Re: Peg

[Guest guest]

In a message dated 6/1/00 11:07:51 PM Eastern Daylight Time,

alleypat@... writes:

<< For those who do daily, is it less interferon? 1.5?

- I do daily shots of 3 million. I never heard of anyone doing

less.

Like you, I am having an easy time of it (fingers crossed!). In fact,

speaking of my fingers, my nails are longer and stronger than ever. Weird,

huh?

BTW - I am in my 3rd month, started March 23rd. I'm a 2b and I will beg my

doctor (if need be) to stay on 11 months. I'm really starting to feel that 6

months is too short. That seems to be the consensus of this list and I'm

ready to go the whole distance.

I hope you can persuade your dr. to let you do daily shots. It's no big

whoop.

Peace,

Jane

[Guest guest]

In a message dated 6/1/00 11:07:51 PM Eastern Daylight Time,

alleypat@... writes:

<< For those who do daily, is it less interferon? 1.5?

- I do daily shots of 3 million. I never heard of anyone doing

less.

Like you, I am having an easy time of it (fingers crossed!). In fact,

speaking of my fingers, my nails are longer and stronger than ever. Weird,

huh?

BTW - I am in my 3rd month, started March 23rd. I'm a 2b and I will beg my

doctor (if need be) to stay on 11 months. I'm really starting to feel that 6

months is too short. That seems to be the consensus of this list and I'm

ready to go the whole distance.

I hope you can persuade your dr. to let you do daily shots. It's no big

whoop.

Peace,

Jane

[Guest guest]

In a message dated 6/1/00 11:07:51 PM Eastern Daylight Time,

alleypat@... writes:

<< For those who do daily, is it less interferon? 1.5?

- I do daily shots of 3 million. I never heard of anyone doing

less.

Like you, I am having an easy time of it (fingers crossed!). In fact,

speaking of my fingers, my nails are longer and stronger than ever. Weird,

huh?

BTW - I am in my 3rd month, started March 23rd. I'm a 2b and I will beg my

doctor (if need be) to stay on 11 months. I'm really starting to feel that 6

months is too short. That seems to be the consensus of this list and I'm

ready to go the whole distance.

I hope you can persuade your dr. to let you do daily shots. It's no big

whoop.

Peace,

Jane

[Guest guest]

In a message dated 6/1/00 11:07:51 PM Eastern Daylight Time,

alleypat@... writes:

<< For those who do daily, is it less interferon? 1.5?

- I do daily shots of 3 million. I never heard of anyone doing

less.

Like you, I am having an easy time of it (fingers crossed!). In fact,

speaking of my fingers, my nails are longer and stronger than ever. Weird,

huh?

BTW - I am in my 3rd month, started March 23rd. I'm a 2b and I will beg my

doctor (if need be) to stay on 11 months. I'm really starting to feel that 6

months is too short. That seems to be the consensus of this list and I'm

ready to go the whole distance.

I hope you can persuade your dr. to let you do daily shots. It's no big

whoop.

Peace,

Jane

[Guest guest]

Pat,

I'm sure you know what I think! I'm all for daily dosing, for

everyone. You won't run out early on the interferon, at least you

shouldn't, because there is always overfill. What you run out on is

needles. I've heard that the pharmacy's will often give or sell you extras.

When I was on combo I ended up with a whole bunch of extra needles and

syringes because I was picky about them, and if I didn't like what was

packaged with the vials I asked for something different.

People who's doctor won't prescribe daily dosing usually do 1.5mu daily,

since they can only work with what they have. Usually when a doctor is

prescribing daily dosing the doctor usually prescribes more, either 3mu or

5mu daily. At 1.5mu daily you are only going over the 3 times a week dosing

by 1.5mu, and that's not much.

I am not normally in favor of doing something behind your doctor's

back, and I think it would be better to try to get him to agree to this. If

he is at all reasonable I don't see why he could object too much. You are

already on the combo, and tolerating it well. The dose is just not that

much more, so negligible it's not worth mentioning. The only thing you are

really changing is the frequency of the dosing. You don't even need to

change the prescription. You just need extra needles. However, ultimately

it is YOUR liver, your life, and you have to do what you think is best for

you. You are a 1b, and you need every bit of help you can get. I can

understand your husband's concerns, after all we were all taught to trust

the doctor, and just do what he/she says. But now days, with all the law

suits against doctors, it's easy to understand why they might be afraid to

stick their necks out and go against FDA guidelines, even if that would be

the best thing for you. Also, I go back to what I've said before about

doctors being up to date. Unless they are continually reading all the

journal articles and attending the conferences they will be behind in the

latest information on anything to do with this disease, and that includes

info on daily dosing. Many have seen studies that start with daily dosing,

but then switch to 3 times a week dosing, and the outcomes with those

studies weren't much of an improvement.

I'm afraid I could go on and on about this! So I won't! Ok, that's

what I think. Good luck. When will your doctor do your first PCR?

Claudine

>From: " alley/ " <alleypat@...>

>However, he thinks I should have doctor approval. I told him the doctor

>won't approve it cause it's not approved by FDA etc but everything I've

>read

>tells me that if I can attack the virus nonstop as much as possible the

>first 6 months, I've got a better chance, having 1b, at remission.

>I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume

>I

>stay the same there (I'll just run out faster, but I can reorder a little

>early and so what if I run out at week 40 something instead of 48 if I've

>got it kicked by 6 months)?

>For those who do daily, is it less interferon? 1.5?

>What do yall think?

>alley/

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Pat,

I'm sure you know what I think! I'm all for daily dosing, for

everyone. You won't run out early on the interferon, at least you

shouldn't, because there is always overfill. What you run out on is

needles. I've heard that the pharmacy's will often give or sell you extras.

When I was on combo I ended up with a whole bunch of extra needles and

syringes because I was picky about them, and if I didn't like what was

packaged with the vials I asked for something different.

People who's doctor won't prescribe daily dosing usually do 1.5mu daily,

since they can only work with what they have. Usually when a doctor is

prescribing daily dosing the doctor usually prescribes more, either 3mu or

5mu daily. At 1.5mu daily you are only going over the 3 times a week dosing

by 1.5mu, and that's not much.

I am not normally in favor of doing something behind your doctor's

back, and I think it would be better to try to get him to agree to this. If

he is at all reasonable I don't see why he could object too much. You are

already on the combo, and tolerating it well. The dose is just not that

much more, so negligible it's not worth mentioning. The only thing you are

really changing is the frequency of the dosing. You don't even need to

change the prescription. You just need extra needles. However, ultimately

it is YOUR liver, your life, and you have to do what you think is best for

you. You are a 1b, and you need every bit of help you can get. I can

understand your husband's concerns, after all we were all taught to trust

the doctor, and just do what he/she says. But now days, with all the law

suits against doctors, it's easy to understand why they might be afraid to

stick their necks out and go against FDA guidelines, even if that would be

the best thing for you. Also, I go back to what I've said before about

doctors being up to date. Unless they are continually reading all the

journal articles and attending the conferences they will be behind in the

latest information on anything to do with this disease, and that includes

info on daily dosing. Many have seen studies that start with daily dosing,

but then switch to 3 times a week dosing, and the outcomes with those

studies weren't much of an improvement.

I'm afraid I could go on and on about this! So I won't! Ok, that's

what I think. Good luck. When will your doctor do your first PCR?

Claudine

>From: " alley/ " <alleypat@...>

>However, he thinks I should have doctor approval. I told him the doctor

>won't approve it cause it's not approved by FDA etc but everything I've

>read

>tells me that if I can attack the virus nonstop as much as possible the

>first 6 months, I've got a better chance, having 1b, at remission.

>I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume

>I

>stay the same there (I'll just run out faster, but I can reorder a little

>early and so what if I run out at week 40 something instead of 48 if I've

>got it kicked by 6 months)?

>For those who do daily, is it less interferon? 1.5?

>What do yall think?

>alley/

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

alleypat@... writes:

<< Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)? >>

Well, many insurance companies will not refill early, and Schering will not

give authorization to early filling either, if you are on the commitment to

care program. Who is your carrier?

Sharon Nicholson

Hepatitis Education & Patient Coalition (H. E. P. C.)

Executive Director

<A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B,

C's - editor Suite101.com</A>

http://www.suite101.com/welcome.cfm/hepatitis_abc

Join our e-group mailing list online!

<A HREF= " /group/ArizonaHepatitis C " >eGroups :

ArizonaHepatitis C</A>

/group/ArizonaHepatitis C

[Guest guest]

alleypat@... writes:

<< Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)? >>

Well, many insurance companies will not refill early, and Schering will not

give authorization to early filling either, if you are on the commitment to

care program. Who is your carrier?

Sharon Nicholson

Hepatitis Education & Patient Coalition (H. E. P. C.)

Executive Director

<A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B,

C's - editor Suite101.com</A>

http://www.suite101.com/welcome.cfm/hepatitis_abc

Join our e-group mailing list online!

<A HREF= " /group/ArizonaHepatitis C " >eGroups :

ArizonaHepatitis C</A>

/group/ArizonaHepatitis C

[Guest guest]

alleypat@... writes:

<< Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)? >>

Well, many insurance companies will not refill early, and Schering will not

give authorization to early filling either, if you are on the commitment to

care program. Who is your carrier?

Sharon Nicholson

Hepatitis Education & Patient Coalition (H. E. P. C.)

Executive Director

<A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B,

C's - editor Suite101.com</A>

http://www.suite101.com/welcome.cfm/hepatitis_abc

Join our e-group mailing list online!

<A HREF= " /group/ArizonaHepatitis C " >eGroups :

ArizonaHepatitis C</A>

/group/ArizonaHepatitis C

[Guest guest]

alleypat@... writes:

<< Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)? >>

Well, many insurance companies will not refill early, and Schering will not

give authorization to early filling either, if you are on the commitment to

care program. Who is your carrier?

Sharon Nicholson

Hepatitis Education & Patient Coalition (H. E. P. C.)

Executive Director

<A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B,

C's - editor Suite101.com</A>

http://www.suite101.com/welcome.cfm/hepatitis_abc

Join our e-group mailing list online!

<A HREF= " /group/ArizonaHepatitis C " >eGroups :

ArizonaHepatitis C</A>

/group/ArizonaHepatitis C

[Guest guest]

In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time,

claudinecrews@... writes:

<< it's easy to understand why they might be afraid to

stick their necks out and go against FDA guidelines, >>

I'm sorry - I'm not getting this FDA guideline thing. I go to a liver

specialist in Manhattan and he prescribes all his patients this way -- daily

shots.

Could it really be dependent on the insurance company? Gee, that would be a

surprise...not.

Peace,

Jane

[Guest guest]

In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time,

claudinecrews@... writes:

<< it's easy to understand why they might be afraid to

stick their necks out and go against FDA guidelines, >>

I'm sorry - I'm not getting this FDA guideline thing. I go to a liver

specialist in Manhattan and he prescribes all his patients this way -- daily

shots.

Could it really be dependent on the insurance company? Gee, that would be a

surprise...not.

Peace,

Jane

[Guest guest]

I'm trying to convince my husband that I can do every other day dosing with

the interferon. Heck I could probably handle daily dosing cause I'm having

no sides and feel better than I have in years.

However, he thinks I should have doctor approval. I told him the doctor

won't approve it cause it's not approved by FDA etc but everything I've read

tells me that if I can attack the virus nonstop as much as possible the

first 6 months, I've got a better chance, having 1b, at remission. My

husband is a stubborn man I know he is concerned and rightly so.

I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)?

For those who do daily, is it less interferon? 1.5?

I'm really doing well with the sides and I want to get as aggressive as I

can with it, and watch my blood work closely. But I don't want to do the

wrong thing.

What do yall think?

alley/

ICQ 12631861

alleypat@...

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

[Guest guest]

I'm trying to convince my husband that I can do every other day dosing with

the interferon. Heck I could probably handle daily dosing cause I'm having

no sides and feel better than I have in years.

However, he thinks I should have doctor approval. I told him the doctor

won't approve it cause it's not approved by FDA etc but everything I've read

tells me that if I can attack the virus nonstop as much as possible the

first 6 months, I've got a better chance, having 1b, at remission. My

husband is a stubborn man I know he is concerned and rightly so.

I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)?

For those who do daily, is it less interferon? 1.5?

I'm really doing well with the sides and I want to get as aggressive as I

can with it, and watch my blood work closely. But I don't want to do the

wrong thing.

What do yall think?

alley/

ICQ 12631861

alleypat@...

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

[Guest guest]

I'm trying to convince my husband that I can do every other day dosing with

the interferon. Heck I could probably handle daily dosing cause I'm having

no sides and feel better than I have in years.

However, he thinks I should have doctor approval. I told him the doctor

won't approve it cause it's not approved by FDA etc but everything I've read

tells me that if I can attack the virus nonstop as much as possible the

first 6 months, I've got a better chance, having 1b, at remission. My

husband is a stubborn man I know he is concerned and rightly so.

I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)?

For those who do daily, is it less interferon? 1.5?

I'm really doing well with the sides and I want to get as aggressive as I

can with it, and watch my blood work closely. But I don't want to do the

wrong thing.

What do yall think?

alley/

ICQ 12631861

alleypat@...

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

[Guest guest]

I'm trying to convince my husband that I can do every other day dosing with

the interferon. Heck I could probably handle daily dosing cause I'm having

no sides and feel better than I have in years.

However, he thinks I should have doctor approval. I told him the doctor

won't approve it cause it's not approved by FDA etc but everything I've read

tells me that if I can attack the virus nonstop as much as possible the

first 6 months, I've got a better chance, having 1b, at remission. My

husband is a stubborn man I know he is concerned and rightly so.

I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume I

stay the same there (I'll just run out faster, but I can reorder a little

early and so what if I run out at week 40 something instead of 48 if I've

got it kicked by 6 months)?

For those who do daily, is it less interferon? 1.5?

I'm really doing well with the sides and I want to get as aggressive as I

can with it, and watch my blood work closely. But I don't want to do the

wrong thing.

What do yall think?

alley/

ICQ 12631861

alleypat@...

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

[Guest guest]

> I'd like to see a

>study on Peg, ribavirin, and amantadine, all together.

Claudine:

There is a study in progress with the above three. The one study I know of

has four arms as follows:

Randomized PEG study (ROCHE) with four arms

for relapsers:

1) PEG plus Ribavirin

2) PEG plus Amantidine

3) PEG plus Ribaviron & Amantidine

4) PEG plus Cellcept

[Guest guest]

> I'd like to see a

>study on Peg, ribavirin, and amantadine, all together.

Claudine:

There is a study in progress with the above three. The one study I know of

has four arms as follows:

Randomized PEG study (ROCHE) with four arms

for relapsers:

1) PEG plus Ribavirin

2) PEG plus Amantidine

3) PEG plus Ribaviron & Amantidine

4) PEG plus Cellcept

[Guest guest]

> I'd like to see a

>study on Peg, ribavirin, and amantadine, all together.

Claudine:

There is a study in progress with the above three. The one study I know of

has four arms as follows:

Randomized PEG study (ROCHE) with four arms

for relapsers:

1) PEG plus Ribavirin

2) PEG plus Amantidine

3) PEG plus Ribaviron & Amantidine

4) PEG plus Cellcept

[Guest guest]

> I'd like to see a

>study on Peg, ribavirin, and amantadine, all together.

Claudine:

There is a study in progress with the above three. The one study I know of

has four arms as follows:

Randomized PEG study (ROCHE) with four arms

for relapsers:

1) PEG plus Ribavirin

2) PEG plus Amantidine

3) PEG plus Ribaviron & Amantidine

4) PEG plus Cellcept

[Guest guest]

Dear Jane,

The insurance CAN be a problem, they can say anything more than 3 times

a week is experimental, and refuse to pay for more than that. But the

doctor would have to prescribe it first in order to know if they would pay

or not. And there are just too many people out there like you, getting daily

dosing, to think it would always be insurance problems. No, you just are

one of the lucky ones who's doctor WILL prescribe daily. Many just won't do

it. They could, but they just WON'T. Also, as far as insurance goes, many

times if the doctor will just go to bat for you, and explain why you need

what they are refusing to pay, the insurance company will reverse it's

decision. So again, it goes back to the doctor. My doctor is one of the

ones who won't prescribe daily injections. He doesn't think they work any

better. He's attending a conference later this month, maybe he'll learn

something there. Unfortunately I'm stuck with him for the next 7 months.

Fortunately, I can afford to wait, my last biopsy on my liver was only

stage 1, and 53 weeks of treatment probably improved it's condition some.

Claudine

>From: Jane2370@...

>In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time,

>claudinecrews@... writes:

><< it's easy to understand why they might be afraid to

> stick their necks out and go against FDA guidelines, >>

>I'm sorry - I'm not getting this FDA guideline thing. I go to a liver

>specialist in Manhattan and he prescribes all his patients this way --

>daily

>shots.

>Could it really be dependent on the insurance company? Gee, that would be

>a

>surprise...not.

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Dear Jane,

The insurance CAN be a problem, they can say anything more than 3 times

a week is experimental, and refuse to pay for more than that. But the

doctor would have to prescribe it first in order to know if they would pay

or not. And there are just too many people out there like you, getting daily

dosing, to think it would always be insurance problems. No, you just are

one of the lucky ones who's doctor WILL prescribe daily. Many just won't do

it. They could, but they just WON'T. Also, as far as insurance goes, many

times if the doctor will just go to bat for you, and explain why you need

what they are refusing to pay, the insurance company will reverse it's

decision. So again, it goes back to the doctor. My doctor is one of the

ones who won't prescribe daily injections. He doesn't think they work any

better. He's attending a conference later this month, maybe he'll learn

something there. Unfortunately I'm stuck with him for the next 7 months.

Fortunately, I can afford to wait, my last biopsy on my liver was only

stage 1, and 53 weeks of treatment probably improved it's condition some.

Claudine

>From: Jane2370@...

>In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time,

>claudinecrews@... writes:

><< it's easy to understand why they might be afraid to

> stick their necks out and go against FDA guidelines, >>

>I'm sorry - I'm not getting this FDA guideline thing. I go to a liver

>specialist in Manhattan and he prescribes all his patients this way --

>daily

>shots.

>Could it really be dependent on the insurance company? Gee, that would be

>a

>surprise...not.

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Sharon.. Caremark provides my combo

alley/

ICQ 12631861

alleypat@...

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

[Guest guest]

In a message dated 6/1/00 9:44:37 PM Pacific Daylight Time, Jane2370@...

writes:

<< << For those who do daily, is it less interferon? 1.5?

- I do daily shots of 3 million. I never heard of anyone doing

less >>

During my treatment I was doing 5 million IU daily for the first 6

months, and the went to 3 million IU daily for the last 5 months of

treatment. In the study I was in there was some people doing as much a 10

million IU daily.

Take care,

Les

[Guest guest]

Claudine:

Yes. " No say " since you are 'randomized'.

>Dear ,

> Thanks for the info. Is this the study where you are randomly

assigned

>to receive one of the 4 combinations, but have no say-so on which you get?

>I wish the study included more than just relapsers. I'm eager to hear the

>results!

>Claudine

>

>

>>From: " gorski " <gorski@...>

>>

>>There is a study in progress with the above three. The one study I know of

>>has four arms as follows:

>>

>>Randomized PEG study (ROCHE) with four arms

>>for relapsers:

>>

>>1) PEG plus Ribavirin

>>2) PEG plus Amantidine

>>3) PEG plus Ribaviron & Amantidine

>>4) PEG plus Cellcept

>>

>>

>>

>>

>