little

profitable drug out and add to the already stuffed coffers of the

pharmaceutical. Maybe they should start taking some of their own " medicine "

instead of having the largest percentage of " professionals " addicted to the

medicines Federal Drug Enforcement agents bust the rest of the population

for. And as for the " discussions " the doctors held -- those bastards didn't

even have the courtesy to discussion it outside my room, but rather,

gathered at the foot of my bed, and " shouted " their thoughts -- so I -- and

my roommate could hear. After all these docs didn't want to get too close

to the patient. I had the last laugh. They told me I had " flunked " the

preconditions for taking Tikosyn and I had the pleasure of reporting all of

them to the hospital's HIPAA compliance officer and demand a written

response as to the steps they had taken to insure patient privacy, my

privacy that had been violated. (I was aware of the HIPAA regulations

having written about how hospitals and personnel, especially physicians,

were ignorant of them.) One final note. During both stays at Cleveland, I

never once had occasion to witness a HIPAA privacy violation. Ellen is

wrong only in one single aspect. She SHOULD complain, she SHOULD be

critical, even if the damn drug worked for her. HIPAA punishment regs --

instead of opting for financial and even, in some cases, prison

punishments, should also include an options for month-long high colonics.

Lew

At 04:39 PM 9/25/2004 -0400, you wrote:

>Oh....I hated that Tikosyn video. I agree, it was terrifying! I told

>anyone that would listen to me there that if they had to show that tape,

>that at least give the patient the opportunity to view it with a family

>member - certainly *not alone*. I was alone - and immediately thereafter,

>a super duper panic attack took over! If anyone in any hospital has the

>routine of the Tikosyn tape being shown to Tikosyn patients, please,

>please - suggest that a family member be with them. That was a very scary

>part of my Tikosyn hospital stay. To all our members planning on going

>into the hospital for Tikosyn, demand that a family member be there with

>you when you are ready to watch it. Is it necessary anyway to show it?

>

>And why do they have to stand right outside your door and discuss your

>entire case with everyone. Even with the door closed, you can hear every

>word........this is also scary.

>

>Oh I apologize for being so critical - and I certainly shouldn't

>complain. Tikosyn and that three day hospital stay (despite that awful

>Tikosyn tape and the loud doctors' voices), gave me my life back - and I

>will forever be grateful. But please please - give the next Tikosyn

>patient a break - and eliminate the tape and speak softly!

>

>Ellen

>(NSR on Tikosyn/Dofetilide

>******************************

> ----- Original Message -----

> From: RaichelRidge@...

> (snip)

> The pharmacy people (relatives of The Vagal People -- ha ha just

> razzin' ya Trudy) arrived with a VCR and a video about Tikosyn which was

> informative, though terrifying. Dr. Schneider narrates this Pfizer

> presentation, elucidating the possiblity of experiencing a " bad rhythm "

> when starting the Tikosyn which " could even cause death. " This theme is

> repeated again and again throughout the video, until one is filled with

> The Fear of God. (snip) The next morning I could hear the doctors

> outside my door murmuring things like " borderline " " watch her very

> closely " " maybe we need to decrease the dosage " etc etc, just enough to

> make me even more anxious. Maybe they weren't even talking about me! (snip)

> *****************

>

>

>

[Guest guest]

>

> And why do they [the doctors] have to stand right outside your door

and discuss your entire case with everyone. Even with the door

closed, you can hear every word........this is also scary.

>

> You have every right to complain about those inconsiderate doctors!

Lee