tikosyn

[Guest guest]

Hello everyone, I am new to this support group, although I have been

reading all the postings I have not posted until now. I am on day one

of my tikosyn load in the hospital upp here in Beatiful Manchester

NH. I recently had a setback with a reoccurance of Cardiomyopathy. I

am 36 years young and was diagnosed with DCM 5 years ago. My heart

returned to normal function after 6 months but left me with

reoccuring AF. It was almost completely controlled by amiodarone for

4 years. Until 6 months ago when I visited my new EP and he suggested

that because of my young age I should not be on this medication

because of the long term side effects. I was aware of this and agreed

that I would discontinue amio and try tambacor. did this for 3 months

and atarted to feel horrible(no energy with cronic AF). Thought I had

the flu but played it safe and visited my cardiologist who had an

echo done. Back in cardiomyopathy with cronic AF. He immediatly

dicontinued tambocor and felt that the cronic AF probably caused my

DCM to flare up again.

Rather than place me on amio again long term, he wanted me to try

Tikosyn (Bam..here I am). This site helped me in my research of

Tikosyn (thanks Ellen NC). I am very excited to be on this new drug,

and not dwelling on the side effects.

Does anyone have anything to add regarding this drug as well as any

experiences with the nightmare drug Tambocor. I have plenty of time

to read messages lying in this hospital bed for 48 hours.

patiently waiting in N.H.

Joe

[Guest guest]

hi, joe,

Welcome aboard and good luck. let us know how you are doing.

[Guest guest]

Hi Joe.....and welcome!

I have been on Dofetilide/Tikosyn now since October of 2000. After

a history of permanent Afib, I went into NSR after my second dose of

Dofetilide. I have had two minor Afib episodes in almost eighteen

(18) months. I have had absolutely *no* side effects. Not too sure

what the long term effects will be - I have fingers, toes and just

about everything crossed.

Good luck to you on Tikosyn....hopefully it will be your miracle

drug also, as it is mine. Please keep us posted as to how you are

doing.

Ellen

68 NC

(PS: Think about adding your name, etc. to our Database pertaining

to our Dofetilide Therapy. Click on the word *Database* in the left

hand column of the website screen; then click on " Dofetilide

Therapy* and go from there. This information could benefit so many

other members who may be considering this particular drug.

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(snip) I am on day one of my tikosyn load in the hospital upp here

in Beatiful Manchester NH. (snip) This site helped me in my research

of Tikosyn (thanks Ellen NC). I am very excited to be on this new

drug, and not dwelling on the side effects. Does anyone have

anything to add regarding this drug (snip) Joe

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

[Guest guest]

on Thu, 28 Mar 2002 at 22:04:42, efailteg wrote

:

>I have been on Dofetilide/Tikosyn now since October of 2000. After

>a history of permanent Afib, I went into NSR after my second dose of

>Dofetilide. I have had two minor Afib episodes in almost eighteen

>(18) months.

Ellen,

I could probably find this out by looking back, but could you tell me

just so I'm clear on it - have you had anything else done that is still

" current " , as it were? Like an AV node ablation, pacemaker, whatever?

And are you still on anti-coag / any other meds?

Thanks.

V.

London, UK, 1954 model

http://www.vagalafibportal.fsnet.co.uk/

" Nothing in life is to be feared.

It is only to be understood " - Marie Curie

--------------------------------------------------------------------------------\

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[Guest guest]

Hi Vicky:

I was diagnosed with Afib in April of 2000 - but I know I must have

had it for a few years before and wasn't aware of what that lousy

feeling was - I attributed it to the Flu. I complained on and off

to almost everyone, " why am I always getting the Flu? " ! In April of

2000, I was put on Coumadin, and two other drugs (I'm presently on

my daughter's computer and don't have the names of these drugs with

me here); three months later, I was experiencing three to four

second pauses which registered on a heart monitor, and was taken

into Duke under an Emergency basis and a Pacemaker was implanted;

three months after that in October, they started me on Dofeilide. I

had lots and lots of Emergency Room stays and inpatient stays

between April 2000 and October of 2000, including six (6)

unsuccessful cardioversions, and every Afib med that was out

there.....what a mess!

At the present time, I am taking Dofetilide, Antenol, Nexium,

Coumadin, Fosomax, 1500 calcium and 800 Vit D and a Multi Vitamin -

without iron and without Vitamin K. The Fosomax is for

Osteoporosis. I have been taken it for a year now and my latest

bone density test showed a 6% increase in bone density. I attribute

that increase to the Fosomax and my exercise regime at the gym. My

Orthopaedic doctor is absolutely amazed at these results.

I'm a walking pillbox...but hey, at least I'm walking.....better

than the alternative. I have absolutely no side effects from any of

these drugs..........but somewhere down the road, I'm expecting to

see that I've grown a tail <g>.

Before I decided to go with Dofetilide, my Ep was pushing the

Ablation AV Node; noting that the job was half way done because I

had had the Pacemaker already in place. The thoughts of being med

free (except for the Coumadin) was very appealing, but knowing that

I would be absolutely postively in permanent Afib without any

possibility of parole (not turning back), was not. I opted for

Dofetilide - at least to buy me some time before the Big Cure!

Honestly, I never expected to be in NSR this long...but here I am

and loving it!

Easter wishes to you Vicky, to all our members and to your family

and to all our members' families. I love you all! You're good

people!

Ellen

68 NC

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(snip) could you tell me just so I'm clear on it - have you had

anything else done that is still " current " , as it were? Like an AV

node ablation, pacemaker, whatever? And are you still on anti-coag /

any other meds?

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