Re: Infergen

February 2, 2000

Simone

Be grateful you didn't go on Infergen,

it was soooo bad, 10 times worse

than combo. I'm a non-responder

to both! Now in the running for new

clinical trials on a PEG variation.

Good luck, cyn

Hope

>From: Skandalyze@...

>

>Hi Guys,

> I'm Simone and I've probably had this bug for maybe 30 years. Who

really

>knows? I also found out I'd had B and A at one time, but have antibodies.

>But my liver is in 2, 3 and 4 stage now. I've done the Intron-A. Then the

>combo. My blood and thyroid got so messed up that I had to quit after 9

>months, not that much had happened except my viral load had dropped a

>million. From 6 to 5 million, in the first 3 months. But that was it.

>(Lately I've found that the amount doesn't mean much since I was 6 million

in

>June, '98, 125 million in January, '99, and back to 50 million this past

>November! I hear it always fluctuates.

> I had a little problem during the first month of treatment, when my GP

>gave me a sulfa drug for a urinary infection, that I had probably cured on

my

>own with tons of water and vitamin C! But he wanted to be sure to get it

the

>first time, and took a day to culture it and see what would work. He

didn't

>know that sulfa is toxic to the liver. Anyway, I must have gone into near

liv

>er failure............lost 20 pounds overnight. And then had to fight my

way

>back whilst on the treatment!

> Now after 2 years of recoop after treatment, I've had another biopsy

>which shows more liver damage. I'm sure it's more from the sulfa than the

>treatment or the hep. Anyway, it took me 2 years to be able to eat and get

>back to normal. Fill in the folds and get rid of most of the brain fog.

And

>not see white things swimming in my vision! I could have sworn they had

>tails too!

> My thyroid's still whacked. Erratic. Up and down. Can't keep up with

>the dosing for it. But it's better than before. While on the treatment, I

>was growing lumps and bumps under thickening skin. Especially at the

joints

>and on my legs. I wasn't on the Actigall then, so I was tearing my skin

off,

>itching.

> I've studied much. I now get this great newletter from Hepatitis

Update.

> It tells of all hep news as it happens. Some a little not so important.

>But alot of new and upcoming things are on the horizon! The doctors are

even

>saying that it won't be long. Saying to forgo the treatments and wait. I

>see that the Rhibozyme (the DNA snippers) is going to go into trials. It

>sounds promising. The protease inhibitor is getting closer because they've

>finally found out the shape of the virus and now can design an inhibitor to

>fit around it and stop it from replicating. And with all the researchers

(or

>should I say pharmaceutical companies), getting together to work on this

new

>stuff, it shouldn't be too long. There's also something coming that they

>think will boost the immune system to even stop cancer! All these are non

>toxic with no side effects!

> I'm so glad my blood levels wouldn't allow me to go on Infergen! I

could

>have. But with low platelets, low white cells and a chronically off

thyroid,

>I knew there would be trouble. The doctor told me of some others on it,

and

>what it could do. I didn't want to risk going downhill again, after taking

>this long to feel and look semi-human again!

> If any of you want to email me with questions, feel free. I've been

>through it all. And I've been researching for years now. I can't find the

>address for the latest Hep news ..........but I get updates daily,

sometimes

>more often, and I'll post it here.

> Keep the faith..............we're gonna make it..............dammit!

>Just take care of those livers..................water, water, water, milk

>thistle, flax oil..................

>My heart goes out to all of you ....................

> Simone

>

>---------------------------

February 24, 2000

How are you doing now afre the treatment?

February 25, 2000

Gail - I used to think the exact same thing, every time I went to inject

myself!

>-

>

>Actually, I think I must be slightly masochistic!

>

>Gail

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

February 25, 2000

-

Actually, I think I must be slightly masochistic!

Gail

February 25, 2000

It has taken six months to finally feel normal again. I feel better than I

did before starting treatment-about 3 years ago. I am waiting now the

results of the HCV/RNA test to see if I have achieved the six month

sustained response mark. My thyroid tests were OK. It really went crazy

during treatment with Infergen. I guess it was worth it, but I will not try

any interferon treatment again- if I have relapsed. I am lucky- the effects

on my liver were minimal, viral load very low- I can afford to wait if need

be. Not all people can. I have found a supp that is extremely helpful with

the pain from the cryo. That is the reason I went for treatment the second

time around-in the hope that getting HCV in remission would also rid me of

the cryo-that did not happen. I have come to the conclusion that this

chemo/immuno-therapy is not a free ride. We will have to pay one way or

another for the treatment. I think that I am almost done paying

though-Thank God!

Gail

March 16, 2000

Dear ,

That's great news about your viral. Hope it stays undetectable. Do you

mind me asking what your genotype is?

CC

>From: Puente <fpuente@...>

>Reply-Hepatitis Conelist

>Hepatitis Conelist

>Subject: infergen

>Date: Thu, 16 Mar 2000 19:34:30 -0800

>

>got my 12 week viral load report today. I am undetectable with enzymes

>normal. yeah!!!!! And that is about as excited as i can get about

>anything. ha ha........9 1/2 weeks to go. whew. this roller coaster ride

>has been on a down swing this week. thats good though cuz it means next

>week will be gooood. just wanted to share some success in this medicated

>world of ours. this stuff can do the job. my love and support to all.

>your friend in treatment. frank puente

>

March 17, 2000

my viral load dropped from 12.5 million to 300,000 in

6 months. But, I was pulled from Combo for reasons

beyond my control October, 1999. Do you know what

your viral load was? How long did you have Hep before

you found out? I received mine via 28 pints of blood

in 1991. I am just curious. I was daignosed a year

ago last month.....Connie

--- Puente <fpuente@...> wrote:

> got my 12 week viral load report today. I am

> undetectable with enzymes normal. yeah!!!!! And

> that is about as excited as i can get about

> anything. ha ha........9 1/2 weeks to go. whew.

> this roller coaster ride has been on a down swing

> this week. thats good though cuz it means next week

> will be gooood. just wanted to share some success

> in this medicated world of ours. this stuff can do

> the job. my love and support to all. your friend

> in treatment. frank puente

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

March 17, 2000

my viral load dropped from 12.5 million to 300,000 in

6 months. But, I was pulled from Combo for reasons

beyond my control October, 1999. Do you know what

your viral load was? How long did you have Hep before

you found out? I received mine via 28 pints of blood

in 1991. I am just curious. I was daignosed a year

ago last month.....Connie

--- Puente <fpuente@...> wrote:

> got my 12 week viral load report today. I am

> undetectable with enzymes normal. yeah!!!!! And

> that is about as excited as i can get about

> anything. ha ha........9 1/2 weeks to go. whew.

> this roller coaster ride has been on a down swing

> this week. thats good though cuz it means next week

> will be gooood. just wanted to share some success

> in this medicated world of ours. this stuff can do

> the job. my love and support to all. your friend

> in treatment. frank puente

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

March 17, 2000

In a message dated 3/17/00 3:50:01 AM !!!First Boot!!!, fpuente@...

writes:

Hi :

That is great news, keep up the good work, and yes treatment can work I'm

in remission mow for 8 mo. after the end of my treatment.

Take care,

Les

<<

got my 12 week viral load report today. I am undetectable with enzymes

normal. yeah!!!!! And that is about as excited as i can get about anything.

ha ha........9 1/2 weeks to go. whew. this roller coaster ride has been on a

down swing this week. thats good though cuz it means next week will be

gooood. just wanted to share some success in this medicated world of ours.

this stuff can do the job. my love and support to all. your friend in

treatment. frank puente

>>

March 17, 2000

In a message dated 3/17/00 3:50:01 AM !!!First Boot!!!, fpuente@...

writes:

Hi :

That is great news, keep up the good work, and yes treatment can work I'm

in remission mow for 8 mo. after the end of my treatment.

Take care,

Les

<<

got my 12 week viral load report today. I am undetectable with enzymes

normal. yeah!!!!! And that is about as excited as i can get about anything.

ha ha........9 1/2 weeks to go. whew. this roller coaster ride has been on a

down swing this week. thats good though cuz it means next week will be

gooood. just wanted to share some success in this medicated world of ours.

this stuff can do the job. my love and support to all. your friend in

treatment. frank puente

>>

March 17, 2000

YEAH FRANK!

alley/

ICQ 12631861

alleypat@...

http://micromagic.net/~alleypat

<a

href= " /subscribe/DFW_Liver_Disease " >

<img src= " /images/join.gif "

border=0><br>

Click to subscribe to DFW_Liver_Disease</a>

</center>

April 8, 2005

Not sure. I'll have to research that. But any success is better than the O% they had as non-responders.

De

Faith is the ability to not panic.

-----Original Message-----From: Gail Deveaux [mailto:gaila@...] Sent: Friday, April 08, 2005 7:47 PMHepatitis CSupportGroupForDummies Subject: RE: new to the group

Thank you for the information De.Sounds rough but well worth it if it works.Do you know what the success rate of this treatment is?

Gail

October 25, 2005

is sufferring from hep C gen type 3 w/cirrhosis.she is undergoing interferon .she is 62.i am doing my studies and hope to see my mum fine one day(hope that is soon) and give her some good years .i hope u will get well. i know it is tough but hang on ,i think god has chosen people as tough as we are to face hep c.have faith i assure it will work and you will get well.the med u r taking is oral or a shot.what is your viral load.do you hav ascitis?hair fall etc will take care of itself when you get back to normal which will be sson.so hang on and fight.suenmag <suenmag@...> wrote:

Hi I'm a 35yr old female and I have type 1A w/cirrhosis. I failed pegasys last yr and now am on infergen 15mg once a day for the yr. I am getting so frusterated with all this medicine and its still not working. My hair is falling out again, I look like I got into a fight with a cat cause my skin is so dry even w/lotion on. Don't forget the suicidal thoghts every day.!! I would just like to talk with someone who is going thru the same treatment. My family thinks taking the meds is nothing and that this will clear up like right now.

India Matrimony: Find your partner online.

October 25, 2005

hi there i just finish this tx and starting to feel

better i did 60 weeks and been clear sence dec it hard

but if you can do it it will work for you . let me

know how you are doing .

hugs Biker Mike

--- suenmag <suenmag@...> wrote:

> Hi I'm a 35yr old female and I have type 1A

> w/cirrhosis. I failed

> pegasys last yr and now am on infergen 15mg once a

> day for the yr. I

> am getting so frusterated with all this medicine and

> its still not

> working. My hair is falling out again, I look like I

> got into a fight

> with a cat cause my skin is so dry even w/lotion on.

> Don't forget the

> suicidal thoghts every day.!! I would just like to

> talk with someone

> who is going thru the same treatment. My family

> thinks taking the meds

> is nothing and that this will clear up like right

> now.

>

__________________________________

FareChase: Search multiple travel sites in one click.

http://farechase.

October 28, 2005

hey biker mike, so glad to hear you are doing well.

i start my treatment in two weeks and i'm scared. Well i'm trying not to expect the worse but it is hard. i'll keep you posted. you take care!

Tiffymike a <bikermike069@...> wrote:

hi there i just finish this tx and starting to feelbetter i did 60 weeks and been clear sence dec it hardbut if you can do it it will work for you . let meknow how you are doing . hugs Biker Mike--- suenmag <suenmag@...> wrote:> Hi I'm a 35yr old female and I have type 1A> w/cirrhosis. I failed > pegasys last yr and now am on infergen 15mg once a> day for the yr. I > am getting so frusterated with all this medicine and> its still not > working. My hair is falling out again, I look like I> got into a fight > with a cat cause my skin is so dry even w/lotion on.> Don't forget the > suicidal thoghts every day.!! I would just like to> talk with someone

> who is going thru the same treatment. My family> thinks taking the meds > is nothing and that this will clear up like right> now. > > > > __________________________________ FareChase: Search multiple travel sites in one click.http://farechase.

FareChase - Search multiple travel sites in one click.

October 28, 2005

hi i'm an 18 year old female with hep C gen type 3, too. I start treatment in two weeks and I'm scared. I read some of the postings on the conditions of some of these people and alot of it isn't good. My family tells me not to expect the worse, but i still do. This has come at such a crapy time in my life cause i thought i had everything planned out and then this. I'm in love and I can't even start my life with this person until this is cleared up. I guess things will work themselves out. They always do. But i want to ask if you could check up on me every now and then; I know i'll need some reasurance that every thing will be Ok. Thanks.

Tiffy Sourish Mittra <sourish_mittra@...> wrote:

is sufferring from hep C gen type 3 w/cirrhosis.she is undergoing interferon .she is 62.i am doing my studies and hope to see my mum fine one day(hope that is soon) and give her some good years .i hope u will get well. i know it is tough but hang on ,i think god has chosen people as tough as we are to face hep c.have faith i assure it will work and you will get well.the med u r taking is oral or a shot.what is your viral load.do you hav ascitis?hair fall etc will take care of itself when you get back to normal which will be sson.so hang on and fight.suenmag <suenmag@...> wrote: Hi I'm a 35yr old female and I have type 1A w/cirrhosis. I failed pegasys last yr and now am on infergen 15mg once a day for the yr. I am getting so frusterated with all this medicine and its still not working. My hair is falling out again, I look like I got into a fight with a cat cause my skin is so dry even w/lotion on. Don't forget the suicidal thoghts every day.!! I would just like to talk with someone who is going thru the same treatment. My family thinks taking the meds is nothing and that this will clear up like right now.

India Matrimony: Find your partner online.

FareChase - Search multiple travel sites in one click.

October 29, 2005

Tiffeny , you are young and your body is able to fight alot of stuff, you just hang in there and do as your doctor tells you to do. My spouse has had seveare Hep C along with spleenmagnolia, variousies in the stomach and chriosis of the liver. We found this out in 1997 and we went to the internet to the library to the herb store and did alot of research on Hep. C and well he has made it 8 years so far with his own liver, but time they got to him it was to late for interferon so you consider yourself lucky that they caught this early and as I said you are very young and your body has strength to fight off so much more than that of a 49 yr old. We also have a freind whom she did everything the doctor said and now she no longer has the virius I just talked to her today at the doctors offfice today. So I know this is a scarey thing for you, but you have to hang in there and if you beleive in the Lord , turn it over to Him , He knows whats in your heart. God Bless you in all that you

do. Live life to the fullest, life is to short as it is. Take care and I will keep you in my prayers. Tiffeny macyn <sizzlebaby87@...> wrote:

hi i'm an 18 year old female with hep C gen type 3, too. I start treatment in two weeks and I'm scared. I read some of the postings on the conditions of some of these people and alot of it isn't good. My family tells me not to expect the worse, but i still do. This has come at such a crapy time in my life cause i thought i had everything planned out and then this. I'm in love and I can't even start my life with this person until this is cleared up. I guess things will work themselves out. They always do. But i want to ask if you could check up on me every now and then; I know i'll need some reasurance that every thing will be Ok. Thanks.

Tiffy Sourish Mittra <sourish_mittra@...> wrote:

is sufferring from hep C gen type 3 w/cirrhosis.she is undergoing interferon .she is 62.i am doing my studies and hope to see my mum fine one day(hope that is soon) and give her some good years .i hope u will get well. i know it is tough but hang on ,i think god has chosen people as tough as we are to face hep c.have faith i assure it will work and you will get well.the med u r taking is oral or a shot.what is your viral load.do you hav ascitis?hair fall etc will take care of itself when you get back to normal which will be sson.so hang on and fight.suenmag <suenmag@...> wrote: Hi I'm a 35yr old female and I have type 1A w/cirrhosis. I failed pegasys last yr and now am on infergen 15mg once a day for the yr. I am getting so frusterated with all this medicine and its still not working. My hair is falling out again, I look like I got into a fight with a cat cause my skin is so dry even w/lotion on. Don't forget the suicidal thoghts every day.!! I would just like to talk with someone who is going thru the same treatment. My family thinks taking the meds is nothing and that this will clear up like right now.

India Matrimony: Find your partner online.

FareChase - Search multiple travel sites in one click. God Bless Our Children,Save them From Harm

Take away the pain of the world

We have today make the best of it

Always tell the people you cherish,you love them everyday

Don't forget the elderly,they paid their dues in this world

Above all means be good to yourself,take care of your body its the only one you have

FareChase - Search multiple travel sites in one click.

October 29, 2005

hi there tiffy

keep your chin up and you can do it i did it and it is

worth it so if you need any help send me an e mail i

will help what i can

the only thing i thought was bad was being tired all

the time . but rest when you can and drink all the

water you can it helps

HUGS AND GOOD LUCK

--- Tiffeny macyn <sizzlebaby87@...> wrote:

> hey biker mike, so glad to hear you are doing well.

> i start my treatment in two weeks and i'm scared.

> Well i'm trying not to expect the worse but it is

> hard. i'll keep you posted. you take care!

> Tiffy

>

> mike a <bikermike069@...> wrote:

> hi there i just finish this tx and starting to feel

> better i did 60 weeks and been clear sence dec it

> hard

> but if you can do it it will work for you . let me

> know how you are doing .

> hugs Biker Mike

>

> --- suenmag <suenmag@...> wrote:

>

> > Hi I'm a 35yr old female and I have type 1A

> > w/cirrhosis. I failed

> > pegasys last yr and now am on infergen 15mg once a

> > day for the yr. I

> > am getting so frusterated with all this medicine

> and

> > its still not

> > working. My hair is falling out again, I look like

> I

> > got into a fight

> > with a cat cause my skin is so dry even w/lotion

> on.

> > Don't forget the

> > suicidal thoghts every day.!! I would just like to

> > talk with someone

> > who is going thru the same treatment. My family

> > thinks taking the meds

> > is nothing and that this will clear up like right

> > now.

> >

>

> __________________________________

> FareChase: Search multiple travel sites in

> one click.

> http://farechase.

>

October 31, 2005

Tiffy,

I am almost done with treatment. 2 weeks to go. My

worst complaints were (are) itchy skin, (vaseline does

magic), and " the cough " . Both have been my constant

companion for almost 6 months.

Halfway thru treatment my red blood (hemoglobin) went

into danger zone so they added Procrit for my meds. I

take a shot of that once a week. But it sure brought

my energy level back around. I was having a hard time

walking, standing, climbing a flight of stairs, doing

anything when my hemo was low. I would huff and puff

and try to catch my breath just from walking thru the

parking lot at the grocery store. Sometimes I could

not get out of bed I was so worn out! So, I had a

choice when I became anemiac due to treatment, lower

the dose or take Procrit. I wanted treatment to be

successful so I decided on Procrit. It worked! Plus,

I have cleared the virus! My blood work at the 4

month mark showed all clear! I still have to continue

the meds until they are all gone, though. I have to

do the entire 24 weeks.

Good luck, let me know if you need anything.

susan

--- mike a <bikermike069@...> wrote:

> hi there tiffy

> keep your chin up and you can do it i did it and it

> is

> worth it so if you need any help send me an e mail i

> will help what i can

> the only thing i thought was bad was being tired all

> the time . but rest when you can and drink all the

> water you can it helps

> HUGS AND GOOD LUCK

>

> --- Tiffeny macyn <sizzlebaby87@...> wrote:

>

> > hey biker mike, so glad to hear you are doing

> well.

> > i start my treatment in two weeks and i'm scared.

> > Well i'm trying not to expect the worse but it is

> > hard. i'll keep you posted. you take care!

> > Tiffy

> >

> > mike a <bikermike069@...> wrote:

> > hi there i just finish this tx and starting to

> feel

> > better i did 60 weeks and been clear sence dec it

> > hard

> > but if you can do it it will work for you . let me

> > know how you are doing .

> > hugs Biker Mike

> >

> > --- suenmag <suenmag@...> wrote:

> >

> > > Hi I'm a 35yr old female and I have type 1A

> > > w/cirrhosis. I failed

> > > pegasys last yr and now am on infergen 15mg once

> a

> > > day for the yr. I

> > > am getting so frusterated with all this medicine

> > and

> > > its still not

> > > working. My hair is falling out again, I look

> like

> > I

> > > got into a fight

> > > with a cat cause my skin is so dry even w/lotion

> > on.

> > > Don't forget the

> > > suicidal thoghts every day.!! I would just like

> to

> > > talk with someone

> > > who is going thru the same treatment. My family

> > > thinks taking the meds

> > > is nothing and that this will clear up like

> right

> > > now.

> > >

> >

> > __________________________________

> > FareChase: Search multiple travel sites in

> > one click.

> > http://farechase.

> >

January 5, 2007

wish I could help..... find a teaching Univ and go to hepatology dept.....

or GI dept... at TEACHING University.......... I know nothing of TX would

never do it and I just hate it... but that is only me .... could not

handle it physically or mentally. I have had this for forty years and I am

1b so and been advised NOT to do Treatment.. Thank G-d... all the best

wish I do more for you....... hugs, sally

--- megalu_620 <megalu_620@...> wrote:

> Anybody have to take infergen or what's called consensus interferon

> after relapsing following the usual treatment? My doc said my liver

> has gotten even harder making the biopsy difficult since 2 yrs ago.

> just needing to know how bad this 3 times stronger stuff is....

>

> Also anybody really know best place for treatment - -I live in the

> midwest

>

" and the beat goes on....... " Sonny Bono " It's not the years in your life that

count. It's the life in your years. " Abraham Lincoln

__________________________________________________

January 5, 2007

On my third trearmtnt (1st around 12 years ago, 2nd 5 yrs,

last,infergen, just completed one year ago. Still not " clean " .

Anyways the intergen was the heaviest duty treatment that really

knocked me down. I did complete the 48 weeks with my own

stubbornness. My Doc was ready to pull the plug on it somewhere

around week 35, but I wouldn't. Had come so far,not to quit. He

doesn't want to put me on it again for now, as he doesn't want me to

go through the same side affects. They did a biopsy last May (2006)

while they also removed my spleen and gall bladder. Almost died in

hosp. 22 days in ICU plus another 1.5 weeks in a regular room. I'm

back, but with mental and physical problems. Oh, biopsy was still

positive. Am waiting to get on the transplant list.

If you decide to go infergen, DO NOT drink alchohol. I did and paid

for it by not fully responding. Set the year you'll be on it and be

ready to cancel all your normal activities (children, church, work

and family will probably all be affected). This will be a year that

you MUST be a bit selfish. Please try and have your family and

closest friends try to understand all this before beginning. You'll

probably really need their support, not their bitching about you

sleeping all the time, missing dinner, not paying attention to them,

etc. I wouldn't do the infergen on treatments 1 and 2, try the lesser

evils first, then go for the bomb! Good luck, make your best

decisions now and go after what is correct for you.

January 6, 2007

I haven't drank any alcohol for years. felt like crap but actually did pretty ok

on pegintron and ribo for 48 wks. was undetectable within 12 weeks but 6 mos

after done converted back. I'm 1a -- ast and alt only in the 40's but bx showed

stage 3 fibrosis bridging to 4 and bx 1 month ago they say was fragmented

because my liver is worse?? I am at teaching hospital and not havin much faith.

Were you able work at all on infergen? Did all hair come out? could you sleep?

could you eat? Can't decide if I should go this route but the doc is saying I

could be very ill in 1- 3 yrs -- lots of questions...................... lookin

at milk thistle too

Rick Kipp <rickkipp@...> wrote: On my third trearmtnt (1st

around 12 years ago, 2nd 5 yrs,