Introduction

[Guest guest]

I shouldn't be posting so early in the morning, sheesh, It was about a week per month, and not everyone is the same. Seems some sail right on through with little effort.. Yikes, I bet I woke everyone up, sorry! :-o Sheena dorv@... wrote: ONE MONTH for EVERY WEEK?? So it will take me an average of TWO YEARS to recover? Can that be right?? I hope not! Re: IntroductionTo: Hepatitis_C_Central > No two people react exacty the same to treatment, and not all have> lasting sides. I believe my doc said average recovery was > about one> month for every week of treatment, but again, even that > depends on> the person and all involved with them.>

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[Guest guest]

Sure got my juices flowing!!! Although I figured it was the opposite.

Good morning, Sheena!! Re: IntroductionTo: Hepatitis_C_Central > > I shouldn't be posting so early in the morning, sheesh,> It was about a week per month, and not everyone is the same.> Seems some sail right on through with little effort..> Yikes, I bet I woke everyone up, sorry! :-o> > Sheena>

[Guest guest]

Sure got my juices flowing!!! Although I figured it was the opposite.

Good morning, Sheena!! Re: IntroductionTo: Hepatitis_C_Central > > I shouldn't be posting so early in the morning, sheesh,> It was about a week per month, and not everyone is the same.> Seems some sail right on through with little effort..> Yikes, I bet I woke everyone up, sorry! :-o> > Sheena>

[Guest guest]

Good morning to you, It's was way early here on the West Coast. ;-) Sheena dorv@... wrote: Sure got my juices flowing!!! Although I figured it was the opposite. Good morning, Sheena!! Re: IntroductionTo: Hepatitis_C_Central > > I shouldn't be

posting so early in the morning, sheesh,> It was about a week per month, and not everyone is the same.> Seems some sail right on through with little effort..> Yikes, I bet I woke everyone up, sorry! :-o> > Sheena>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi Mike Welcome to the group and hope that you find us helpful. Be prepared to get lots of emails from us. I suggest you go on daily digest because of the influx of email. Check out our files list on the homepage and the database and links. We have lots of info in there. And I intend to update some of the data. I am Janet one of the owner's here and if you have any problems on the site let me know. Its my job. *big smile* Love Janetheethun666 wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures

to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,Mike"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber

[Guest guest]

Although on on the East Coast, I managed to stay in bed till 9 am. I started a heavier dose of prednisone yesterday for the RA and it must have kicked in since I could lay in bed that long and even got up a couple of times to pee without reaching for the cane. And it's a fairly nice day here so I've got the slider open to let Pearl (my kitty) have some fresh air.

Hope everyone has a wonderfull Sunday....it is Sunday, right???? Re: IntroductionTo: Hepatitis_C_Central > Good morning to you, It's was way early here on the West Coast. > ;-)> > Sheena> >

[Guest guest]

Although on on the East Coast, I managed to stay in bed till 9 am. I started a heavier dose of prednisone yesterday for the RA and it must have kicked in since I could lay in bed that long and even got up a couple of times to pee without reaching for the cane. And it's a fairly nice day here so I've got the slider open to let Pearl (my kitty) have some fresh air.

Hope everyone has a wonderfull Sunday....it is Sunday, right???? Re: IntroductionTo: Hepatitis_C_Central > Good morning to you, It's was way early here on the West Coast. > ;-)> > Sheena> >

[Guest guest]

Mike, most of us here have genotype 1 it's the hardest to get rid of. We would jump at being treated for 24 weeks and you have a much higher chance of getting rid of the virus. YOU DON'T WANT TO MESS WITH THIS VIRUS. Its BAD and can start causing you to have other health problems. Good Luck, Steve m human wrote: Jackie, If I may ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned

as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and

my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too

young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt,

like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a

week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells

and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going

to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have.

However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I

haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to

the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at

home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what

to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Just my 2 cents. I'm 2b so I'm lucky in that I only tx for 24 weeks. I have 7 weeks left and I tested undetectable early at 4 weeks which is a really good indicator in terms of success.

I've been infected for DECADES and had I known earlier about the way this virus could screw me up, I would have never waited this long to give tx a shot. I figured why fix what's not broken when in reality, it was really, why fix what doesn't look or feel broken........I WAS broken.

While I feel very hopeful about beating the virus, I don't know if I'll be as lucky to rid myself of some of the illnesses that now may haunt me for the rest of my life.

Don't jump into anything EVER, but keep an open mind.

Dorothy Re: IntroductionTo: Hepatitis_C_Central > Mike, most of us here have genotype 1 it's the hardest to get > rid of. We would jump at being treated for 24 weeks and you have > a much higher chance of getting rid of the virus. YOU DON'T WANT > TO MESS WITH THIS VIRUS. Its BAD and can start causing you to > have other health problems.> > Good Luck,> Steve >

[Guest guest]

Just my 2 cents. I'm 2b so I'm lucky in that I only tx for 24 weeks. I have 7 weeks left and I tested undetectable early at 4 weeks which is a really good indicator in terms of success.

I've been infected for DECADES and had I known earlier about the way this virus could screw me up, I would have never waited this long to give tx a shot. I figured why fix what's not broken when in reality, it was really, why fix what doesn't look or feel broken........I WAS broken.

While I feel very hopeful about beating the virus, I don't know if I'll be as lucky to rid myself of some of the illnesses that now may haunt me for the rest of my life.

Don't jump into anything EVER, but keep an open mind.

Dorothy Re: IntroductionTo: Hepatitis_C_Central > Mike, most of us here have genotype 1 it's the hardest to get > rid of. We would jump at being treated for 24 weeks and you have > a much higher chance of getting rid of the virus. YOU DON'T WANT > TO MESS WITH THIS VIRUS. Its BAD and can start causing you to > have other health problems.> > Good Luck,> Steve >

[Guest guest]

Steve, I agree with you totally. Even tho, I have treated twice I would do again in a heartbeat. I am Genotype 1a. Love Janetsteve brewer wrote: Mike, most of us here have genotype 1 it's the hardest to get rid of. We would jump at being treated for 24 weeks and you have a much higher chance of getting rid of the virus. YOU DON'T WANT TO MESS WITH THIS VIRUS. Its BAD and can start causing you to have other health problems. Good Luck, Steve m human <heethun666> wrote: Jackie, If I may ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and

would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C

'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and

he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I

was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,,

make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to

warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors

or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks

who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know

some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were

taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and

wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search. "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber

[Guest guest]

Steve, I agree with you totally. Even tho, I have treated twice I would do again in a heartbeat. I am Genotype 1a. Love Janetsteve brewer wrote: Mike, most of us here have genotype 1 it's the hardest to get rid of. We would jump at being treated for 24 weeks and you have a much higher chance of getting rid of the virus. YOU DON'T WANT TO MESS WITH THIS VIRUS. Its BAD and can start causing you to have other health problems. Good Luck, Steve m human <heethun666> wrote: Jackie, If I may ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and

would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C

'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and

he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I

was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,,

make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to

warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors

or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks

who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know

some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were

taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and

wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search. "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber

[Guest guest]

very good input you guys,, it really IS a crap shoot but since geno 2's have better chances of reaching SVR, if I was in the right position, then I'd treat... but the point of my telling all about my experience is that there are more like me than are not like me and I feel that everyone needs to make an "informed" decision... but even treating and not reaching SVR 'can' reduce the chances of getting liver cancer but,, still,, just treating does not prevent liver cancer.. and I have know some who have died while on treatment.. I really believe that everyone needs to know most of the facts and look at their "own" life and make the decision whether or not they themselves are in the right

place to treat... Am I glad I treated? Yes and no... Im glad that the virus is gone, however, I have no quality of life left and that is very disturbing but then again, had I not treated when I did, I probably would either be dead now or on a transplant list.. so I totally understand how hard the decision is to make, but as I said before, IF I were only at stage 0-1 of damage and a low grade of inflammation as well, I probably would not have treated when I did and would have taken very very good care of myself to help keep it from going wild and keep a close watch on it so that I 'could' start tx if it started to run amok.. once again, that is just my story,, everyone is different.. dorv@... wrote: Just my 2 cents. I'm 2b so I'm lucky in that I only tx for 24 weeks. I have 7 weeks left and I tested undetectable early at 4 weeks which is a really good indicator in terms of success. I've been infected for DECADES and had I known earlier about the way this virus could screw me up, I would have never waited this long to give tx a shot. I figured why fix what's not broken when in reality, it was really, why fix what doesn't look or feel broken........I WAS broken. While I feel very

hopeful about beating the virus, I don't know if I'll be as lucky to rid myself of some of the illnesses that now may haunt me for the rest of my life. Don't jump into anything EVER, but keep an open mind. Dorothy Re: IntroductionTo: Hepatitis_C_Central > Mike, most of us here have genotype 1 it's the hardest to get > rid of. We would jump at being treated for 24 weeks and you have > a much higher chance of getting rid of the virus. YOU DON'T WANT > TO MESS WITH THIS VIRUS. Its BAD and can start causing you to > have other health problems.> > Good Luck,> Steve > Jackie

[Guest guest]

yes,, it is sunday and we're STILL without power and it looks like it may be until tomorrow until we get it back on,, so the generator is running 24/7 and Im so grateful for it... I'd be nuts with no power to run the TV and the computer,, lol,, Arent you on tx right now? Isnt prednisone not indicated while you are on tx? dorv@... wrote: Although on on the East Coast, I managed to stay in bed till 9 am. I started a heavier dose of prednisone yesterday for the RA and it must have kicked in since I could lay in bed that long and even got up a couple of times to pee without reaching for the cane. And it's a fairly nice day here so I've got the slider open to let Pearl (my kitty) have some fresh air. Hope everyone has a wonderfull Sunday....it is Sunday, right???? Re: IntroductionTo:

Hepatitis_C_Central > Good morning to you, It's was way early here on the West Coast. > ;-)> > Sheena> > Jackie

[Guest guest]

isnt it amazing just how easily fooled they are and believe everything they hear about certain drugs,, lol, I think if every doc experienced what we do while on tx, they 'may' be more inclined to help us treat all the side effects on tx and not be so darned annoying and tell us that it isnt "that bad",, m human wrote: "oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh?" I always wished the folks at the methadone clinic would be required to experience withdrawl before they administered the drug that they said produced minimal withdrawl !!Jackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,,

and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly

what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about

tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote:

unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my

liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who

will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let

anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes

frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right,

everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again,

welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school

(I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie

[Guest guest]

Mike Well prior to treatment, I had a lot of fatigue, muscle and joint pain and actually believe that I had fibro as a child.. then,, after Interferon, I was left with SEVERE Fibromyalgia, SEVERE Chronic Fatigue, my immune system is in over drive causing Rheumatoid Arthritis, Sarcoidosis, I maintain an elevated Sed rate now as well as elevated C-reactive protein. My joints since treatment have really caused me a lot of problems,, have had both knee's injected three times with synvisc, had surgery twice on my right eye for the sarcoidosis, the Interferon caused massive cataracts.. but the most disabling part is the joint and muscle pain along with the chronic inflammation

throughout my body.. THEY NEVER TOLD me that I might end up like this.. Now remember, I was working full time as a 911 paramedic working 24 hours on with 48 hours off, and during that off time, I worked in a salon doing hair and nails AND I taught the EMT class at the community college... So I was very very active and thats why I felt my fatigue was well earned.. but it was, in fact the hep c.. the ONLY labs I had that were not normal were my alt/ast.. my bili and pro time (inr) etc all were normal,, my platelets were normal, my Alk Phosphatase was normal,, only my alt/ ast were elevated and at one point were elevated to 148 and 153.. but I was able to work my schedule and was a trainer for the ambulance service I worked for... then I started tx and by week 12 was so anemic that I couldnt get out of bed to run to the ambulance to run a call, even tho I had a wonderful partner who took every patient and cleaned the ambulance up after every call and all I had to do was

to drive... but I got to the point where I couldnt think straight and got very fearful that I 'might' harm someone by making the wrong decision about patient care.. I have not been able to return to work as I am only out of bed 4-6 hours per day now,, even nearly 5 years since I finished tx. I had to let my paramedic certification go because I couldnt keep up on the recert classes, I let my cosmetology license go as well because there is no way I could work in a salon even part time.. I take Morphine (120 mg ) per day for the pain I have and then because the morphine is sedating, I have to take Provigil to even wake my brain up or Ill never get out of bed.. Im in the hot tub sometimes up to 5 or 6 times per day for the body pain,,, I now use medical cannabis so that I wont have to increase my morphine dose.. My eye that has been operated on is now at 20/100, at one point I was legally blind with 20/200 and so I no longer drive unless its an

emergency. There is no way at night I could drive even IN an emergency as I have no depth perception in that eye any longer. Now that is only the most harrowing sides Im left with,, my brain and short term memory is gone.. I could not even tell you what I ate for Breakfast today if I had to,, in fact, I can't even remember IF I ate breakfast today! My husband has to stay on top of my meds, on top of my meals because I have no memory of them.. another reason that I could never go back on the ambulance.. and the depression that all of this causes is horrible! THEY DONT tell you about this stuff.. Most ppl do not have all of these as permanent side effects, but I DO know most ppl ARE left with some of them.. I know several ppl who NOW have MS from the Interferon tx and have serious brain damage from it.. BUT.. would I treat again? IF my circumstances were the same with stage 3-4 with early cirrhosis and grade

3 inflammation, yes I would treat again... The hep was gonna kill me,, these side effects make my life miserable but are not going to kill me.. so yes, I would treat again IF everything were the same,, but IF I were stage 0 or 1 with grade 0 or 1, NO,, I would make sure I never drank another alcoholic drink, I would make sure I ate enough protein to allow my liver to keep on working, I would drink half my weight (pounds) in ounces of FILTERED water, cut out all sugar, all white flour, all fast foods, and make sure that my liver was watched very closely for changes and hang on for something better and more effective to come out.. but thats me.. as I said, I know many ppl who have treated with stage 1 or 2 and failed tx and their virus has mutated and gone on a rampage when it was fairly quiet before they tried to treat.. and I also know many who have successfully treated and are able to get back to their ongoing life, even in spite of any lasting minor side effects.. I know

one lady who was SVR for 10 years, went on an alcoholic bender for about 6 months and relapsed and had to treat again and is now 3 years SVR again.. but she has cirrhosis and is fairly sick physically.. Standard treatment is all there is for now out there to kill this virus.. They say there is no cure, only remission,, but its gonna be a long long time before we have a treatment that does NOT include Interferons and Ribavirins because the drug pharmy's have invested so much money in them and they 'seem' to be effective in about 50% of those who use them.. which is still better than any other tx for hep,, at this point in time.... So, that is why I really hope you get a biopsy so you will know just what the state of your liver is and IF You need to treat that you do so and have success.. Our forum will do everything we can to help you make it through tx should you decide. We have spared many patients from further harm when some doc prescribes some drug

like 'cymbalta' for depression when it clearly states on the box that its NOT for those with liver disease,, so we at least try to be your back up even tho we are not doc's here.. Janet , our original owner is an RN, Liz and I are ex paramedics so we do have 'some' medical background to help out and we know where to find the answers for you if you have questions.. Liz is in with some of the best Hepatologists in the states so she knows where to go for answers.. and I 'try' to be the best advocate for all here that I can.. Im NOT saying NOT to treat,, Im saying you should get all the facts before you make the decision and you should not wait for years to do that.. this disease does march on so its very important to stop it before it gets too far along.. before it does permanent damage... I was lucky in that all my cirrhosis is GONE.. per my last biopsy in 05! I caught mine at the best time and I was very very lucky.. not all are,, so what I think one should do is to

gather ALL the info before making the decision... I know that 'some' in the medical profession are still very ignorant about what this disease is and how one gets it.. I was also very lucky in that respect because my employer (AMR) was very helpful for me and tried to accomodate my treatment as best they could. I know that not all are as lucky, but what I was told is that I "MUST" tell the HR person IF I decided to treat because while on tx, I would be covered under the ADA bill,, but IF I chose not to tell them and they fired me becasue I could not keep up on my job etc, I'd have no recourse.. and no protection.. so I dont know where you live or what the laws are in your state, but I WOULD advise you to check this out because IF You do decide to treat, you would want to tell the HR person so that you will have this same coverage.. Im fairly certain that it applies in all states of the US.. AND dont forget that you also have the FMLA if you needed to

take some time off of work and be able to keep your job intact even tho the time you take off would be unpaid. You 'may' be able to work as per normal throughout your tx, lets sure hope so ,, but you should learn what your options are before you need them.. Im glad I checked so when I had to stop work, I knew I had short term and long term medical leave as a paid benefit. I hope this hasnt discouraged you too much but like I said, I believe we need to be informed, its too important,, I LOST MY CAREER's because of treatment.. I wouldnt want anyone else to lose theirs... Let us know what you find out when you discuss this with your doc,, what you might want to do is to go to the pharmy page and read the insert that is packaged with each dose of Interferon and Riba and see just what you ARE up against. If your biopsy comes back with early cirrhosis or cirrhosis, then you would want to treat but by then, you'd already know the risks of

treatment and the risks of no treatment. sometimes you just have to jump in with both feet and run the marathon.. we'll help you no matter what you decide,, hugs jax ps, Im sorry this is so long,, too much info for a short post! lol m human wrote: Jackie, If I may

ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd

had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon

and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS

PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and

the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,,

but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you

start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is

easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I

have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is

to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly

and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie

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yes Janet, I too would have loved to only have had to treat for 24 weeks instead of 54 of 60 weeks.. maybe someday they will have a treatment regimine that is less harsh and not so long,, but until then,, this is all we have.. Janet wrote: Steve, I agree with you totally. Even tho, I have treated twice I would do again in a heartbeat. I am Genotype 1a. Love Janetsteve brewer <brewmon2003> wrote: Mike, most of us here have genotype 1 it's the hardest to get rid of. We would jump at being treated for 24 weeks and you have a much higher chance of getting rid of the virus. YOU DON'T WANT TO MESS WITH THIS VIRUS. Its BAD and can start causing you to have other health problems. Good Luck, Steve m human

<heethun666> wrote: Jackie, If I may ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and would probably treat me hugely different, as if I had some sort of air born

koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several

folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like

I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd

been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at

home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I

have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a

handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it

did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the

virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much

damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C

for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences

with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search. "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber Jackie

[Guest guest]

you are VERY welcome hon, thats what we are here for.. You may be very lucky and not have many troubles during tx.. I agree that its really important to talk with your OWN physician and see just what they say.. you are right that every one IS different and your own health is different from anyone else's here.. I do wish you the best, in whatever you decide.. and keep on learning about this disease,,, its the best weapon we have,, lol,, hugs jax m human wrote: Thanks so much for taking the time to explain what your ordeal was like. It sounds like you had quite a hard time with it, but I do know, from what you guys have said, that the treatment experience is different for everyone. I'm supposed to hear back from the nurse educator at the clinic in the next few days and will try to sort some of this out with her. At this point I feel much more informed about the illness in general but still need to know much more about

my particular case. Thanks again, MikeJackie on <redjaxjm> wrote: Mike Well prior to treatment, I had a lot of fatigue, muscle and joint pain and actually believe that I had fibro as a child.. then,, after Interferon, I was left with SEVERE Fibromyalgia, SEVERE Chronic Fatigue, my immune system is in over drive causing Rheumatoid Arthritis, Sarcoidosis, I maintain an elevated Sed rate now as well as elevated C-reactive protein. My joints since treatment have

really caused me a lot of problems,, have had both knee's injected three times with synvisc, had surgery twice on my right eye for the sarcoidosis, the Interferon caused massive cataracts.. but the most disabling part is the joint and muscle pain along with the chronic inflammation throughout my body.. THEY NEVER TOLD me that I might end up like this.. Now remember, I was working full time as a 911 paramedic working 24 hours on with 48 hours off, and during that off time, I worked in a salon doing hair and nails AND I taught the EMT class at the community college... So I was very very active and thats why I felt my fatigue was well earned.. but it was, in fact the hep c.. the ONLY labs I had that were not normal were my alt/ast.. my bili and pro time (inr) etc all were normal,, my platelets were normal, my Alk Phosphatase was normal,, only my alt/ ast were elevated and at one point were elevated to 148 and 153.. but I was able to work my schedule and was a trainer

for the ambulance service I worked for... then I started tx and by week 12 was so anemic that I couldnt get out of bed to run to the ambulance to run a call, even tho I had a wonderful partner who took every patient and cleaned the ambulance up after every call and all I had to do was to drive... but I got to the point where I couldnt think straight and got very fearful that I 'might' harm someone by making the wrong decision about patient care.. I have not been able to return to work as I am only out of bed 4-6 hours per day now,, even nearly 5 years since I finished tx. I had to let my paramedic certification go because I couldnt keep up on the recert classes, I let my cosmetology license go as well because there is no way I could work in a salon even part time.. I take Morphine (120 mg ) per day for the pain I have and then because the morphine is sedating, I have to take Provigil to even wake my brain up or Ill never get out of bed.. Im in the hot

tub sometimes up to 5 or 6 times per day for the body pain,,, I now use medical cannabis so that I wont have to increase my morphine dose.. My eye that has been operated on is now at 20/100, at one point I was legally blind with 20/200 and so I no longer drive unless its an emergency. There is no way at night I could drive even IN an emergency as I have no depth perception in that eye any longer. Now that is only the most harrowing sides Im left with,, my brain and short term memory is gone.. I could not even tell you what I ate for Breakfast today if I had to,, in fact, I can't even remember IF I ate breakfast today! My husband has to stay on top of my meds, on top of my meals because I have no memory of them.. another reason that I could never go back on the ambulance.. and the depression that all of this causes is horrible! THEY DONT tell you about this stuff.. Most ppl do not have all of these as permanent side effects,

but I DO know most ppl ARE left with some of them.. I know several ppl who NOW have MS from the Interferon tx and have serious brain damage from it.. BUT.. would I treat again? IF my circumstances were the same with stage 3-4 with early cirrhosis and grade 3 inflammation, yes I would treat again... The hep was gonna kill me,, these side effects make my life miserable but are not going to kill me.. so yes, I would treat again IF everything were the same,, but IF I were stage 0 or 1 with grade 0 or 1, NO,, I would make sure I never drank another alcoholic drink, I would make sure I ate enough protein to allow my liver to keep on working, I would drink half my weight (pounds) in ounces of FILTERED water, cut out all sugar, all white flour, all fast foods, and make sure that my liver was watched very closely for changes and hang on for something better and more effective to come out.. but thats me.. as I said, I know many ppl who have treated with stage 1 or

2 and failed tx and their virus has mutated and gone on a rampage when it was fairly quiet before they tried to treat.. and I also know many who have successfully treated and are able to get back to their ongoing life, even in spite of any lasting minor side effects.. I know one lady who was SVR for 10 years, went on an alcoholic bender for about 6 months and relapsed and had to treat again and is now 3 years SVR again.. but she has cirrhosis and is fairly sick physically.. Standard treatment is all there is for now out there to kill this virus.. They say there is no cure, only remission,, but its gonna be a long long time before we have a treatment that does NOT include Interferons and Ribavirins because the drug pharmy's have invested so much money in them and they 'seem' to be effective in about 50% of those who use them.. which is still better than any other tx for hep,, at this point in time.... So, that is why I really hope you get a biopsy so you will

know just what the state of your liver is and IF You need to treat that you do so and have success.. Our forum will do everything we can to help you make it through tx should you decide. We have spared many patients from further harm when some doc prescribes some drug like 'cymbalta' for depression when it clearly states on the box that its NOT for those with liver disease,, so we at least try to be your back up even tho we are not doc's here.. Janet , our original owner is an RN, Liz and I are ex paramedics so we do have 'some' medical background to help out and we know where to find the answers for you if you have questions.. Liz is in with some of the best Hepatologists in the states so she knows where to go for answers.. and I 'try' to be the best advocate for all here that I can.. Im NOT saying NOT to treat,, Im saying you should get all the facts before you make the decision and you should not wait for years to do that.. this disease does march on so its very

important to stop it before it gets too far along.. before it does permanent damage... I was lucky in that all my cirrhosis is GONE.. per my last biopsy in 05! I caught mine at the best time and I was very very lucky.. not all are,, so what I think one should do is to gather ALL the info before making the decision... I know that 'some' in the medical profession are still very ignorant about what this disease is and how one gets it.. I was also very lucky in that respect because my employer (AMR) was very helpful for me and tried to accomodate my treatment as best they could. I know that not all are as lucky, but what I was told is that I "MUST" tell the HR person IF I decided to treat because while on tx, I would be covered under the ADA bill,, but IF I chose not to tell them and they fired me becasue I could not keep up on my job etc, I'd have no recourse.. and no protection.. so I dont know where you live or what the laws are in your state, but I

WOULD advise you to check this out because IF You do decide to treat, you would want to tell the HR person so that you will have this same coverage.. Im fairly certain that it applies in all states of the US.. AND dont forget that you also have the FMLA if you needed to take some time off of work and be able to keep your job intact even tho the time you take off would be unpaid. You 'may' be able to work as per normal throughout your tx, lets sure hope so ,, but you should learn what your options are before you need them.. Im glad I checked so when I had to stop work, I knew I had short term and long term medical leave as a paid benefit. I hope this hasnt discouraged you too much but like I said, I believe we need to be informed, its too important,, I LOST MY CAREER's because of treatment.. I wouldnt want anyone else to lose theirs... Let us know what you find out when you discuss this with your doc,, what you might want to do is to go to the

pharmy page and read the insert that is packaged with each dose of Interferon and Riba and see just what you ARE up against. If your biopsy comes back with early cirrhosis or cirrhosis, then you would want to treat but by then, you'd already know the risks of treatment and the risks of no treatment. sometimes you just have to jump in with both feet and run the marathon.. we'll help you no matter what you decide,, hugs jax ps, Im sorry this is so long,, too much info for a short post! lol m human <heethun666> wrote: Jackie, If I may ask, what are the lasting side effects of

the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed

and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get

better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had

fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of

something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the

only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I

would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more

successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't

know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of

EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of

the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo!

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ps.. yes I did have a 'time' with tx but I really felt, at the time that I was really not having such a bad time.. I had it much easier than many others that I knew.. so I felt it was very doable, the treatment that is... m human wrote: Thanks so much for taking the time to explain what your ordeal was like. It sounds like you had quite a hard time with it, but I do know, from what you guys have said, that the treatment experience is different for everyone. I'm supposed to hear back from the nurse educator at the clinic in the next few days and will try to sort some of this out with her. At this point I feel much more informed about the illness in general but still need to know much more about my particular case. Thanks again, MikeJackie on <redjaxjm> wrote: Mike Well prior to treatment, I had a lot of fatigue, muscle and joint pain and actually believe that I had fibro as a child.. then,, after Interferon, I was left with SEVERE Fibromyalgia, SEVERE Chronic Fatigue, my immune system is in over drive causing Rheumatoid Arthritis, Sarcoidosis, I maintain an elevated Sed rate now as well as elevated C-reactive protein. My joints since treatment have really caused me a lot of problems,, have had both knee's injected three times with synvisc, had surgery twice on my right eye for the sarcoidosis, the Interferon caused massive cataracts.. but the most disabling part is the joint and muscle pain along with the chronic inflammation

throughout my body.. THEY NEVER TOLD me that I might end up like this.. Now remember, I was working full time as a 911 paramedic working 24 hours on with 48 hours off, and during that off time, I worked in a salon doing hair and nails AND I taught the EMT class at the community college... So I was very very active and thats why I felt my fatigue was well earned.. but it was, in fact the hep c.. the ONLY labs I had that were not normal were my alt/ast.. my bili and pro time (inr) etc all were normal,, my platelets were normal, my Alk Phosphatase was normal,, only my alt/ ast were elevated and at one point were elevated to 148 and 153.. but I was able to work my schedule and was a trainer for the ambulance service I worked for... then I started tx and by week 12 was so anemic that I couldnt get out of bed to run to the ambulance to run a call, even tho I had a wonderful partner who took every patient and cleaned the ambulance up after every call and all I had to do was

to drive... but I got to the point where I couldnt think straight and got very fearful that I 'might' harm someone by making the wrong decision about patient care.. I have not been able to return to work as I am only out of bed 4-6 hours per day now,, even nearly 5 years since I finished tx. I had to let my paramedic certification go because I couldnt keep up on the recert classes, I let my cosmetology license go as well because there is no way I could work in a salon even part time.. I take Morphine (120 mg ) per day for the pain I have and then because the morphine is sedating, I have to take Provigil to even wake my brain up or Ill never get out of bed.. Im in the hot tub sometimes up to 5 or 6 times per day for the body pain,,, I now use medical cannabis so that I wont have to increase my morphine dose.. My eye that has been operated on is now at 20/100, at one point I was legally blind with 20/200 and so I no longer drive unless its an

emergency. There is no way at night I could drive even IN an emergency as I have no depth perception in that eye any longer. Now that is only the most harrowing sides Im left with,, my brain and short term memory is gone.. I could not even tell you what I ate for Breakfast today if I had to,, in fact, I can't even remember IF I ate breakfast today! My husband has to stay on top of my meds, on top of my meals because I have no memory of them.. another reason that I could never go back on the ambulance.. and the depression that all of this causes is horrible! THEY DONT tell you about this stuff.. Most ppl do not have all of these as permanent side effects, but I DO know most ppl ARE left with some of them.. I know several ppl who NOW have MS from the Interferon tx and have serious brain damage from it.. BUT.. would I treat again? IF my circumstances were the same with stage 3-4 with early cirrhosis and grade

3 inflammation, yes I would treat again... The hep was gonna kill me,, these side effects make my life miserable but are not going to kill me.. so yes, I would treat again IF everything were the same,, but IF I were stage 0 or 1 with grade 0 or 1, NO,, I would make sure I never drank another alcoholic drink, I would make sure I ate enough protein to allow my liver to keep on working, I would drink half my weight (pounds) in ounces of FILTERED water, cut out all sugar, all white flour, all fast foods, and make sure that my liver was watched very closely for changes and hang on for something better and more effective to come out.. but thats me.. as I said, I know many ppl who have treated with stage 1 or 2 and failed tx and their virus has mutated and gone on a rampage when it was fairly quiet before they tried to treat.. and I also know many who have successfully treated and are able to get back to their ongoing life, even in spite of any lasting minor side effects.. I know

one lady who was SVR for 10 years, went on an alcoholic bender for about 6 months and relapsed and had to treat again and is now 3 years SVR again.. but she has cirrhosis and is fairly sick physically.. Standard treatment is all there is for now out there to kill this virus.. They say there is no cure, only remission,, but its gonna be a long long time before we have a treatment that does NOT include Interferons and Ribavirins because the drug pharmy's have invested so much money in them and they 'seem' to be effective in about 50% of those who use them.. which is still better than any other tx for hep,, at this point in time.... So, that is why I really hope you get a biopsy so you will know just what the state of your liver is and IF You need to treat that you do so and have success.. Our forum will do everything we can to help you make it through tx should you decide. We have spared many patients from further harm when some doc prescribes some drug

like 'cymbalta' for depression when it clearly states on the box that its NOT for those with liver disease,, so we at least try to be your back up even tho we are not doc's here.. Janet , our original owner is an RN, Liz and I are ex paramedics so we do have 'some' medical background to help out and we know where to find the answers for you if you have questions.. Liz is in with some of the best Hepatologists in the states so she knows where to go for answers.. and I 'try' to be the best advocate for all here that I can.. Im NOT saying NOT to treat,, Im saying you should get all the facts before you make the decision and you should not wait for years to do that.. this disease does march on so its very important to stop it before it gets too far along.. before it does permanent damage... I was lucky in that all my cirrhosis is GONE.. per my last biopsy in 05! I caught mine at the best time and I was very very lucky.. not all are,, so what I think one should do is to

gather ALL the info before making the decision... I know that 'some' in the medical profession are still very ignorant about what this disease is and how one gets it.. I was also very lucky in that respect because my employer (AMR) was very helpful for me and tried to accomodate my treatment as best they could. I know that not all are as lucky, but what I was told is that I "MUST" tell the HR person IF I decided to treat because while on tx, I would be covered under the ADA bill,, but IF I chose not to tell them and they fired me becasue I could not keep up on my job etc, I'd have no recourse.. and no protection.. so I dont know where you live or what the laws are in your state, but I WOULD advise you to check this out because IF You do decide to treat, you would want to tell the HR person so that you will have this same coverage.. Im fairly certain that it applies in all states of the US.. AND dont forget that you also have the FMLA if you needed to

take some time off of work and be able to keep your job intact even tho the time you take off would be unpaid. You 'may' be able to work as per normal throughout your tx, lets sure hope so ,, but you should learn what your options are before you need them.. Im glad I checked so when I had to stop work, I knew I had short term and long term medical leave as a paid benefit. I hope this hasnt discouraged you too much but like I said, I believe we need to be informed, its too important,, I LOST MY CAREER's because of treatment.. I wouldnt want anyone else to lose theirs... Let us know what you find out when you discuss this with your doc,, what you might want to do is to go to the pharmy page and read the insert that is packaged with each dose of Interferon and Riba and see just what you ARE up against. If your biopsy comes back with early cirrhosis or cirrhosis, then you would want to treat but by then, you'd already know the risks of

treatment and the risks of no treatment. sometimes you just have to jump in with both feet and run the marathon.. we'll help you no matter what you decide,, hugs jax ps, Im sorry this is so long,, too much info for a short post! lol m human <heethun666> wrote: Jackie, If I may ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am going to grill her about all these details that have been left out. I've had this for a number of

years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most

difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is

the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not adequately answered to be able to make the decision about tx, then stand your ground and make him

answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it out and so glad I had that biopsy! jaxm human

<heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold my breath when they took the sample from my liver. They allowed my

husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I started tx because there are some docs who will either reduce your doses

of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn before starting tx and I hope you dont let anyone push you into treatment

before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have English as a first langauge so it's sometimes frustrating talking to them. I did

meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get rid of the virus.. you are right, everyone experiences this tx

differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find answers for you! once again, welcome! I am Jax or jackie,

one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know has.I'm also starting back in school (I"m 46 and returning after many

years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie Never miss a thing. Make Yahoo your homepage. Jackie

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Hi Debbie Well thank you for your kind words but believe me, Im no hero,, lol,, When one is faced with either treating or dying, you do the treating and you have to learn HOW to be positive.. I was so blessed in that I'd only been married a year at the time of my diagnosis but the man I married was truely sent from God! He took over everything and made ME PROMISE just to do whatever I had to in order to finish tx.. I spent a year in bed.. HE took care of everything else.. I was determined that IF I had to spend a year feeling like dog doo, I was gonna do everything in order to make it work THAT time and not have to retreat. yes, there were times I felt like I couldnt go

on and wanted to stop tx but I didnt,, . My doc even said that the 'goal' was to kill the virus, but not me,lol, but I just knew that the first shot was the best shot at killing this virus and no matter how bad I felt, I was going to rejoice in it... I told myself that the worse I felt, the more I knew the treatment was working.. Now, thats not necessarily the truth but I told myself that and so when I felt awful, I thanked God that this treatment was working.. and I had a wonderful Doc in my PCP who, originally believed that because I was in the medical field that I would want to see a specialist, he sent me to the only gastro in my insurance package who turned out to be an idiot... so when I complained twice to my PCP about all fo this, I asked him if he could finish my treatment with me and he agreed,, and he gave me whatever I FELT I NEEDED in order to complete treatment... so in many way, being educated about this disease was truely a saving grace because I could go

to my doc and tell him what I needed and why,, and because he has respect for my education and saw what a paramedic I'd been, he would give me whatever I wanted as long as I could justify it... Now had I not educated myself about this disease, I may have followed the gastro's advice and I would never have cleared.. thats why I am so adamant that we all learn as much as we can about this disease because in my opinion, its OUR RESPONSIBILITY to know.. many ppl just leave all that to the doc and they are badly mistaken because a doc see's so many different people and we are all so different.. If I can do tx, ANYONE can do treatment!!! A lot of being successful in anything is one's attitude... Have you treated yet? jax debbiel21

wrote: >> > Mike> Well prior to treatment, I had a lot of fatigue, ....Well Jackie now your my hero too. How the heck do you put up with all that? People on here amaze me. You all been thru so much and still seem so strong. Got my apt. on Monday to talk bout tx, that's my intention -will see what the dr says. Maybe this is why

the dr. hasn't meantioned it yet. Don't think I could handle even part of what you have. The only plus my daughter's boyfriend would like the med. cannabis. How long can you live with cirrhosis? Crap shoot I guess. Are there signs before liver failure? Here's to all of you. Enjoy your day.Debbie Jackie

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>

>

> Hi Debbie

> Well thank you for your kind words but believe me,

Hi Jackie

No haven't treated yet. See the GI specialist Mon. so getting my list

of questions together. Treatment has not been mentioned just talk of

my portal hyp.. Third banding is next Thurs. which I hope is the

last. So will see what he says Monday. I'm stage 3 grade 4 genotype

1a with ascites and portal hypertension. I figure it's now or never.

Thought I'd do most anything to get out of work but I don't know about

this. Going to work thru it I hope. Yes I will.

Learned alot here -if not too much. LOL

Appreciate all

Cheers

Debbie

[Guest guest]

, congratulations on your pending adoption.

I think it’s truly wonderful that you and your husband are opening your

home and your hearts to this child.

I don’t recall reading anything

about the treatment of HCV in children and I would imagine that you need to see

a pediatric gastroenterologist at the very least to address your questions.

This child is so lucky that you are not

only going to make a home for him/her, but will also provide medical care that

will no doubt make an enormous impact on their life.

Dorothy

From:

Hepatitis_C_Central

[mailto:Hepatitis_C_Central ] On

Behalf Of

Sent: Saturday, January 26, 2008

9:20 AM

To:

Hepatitis_C_Central

Subject:

Introduction

Hi,

My husband and I are in the process of adopting a child from Vietnam

that has HCV. We are still in the beginning stages of learning about

HCV so I was excited to find out about this support group. Do any of

you have children with HCV? There seems to be limited information on

HCV in children from the little I've read. My pediatrician is

currently doing some research for me but I wondered if you guys had any

information about HCV in children?

I appreciate your time! I'm sure I'm going to be asking you guys a lot

of questions in the new future. :-)

[Guest guest]

Welcome to the group hon and we're gonna be here to help you in any way we can. Im sure that somewhere here someone has told you about the group for caregivers that our anne hosts that you might find helpful too. What a very fortunate child this future one of yours is! Hep C is not a death diagnosis and manytimes children clear this virus on their own, but usually at a fairly young age. I believe that education is the most important thing you can do for yourself in regards to this virus. It is ONLY spread by "blood to blood" contact so this child can be loved just like any other child with lots of hugs, kisses and all the things

that parents do for any normal child. We have many members who have had this disease since birth and Im sure that many of them will step up and tell you their stories and tell you how you can parent a child with this disease from the childs perspective. anyway, welcome and please feel free to ask any questions here, we'll all try to help! hugs, jax wrote: Hi,My husband and I are in the process of adopting a child from Vietnam that has HCV. We are still in the beginning stages of learning about HCV so I was excited to find out about this support group. Do any of you have children with HCV? There seems to be limited information on HCV in children from the little I've read. My pediatrician is currently doing some research for me but I wondered if you guys had any information about HCV in children?I appreciate your time! I'm sure I'm going to be asking you guys a lot of questions in the new future. :-)Jackie

[Guest guest]

If the child your adopting is less than 2 yrs old then there is a chance that further tests will show negative hcv . I have had hep for 22yrs and during that time I managed to have 4 additional children they all tested postive at birth but then by age 2 where negative . There is no treatment right now for young children , treatment is done in the later teens that is because the treatment can be harsh on the patients plus I don't think they have safe enough doses for young ones .If you want more info let me know and I can find some stuff for you ..

Introduction

Hi,My husband and I are in the process of adopting a child from Vietnam that has HCV. We are still in the beginning stages of learning about HCV so I was excited to find out about this support group. Do any of you have children with HCV? There seems to be limited information on HCV in children from the little I've read. My pediatrician is currently doing some research for me but I wondered if you guys had any information about HCV in children?I appreciate your time! I'm sure I'm going to be asking you guys a lot of questions in the new future. :-)

[Guest guest]

Welcome to the group . I'm sure you and your husband are well up for

the challenge of a child with HCV.

Liz is our resident researcher. I'm sure she'll have mountains of

information for you. Wait and see. Is there anything you specifically need

Liz to research for you??

Luv

anne

(moderator)

Introduction

> Hi,

>

> My husband and I are in the process of adopting a child from Vietnam

> that has HCV. We are still in the beginning stages of learning about

> HCV so I was excited to find out about this support group. Do any of

> you have children with HCV? There seems to be limited information on

> HCV in children from the little I've read. My pediatrician is

> currently doing some research for me but I wondered if you guys had any

> information about HCV in children?

>

> I appreciate your time! I'm sure I'm going to be asking you guys a lot

> of questions in the new future. :-)

>

>