Re: Back Among the Living

September 9, 2000

Dear Lora,

I'm glad to hear you survived the " First One " !

The rest are usually so much easier than #1.

I have seen evidence that every other day is

slightly better, but I don't have it here at my

fingertips to send, and I'm pretty sure I didn't save

it, because it was mainly charts, which don't copy,

but I will see if I can find it. I am leaving Wed. am

to go to the coast for a few days. I'm not sure if

I'll have much time between now and then though.

However, what I saw was a chart graphing the

interferon levels, and how they dwindle away to

nothing during the first 24 hours after the injection,

and a chart showing viral rebound as the interferon

wore off. When you come to that extra day off from

injecting, the viral count really climbed a lot. By

injecting every other day you eliminate that one day

when the virus has even more chance to rebound. Also,

injecting every other day doesn't make your sides any

worse, if that is what you are worried about. In

fact, often that first injection after that extra day

break will have slightly worse sides all over again. I

guess it's just too long of a time between. If I find

this chart (or anything else) I will post it.

Take care, and good luck!!

Claudine

=====

claudinecrews@...

__________________________________________________

September 9, 2000

Claudine, thanks for the info. It makes plain sense to me that every other

day would keep the virus from replicating too much on that off day. However,

I would think that the people who do the research and dream up the doses

would have figured out every other day as opposed to three times a week.

OR... Are we all just a bit smarter? Just think, I could be working for the

drug companies, telling them what's what.... Kind of a scarey thought.

Seriously though, if we figured it out, why didn't the drug companies??????

Thanks for looking for the information. Have fun at the coast--hope it is a

pleasure trip.

Lora.................

September 9, 2000

--- Lorad8@... wrote:

However,

> I would think that the people who do the research

> and dream up the doses

> would have figured out every other day as opposed to

> three times a week.

Dear Lora,

From what I understand, the way they came up with

the dosing for interferon use in hepatitis C was that

it was already used 3 times a week in other

situations, such as cancer. Apparently it worked ok

for that. So no other dosing frequency was studied.

(I bet that saved a lot of research money!!)

Unfortunately it doesn't work too well for HCV at only

3 times a week. This virus recovers and multiplies

way too fast to give it that break, even a one day

break.

Claudine

=====

claudinecrews@...

__________________________________________________

September 9, 2000

So.. my physician's asst lied to me when she told me that the 3X a week

dosing was because the body needed a break? Believe me I asked that specific

question (cause I wanted every other day dosing) and had to insist she speak

with the Gastro in charge and get his thoughts on it. He agreed. Because I

tolerated it well, it was a good option for me. At any time I can reduce the

dosing, with my doctor's approval of course. I think she really didn't lie,

but it's what she " believed " to be true.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

September 9, 2000

Claudine,

Hope this finds you well and am hoping you find the chart graphing the

interferon levels, and how they dwindle away. Maybe you could lead me to a

site that explains that more and has a chart. Since my husband has to stay

on the Combo for another 6 months to a year after being on it a year this

month already we want to talk to the doctor about everyday dosing now instead

of everyother day. We see the doctor again this Wed. He has been feeling

really bad around the liver area of his stomach and it hurts so the doctor

ran a unltra sound on him and we don't know the results of that yet. Thanks

ahead of time. Staying positive.

Winne

September 10, 2000

Alleypat,

How do you work the perscirption as far as insurance goes?? I am using the

pen, but will eventually have to be playing catch-up since my insurance only

pays for 30 days at a time. How does your doctor handle it?

Lora

September 10, 2000

--- " Ken & Pat @home " <alleypat@...> wrote:

I think

> she really didn't lie,

> but it's what she " believed " to be true.

Dear alley,

I think you are right. It's not that she, or

most of the nurses or doctors are lying, they really

just don't know. Saying the body needs a break SOUNDS

reasonable. But it gives the virus a break too, and

the virus recovers VERY, VERY quickly. Hopefully the

pegylated interferons are going to solve THAT

particular problem.

Claudine

=====

claudinecrews@...

__________________________________________________

September 10, 2000

Hi Winnie,

I will try to find it again, but I am leaving

Wed. to go to the coast for a few days (a women only

trip!!!) so I don't know if I can do it before then.

Being a real novice to computers, I filed all my

articles and such in e-mail folders. I had one

special email account I opened specifically because it

had a large storage limit, and they have now shut

down. Even worse, they shut down one month earlier

than they said they were going to so now I have lost a

lot of my information! But if I found it once, I'm

sure I can find it again, it may just take a while. If

your doctor says that daily is no more effective, then

ask him why the pegylateds are more effective than the

3 X a week dosing! It is the EXACT same interferon,

with just the peg molecule added to make it last

longer. If there is any way for your husband to switch

to the pegylated that would be ideal as that keeps an

even more sustained pressure on the virus. And it

looks like the Roche brand works better for people

with cirrhosis. I am afraid that the patent

infringement filed against them will delay it, but I

hope not.

I hope his ultrasound turns out all right. Good

luck!

Claudine

=====

claudinecrews@...

__________________________________________________

September 10, 2000

Claudine

Have a good time on your woman only trip I need one of those so bad. When

ever you run across the information you can let me know. I have lost things

due to email to that I had saved or thought I had and it is so frustrating

when you go to locate it. Maybe I am catching my husbands brain fog he has

such a problem with that. I have begun to print the real important

information and filing it in folders but I need to catch them up to you just

never know when something you have will help someone else. I will lay it on

the doctor the way you said Wed. and let you know how the ultra sound went.

Thanks again.

Winne

September 11, 2000

FYI:

From what I understand, INF is completely out of your system in less then

24 hours, so the virus can start reproducing on the day you don't have your

shot, that is why doctor in the know went to daily dosing, that has a much

greater chance of clearing the virus. Then from daily dosing has come the peg

INF that keeps the INF in your system for a week, so the INF is at work

killing the virus until you take your next. Therefor even every other day

shots of the old INF make it less likely to have a sustained response to

treatment.

Take care,

Les

September 11, 2000

In a message dated 9/9/00 10:17:34 PM Pacific Daylight Time,

alleypat@... writes:

<<

So.. my physician's asst lied to me when she told me that the 3X a week

dosing was because the body needed a break? Believe me I asked that specific

question (cause I wanted every other day dosing) and had to insist she speak

with the Gastro in charge and get his thoughts on it. He agreed. Because I

tolerated it well, it was a good option for me. At any time I can reduce the

dosing, with my doctor's approval of course. I think she really didn't lie,

but it's what she " believed " to be true.

alley/ >>

Yes Alley she lied to you, or at least she was very much miss informed.

Take care,

Les

September 11, 2000

Lora..

Well the combo with my ins company (Caremark for pharmacy) is $15 per 3

months sent fedex.

Normally, if I get my script at a local pharmacy I can only get one month's

worth and it costs $15 for brand name/$5 for generic. But here combo is only

available thru mail as I think they prolly have some deal with a company

thing. Don't ask me details I dunno.

My doc just orders extra on the script since I'm doing more than than the

standard 3 X a week. I'll end up with mucho more ribavarin in the end, but

hey, not my problem. They won't unbundle it when they send it (Schering's

thing I think). My problem is eradicating the hep dadgummit! )

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

September 11, 2000

--- LEST2001@... wrote:

Therefor

> even every other day

> shots of the old INF make it less likely to have a

> sustained response to

> treatment.

Dear Les,

You are SO right!

Claudine

__________________________________________________

September 11, 2000

OK, I am lost. What you are saying is that every other day dosing makes it

LESS likely to have a sustained response? Less likely than what? Every day

dosing? Also , does that mean that every other day is WORSE than 3X a

week????

Lora

September 12, 2000

Hi Lora:

I'll try to be a little clearer, form what has worked for me, and all I

have read.

Three times a week: Not to good.

Every other day: Is a little better.

Every day: Is the best

The new peg INF. Should be better then all the above.

Keep in mind that the INF is only at work in your body for about 23 hours

after you take your shot.

Think of it like this, HCV virus is a fire burning in your body, and INF

is the water that will put that fire out, you have a much better chance of

putting the fire out for good, if you keep water on that fire all the time,

then if you only throw water on the fire every other day. The new peg INF is

la time-release medication that will stay active in your body for a week

before you need another injection.

Take care,

Les

OK, I am lost. What you are saying is that every other day dosing makes it

LESS likely to have a sustained response? Less likely than what? Every day

dosing? Also, does that mean that every other day is WORSE than 3X a

week????

Lora >>

September 12, 2000

--- Lorad8@... wrote:

> OK, I am lost. What you are saying is that every

> other day dosing makes it

> LESS likely to have a sustained response? Less

> likely than what? Every day

> dosing? Also , does that mean that every other day

> is WORSE than 3X a

> week????

> Lora

>

Lora,

Every other day dosing is a little better than

three times a week dosing. It eliminates one extra

day when the virus is able to rebound and multiply.

But it is not nearly as good as DAILY dosing. With

daily dosing you eliminate all the inbetween days when

the virus has the chance to recuperate and multiply.

Sorry for the confusion. Does this clarify it?

Claudine

__________________________________________________

September 12, 2000

--- Lorad8@... wrote:

> OK, I am lost. What you are saying is that every

> other day dosing makes it

> LESS likely to have a sustained response? Less

> likely than what? Every day

> dosing? Also , does that mean that every other day

> is WORSE than 3X a

> week????

> Lora

>

Lora,

Every other day dosing is a little better than

three times a week dosing. It eliminates one extra

day when the virus is able to rebound and multiply.

But it is not nearly as good as DAILY dosing. With

daily dosing you eliminate all the inbetween days when

the virus has the chance to recuperate and multiply.

Sorry for the confusion. Does this clarify it?

Claudine

__________________________________________________

September 13, 2000

In a message dated 9/12/00 8:22:54 AM Pacific Daylight Time,

claudineintexas@... writes:

<<

Lora,

Every other day dosing is a little better than

three times a week dosing. It eliminates one extra

day when the virus is able to rebound and multiply.

But it is not nearly as good as DAILY dosing. With

daily dosing you eliminate all the in-between days when

the virus has the chance to recuperate and multiply.

Sorry for the confusion. Does this clarify it?

Claudine

>>

Hi Claudine:

You sure explained that much better then I, you have an excellent way

with words.

Take care,

Les

September 13, 2000

In a message dated 9/12/00 8:22:54 AM Pacific Daylight Time,

claudineintexas@... writes:

<<

Lora,

Every other day dosing is a little better than

three times a week dosing. It eliminates one extra

day when the virus is able to rebound and multiply.

But it is not nearly as good as DAILY dosing. With

daily dosing you eliminate all the in-between days when

the virus has the chance to recuperate and multiply.

Sorry for the confusion. Does this clarify it?

Claudine

>>

Hi Claudine:

You sure explained that much better then I, you have an excellent way

with words.

Take care,

Les

September 13, 2000

Lora,

Sounds like a good idea to start the injection a little earlier, it can

change as treatment continues so just remember you can cahnge those times to

suit your needs. It will be a long road a head but hang in there lots of

us have gone through it and know what you are feeling and our availbele to

lend you encouragement. I myself just started week 28 almost 29 here on

Friday and can't believe how the time has flown. am feeling a little wimpy

myself today as took my shot about 2:30, earlier than usaual and am

feeling it. but then have been under a lot of stress lately. Hng in there

i5t is rough at first for most people but then the side effects do get

better. thoughts and prayers are with you.

Suzy

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September 13, 2000