Re: Re: dofetilide start

[Guest guest]

on Tue, 4 Dec 2001 at 20:56:18, trudyjh@... wrote :

>in Database,

>Dofetilide therapy is very interesting info about dosages and

>results. What dose are you on? Maybe if thinsg don't improve more,

>you need a highre dose...

Trudy,

I'm on 500 mcg (note micrograms not milligrams as I first thought it was

- *my-newt* doses!) twice a day, which is the standard (and maximum)

dose. Only in the original trials did they go above 500 mcg bd. I also

asked if a higher dose was an option and the reply was that it was not,

since it doesn't work in that manner. (though memory tells me someone

somewhere was increased from 500 to 700 bd with success?) The lower

doses are only used if the QTc interval extends too much, and certainly

a lower dose is associated with a lowering of efficaciousness.

I will of course keep you all updated.

Having said that, if anyone is not getting complete control with their

present meds, then according to the newer thinking about AF, (i.e. that

a more proactive treatment regime should be adopted to stop the AF

asap), then surely you should be trying Dofetilide asap, too?

Best of health to all,

Vicky

" There is a moment in the life of any problem when it is large

enough to see, but small enough to solve " - anon

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[Guest guest]

Vick,

Yes I was on Doeftilide 750mcr 2x per day. I had little to no side effects.

I did however have ECG taken every two weeks.

Just one note for the first month I found that I did go into AF , the

longest time for four days at a stretch. The it evened it self out. I put

this down to atrial remodeling but who knows.

C

> Hi Vicky:

>

> I'm on 750 (325 2x daily). They started me on 1000 (500 2x daily)

> in the hospital, but then for some unknown reason the dosage was

> switched to 750. Fortunately for me, I converted after the second

> dose on the 1st day in the hospital. I have had one episode of Afib

> in over a year. You might check in with Codling...if my memory

> serves me correctly he was on a higher dose.

>

> I think more Afibbers would be on Dofetilide if it were available to

> them.......this is just not the case.............what a shame!

>

> Also, as Trudy suggests, I would encourage you to review *Dofetilide

> Therapy* in the Database section of our website. I think we have

> about ten (10) members who are or who have been on Dofetilide. This

> should point you in the right direction. Also, please consider

> adding your name to that database...please!

>

> Ellen

> 68 NC

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

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[Guest guest]

on Wed, 5 Dec 2001 at 02:15:33, jpowell@... wrote :

>The dofetilide is doing a good job of keeping me in NSR for about a

>week, then I go out for a day or so then back into NSR.

This is encouraging for me, as are the other messages - thanks all.

When I went back to AF after 3 days I was extremely disappointed, though

not surprised after 6 years of this affliction. But then I was

surprised when I re-converted!

Are you getting ectopics when you are in " NSR " ? I'm getting about 2 or

3 normal beats and one ectopic, which varies from that down to

verging-on-AF up to a whole minute without an ectopic.

>I'm still sensitive to vagal triggers somewhat, but much less than

>before; I'd pretty much degenerated into permanent afib at that time.

Sounds like me.

>The doctor who started me on it told me that it wouldn't keep me out

>of afib all the time but would probably be quite and inprovement.

>And it certainly has.

Again, this sounds encouraging.

>No side effects

I *think* I'm getting a dry mouth at night, otherwise nothing.

>other than the mental paranoia

>about accidently double-dosing, which would not be good to say the

>least.

You don't say! At present, I'm having a hard time trying to stick to

exact 12 hour intervals

Thanks for the info, Jim.

Best of health to all,

Vicky

" Recapture Hearing Your True Heart Melody " - R.

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[Guest guest]

Vicky:

My EP also emphasized that Dofetilide might not keep me in NSR - his exact

words were, " Dofetilide is not a magic bullet*. I often wonder when my

bubble will burst! Its been 14 months and still in NSR. One of our members

(Dolores) is neck and neck with me. Codling and I have often been

curios as to just how many patients who are on Dofetilide have had this kind

of success. We cannot forget that most of our members here are Afibbers who

are having problems - there are so many Afibbers, who, with proper

medication, and even some without any medication at all, experience no

problems whatsoever and have no need for a Support Group such as ours. I

know of four myself - how many do you know? Our 320 membership is a drop in

the bucket in the big scheme of Afib!

Jim & Vicky:

Get yourselves the little clear plastic thingamajigs with the days of the

week on them. You can get this at any drug store - at least in the US..

Then set two alarm clocks - one for the AM and one for the PM. I bought

four weeks and once a month I sit and count out my pills for each little

plastic box - and I'm set for the month. They are also extremely convenient

for traveling or just going out for the day. If its Sunday, I grab the

little box that has " Sunday " written on it. If its " Monday " , I grab the

little box which has " Monday " written on it. Believe me this routine,

combined with my two clocks, has *saved my life*!

Ellen

68 NC

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

Jim wrote:

> >The doctor who started me on it told me that it wouldn't keep me out

> >of afib all the time but would probably be quite and inprovement.

> >And it certainly has.

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

Vicky wrote:

> >other than the mental paranoia

> >about accidently double-dosing, which would not be good to say the

> >least.

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

Jim wrote:>

> You don't say! At present, I'm having a hard time trying to stick to

> exact 12 hour intervals

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

[Guest guest]

,

Dofetilide is not indicated for P/AFIB . The medical people over here looked

at this, if Aib is breaking through then the drug should be discontinued. I

was lucky my EP let me stay on the drug and the AF breakthroughs were a lot

better than permanent AF thats my preference.

The only point I would make and this is from my experience only, the afib

episodes really felt bumpy and YOU KNOW YOU WERE IN AF.

Unlike amiodarone, you had to think a little to know you with having a blip.

Out of the two give me Dofetilide any time.

C

> Vicki,

>

> I too am having a similar experience with my newly started dofetilide (375

>

> bid). I kept a graph of the time and duration of the episodes which showed

>

> some improvement on days 16 & 17. Saw Dr. yesterday and he suggested I

> watch it for 5 more days, if still breaking through with afib then he'd

> figure we were currently at a subtheraputic dose and would raise it to 500

>

> bid (no hospitalization but another EKG). It sounded reasonable to me.

> Best

> of luck.

>

>

>

>

>

>

[Guest guest]

on Wed, 5 Dec 2001 at 08:09:22, Ellen Gilmartin

wrote :

<loads of helpful stuff snipped> - thanks

Re. the pill boxes, I almost bought one of these a while back to help

with all the vits and mins I took when I was really low (didn't 'cos

they weren't big enough!), but I had thought of going back and getting

one to help with the dofetilide and aspirin - now you've kicked me into

actually doing it, Ellen - thanks

Best of health to all,

Vicky

London, UK, 1954 model

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

" You can convert some of the people some of the time, but you can't convert all

of the people all of the time " - me.

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[Guest guest]

Vicky I can only go on what I was informed by St 's, I

can see from your notes below that Tiklosan is not recommended for patients

with P/AF.

That's the bit I was refereeing to. You have hit the nail on

the head. As I have mentioned in other mails Dofetilide does not mask

Ectopic beats. Unlike Amiodarone.

Also there is some worries that when In AF Dofetilide is not much use in the

control of the episode.

Two points I notice you are in the UK what hospital are you going to

prescribe this medication. This would be useful to the others on the board.

If you can feel these ectopis you may be a very good candidate for an

ablation.

C

>Dofetilide is not indicated for P/AFIB . The medical people

over here looked

>at this, if Aib is breaking through then the drug should be

discontinued.

, I have to say I am not sure about this. The Tikosyn

blurb

(product monograph from www.tikosyn.com) certainly says it

is not

indicated for paroxysmal AF - but I read that as AF that is

paroxysmal

BEFORE going onto dofetilide.

It says :

- " TIKOSYN is indicated for the maintenance of NSR (delay

in time to

recurrence of atrial fibrillation/atrial flutter [AF/AFL])

in patients

with AF/AFL of greater than 1 week duration who have been

converted to

NSR "

- " In general, antiarrhythmic therapy for AF/AFL aims to

prolong the

time in NSR. "

- " for the conversion of AF and AFL to NSR "

- " TIKOSYN has not been shown to be effective in patients

with

paroxysmal AF "

I don't read any of this as suggesting that dofetilide

should be

discontinued if the AF is breaking through. So far although

my AF has

been breaking through (though presumably it's just early

days), I have

had no indication that I should stop it, rather the opposite

- I shall

see more on the follow ups in the next few weeks.

>I

>was lucky my EP let me stay on the drug and the AF

breakthroughs were a lot

>better than permanent AF thats my preference.

I await my follow up with interest, in this case !!

For my situation, I am hanging on just in NSR with loads of

ectopics,

but today actually feeling quite good - did some

leaves-raking and felt

the extra heart rate come up and subside just like it should

:-))

Best of health to all,

Vicky

"

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[Guest guest]

Its QTC interval , thats the term I was trying to think of.

C

> I scanned thru some of the faq at the www.tikosyn.com site and it is

> the QT interval on the ekg, if I remember correctly. I have a couple

> of old ekg printouts my doc gave me from when I was first diagnosed

> with afib. The one showing afib has a QT interval of 304 and the one

> several days later which the machine labelled " sinus rhythm with

> short PR interval, atypical ekg " has a QT interval of 436. I learn

> something every day.

>

> (Folks who don't know what Q etc are can refer to the link somewhere

> on our web site that explains EKGs. Basically the bumps are labelled

> with letters, and I have forgotten and am too lazy right now to look

> up which means which.)

>

> Speaking of learning new stuff, I was astonished when my cardio

> mentioned veins don't get blocked - just arteries. I had never

> realized that, and I wonder why. Semes to me there should be some

> way to build on that to prevent plaque collecting...

>

>

>

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[Guest guest]

>Its QTC interval , thats the term I was trying to think of.

I think this is normally written QTc, the c stands for complex.

As far as I know (!) the QTc and QT interval are the same thing.

It's measured from the beginning of the QRS complex to the end of the T wave.

It's essentially the time from ventricular activation to ventricular

repolarisation.

Probably!

--

D

[Guest guest]

Dear Ellen,

As so frequently occurs, when I try to gain access to the website, I enter

my password and identity and

am told it is invalid. This has happened at least four times. What am I

doing wrong? Then when I

attempt to enter the correct information am told I'm being transferred to an

insecure site blah blah blah.

I am so frustrated by this. It would appear all I can do is receive

e-mails.

Please help me.

Re: dofetilide start

> I just thought I would remind everyone that there is lots and lots

> of information about Dofetilide/Tikosyn in our Bookmarks section:

>

> Just click below; then click on the word " Medication " ; then click on

> the word " Tikosyn " :

>

> http://groups.yahoo.com/group/AFIBsupport/database

>

> Ellen

> 68 NC

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

> In AFIBsupport@y..., " trudyjhnew " <trudyjh@a...> wrote:

> > > - " TIKOSYN has not been shown to be effective in patients with

> > > paroxysmal AF " How weird. Note the med speak " has not been

> shown to be effective " - that's not the same has " has been shown to

> not be effective " . Maybe all it means is they haven't tested it for

> paroxysmal afib.How does tikisyn work anyway?

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

>

>

>

> Web Page http://groups.yahoo.com/group/AFIBsupport

> For more information: http://www.dialsolutions.com/af

> Post message: AFIBsupport

> Subscribe: AFIBsupport-subscribe

> Unsubscribe: AFIBsupport-unsubscribe

> List owner: AFIBsupport-owner

>

>

>

>

[Guest guest]

Dear Ellen,

Did my e-mail reach you regarding my frustration with the site?

Re: dofetilide start

> I just thought I would remind everyone that there is lots and lots

> of information about Dofetilide/Tikosyn in our Bookmarks section:

>

> Just click below; then click on the word " Medication " ; then click on

> the word " Tikosyn " :

>

> http://groups.yahoo.com/group/AFIBsupport/database

>

> Ellen

> 68 NC

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

> In AFIBsupport@y..., " trudyjhnew " <trudyjh@a...> wrote:

> > > - " TIKOSYN has not been shown to be effective in patients with

> > > paroxysmal AF " How weird. Note the med speak " has not been

> shown to be effective " - that's not the same has " has been shown to

> not be effective " . Maybe all it means is they haven't tested it for

> paroxysmal afib.How does tikisyn work anyway?

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

>

>

>

> Web Page http://groups.yahoo.com/group/AFIBsupport

> For more information: http://www.dialsolutions.com/af

> Post message: AFIBsupport

> Subscribe: AFIBsupport-subscribe

> Unsubscribe: AFIBsupport-unsubscribe

> List owner: AFIBsupport-owner

>

>

>

>

[Guest guest]

on Thu, 6 Dec 2001 at 18:21:45, trudyjhnew wrote :

>Web to the rescue. See

>http://www.monroecc.edu/depts/pstc/parasqt.htm

>QTC is a kind of normalized QT.

Aha! Well found.

I see I forgot a square root - I now recall seeing a sqrt sign when my

QT's were being done. But it doesn't make sense to me other than just

that the correlation fits best when square rooted, which is what the

formula implies.

Yes, from what I read, the QTc is derived from the QT so as to eliminate

the effect of heart rate (see the table on that web page). Then a single

number gives you a clue as to whether the patient is at risk, rather

than having to consult the chart. In my game we use this sort of thing

a lot - e.g. dimensionless numbers such as Reynolds number etc.

[OT comment: - I think Monroe Community College is a rather picturesque

building in Rochester NY that I got thrown off the parking lot for

taking innocent photos of the architecture about 15 years ago !! If not,

then another hospital in Rochester!! Anyone from Rochester in this

group?]

Best of health to all,

Vicky

" There is a moment in the life of any problem when it is large

enough to see, but small enough to solve " - anon

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