Re: Question about Telpavir

[Guest guest]

Firstly, I believe that the addition of a protease inhibitor will actually be on the market before the summer of next year. They are getting geared up now for the approval.I do not believe for a moment that it will only be for we NR's. In fact, from a lot of information that I've tracked or that our wonderful Don has posted - not that many NR's have even been given the clinical trial. Fortunately, I was one though! Because of the opportunity, I am now SVR.I did my first tx at the ripe old age of 53/54. The clinical trial was while I was mostly 58. So, I sure don't know about that

- prior to 50. Loads of us won't even find out that we acquired Hep C until after 50 - so the medical systems better get ready for this silent epidemic.By the way, my viral load starting into tx the first time was somewhere in the range of 3 mil and prior to the clinical trial it was 8 mil. But, we all know that the actual numbers are not important until the start and for the finish of treatment. The absolutely most important thing is to learn how much damage has been done to your liver and so far that is usually only done with a biopsy.Gloria

Hi,

I have been lurking here for quite awhile so I will quickly introduce myself.

First I want to say I am grateful for this forum and all the information available. It is a Godsend!

I have genotype 1 (can't remember if its A or and have had it for probably 27 years.

My biopsy from about 5 or 6 years ago showed stage 1 fibrosis stage 2 inflammation. I may not be using the correct terminology but you can get the gist of it. I have been treating with Dr Berksons protocol which I read about here. I have a lot of joint pain that comes and goes and this past year has been a lot in my hands/ wrists. I am getting sick of it. I want to treat this but am waiting on the new therapy as many are. My doctor says it will be "years" before the FDA approves it and if they do it could first be approved for nonresponders. My friend who also has hep c, told me her doctor said the same thing. My last viral load was 450,000. It has been climbing each time- Several years ago it was 100,000 (not million)! I know this is good but I am also approaching 50yrs of age and know that my best chance is before age 50. I am just wondering how long you guys think it will really be before the new treatments get approved.

Thank You!!

[Guest guest]

Gloria,

Thank you for your response. I really don't want to believe my doctor especially

with everything I read here tells me otherwise. Congratulations on reaching SVR,

that is awesome! I love to hear the success stories, they give me hope. This is

such an awful disease- besides being in pain, the stigma attached to it keeps me

somewhat silent about it. I do have close friends and family who support me,

though.

I will keep watching and waiting until FDA approval!

Thanks Again,

>

>

>

> Firstly, I believe that the addition of a protease inhibitor will actually be

on

> the market before the summer of next year. They are getting geared up now for

> the approval.

>

> I do not believe for a moment that it will only be for we NR's. In fact, from

a

> lot of information that I've tracked or that our wonderful Don has posted -

not

> that many NR's have even been given the clinical trial. Fortunately, I was

one

> though!

>

>

> Because of the opportunity, I am now SVR.

>

> I did my first tx at the ripe old age of 53/54. The clinical trial was while

I

> was mostly 58. So, I sure don't know about that - prior to 50. Loads of us

> won't even find out that we acquired Hep C until after 50 - so the medical

> systems better get ready for this silent epidemic.

>

> By the way, my viral load starting into tx the first time was somewhere in the

> range of 3 mil and prior to the clinical trial it was 8 mil. But, we all know

> that the actual numbers are not important until the start and for the finish

of

> treatment. The absolutely most important thing is to learn how much damage

has

> been done to your liver and so far that is usually only done with a biopsy.

>

> Gloria

>

>

>

>

>

>

>

> Hi,

>

> I have been lurking here for quite awhile so I will quickly introduce myself.

> First I want to say I am grateful for this forum and all the information

> available. It is a Godsend!

>

> I have genotype 1 (can't remember if its A or and have had it for probably

27

> years.

> My biopsy from about 5 or 6 years ago showed stage 1 fibrosis stage 2

> inflammation. I may not be using the correct terminology but you can get the

> gist of it. I have been treating with Dr Berksons protocol which I read about

> here. I have a lot of joint pain that comes and goes and this past year has

been

> a lot in my hands/ wrists. I am getting sick of it. I want to treat this but

am

> waiting on the new therapy as many are. My doctor says it will be " years "

before

> the FDA approves it and if they do it could first be approved for

nonresponders.

> My friend who also has hep c, told me her doctor said the same thing. My last

> viral load was 450,000. It has been climbing each time- Several years ago it

was

> 100,000 (not million)! I know this is good but I am also approaching 50yrs of

> age and know that my best chance is before age 50. I am just wondering how

long

> you guys think it will really be before the new treatments get approved.

>

>

> Thank You!!

>

>

[Guest guest]

,First of all welcome. We're all glad you decided to speak up. Hopefully we can answers most of your questions. As far as the new drugs coming out. We can't be sure exactly when they will be released. Signs are pointing towards the end of this year or the early part of next year but we can't be sure. There is still a bit of red tape before everything is approved. That could take weeks or months or longer. I do know they are currently doing clinical trials with the new drug which is getting it a step closer to the general public. When I started tx in 2005 I was told then that the new drugs were coming out soon. That was 5 years ago. I'm glad

I didn't hold my breath. Your viral load can change from day to day, week to week. The only time this number is critical is when you are starting treatment and going thru treatment. It is imperative that this test be run from the same lab each time. Different labs can bring back different values of the same test. The big test that is always accurate is the biopsy. That will tell the extent of damage and is the only variable that can be tested accurately on any given day. The pain you are describing sounds like it might be from Fibromyalgia. This is pretty common among people who have Hep C. My doctor told me that 50% of the people who have Hep C for 5 years or longer will develop Fibromyalgia. It's very possible that is where the pain in your joints, hands and wrist are coming from. I have been diagnosed with

Fibromyalgia and apparently mine set in during the course of treatment for the Hep C. I was 47 when I started treatment and I understand you wanting to get it underway before you turn 50. I have worked in the medical field and in doctor's offices and I know that they have a relationship with the drug company reps and usually have the inside scoop on when these drugs are coming out. The drug reps are aware of how soon the new drugs will be hitting the market because they start talking them up to the doctors before they are out hoping to get the doctor on board with the new drug. If your doctor is saying it might be awhile, he may have some inside information. Personally, I didn't wait on the new drugs and had no intention of waiting on a drug that may or may not help in clearing me. I cleared in 5 weeks with the current therapy. Your

viral load appears to be low enough that the current therapy may just knock it out of the park for you. Is your doctor recommending you start therapy sooner instead of later? Granted the amount of damage that gets caused by waiting a year or so is minimal. This isn't a fast acting virus. However, wanting to get rid of it before it does any more damage is always a plus. Ask your doctor bluntly, if you were his wife, daughter, mother, etc, what course of treatment would he recommend. That's when you will get your most honest answer. That question usually catches them off guard and you will get a candid response. Then with your doctors answer the two of you can chart out the best course of treatment for you. That's just how I handled it, you may or may not be comfortable with that approach. The decision to treat your Hep C is yours and yours alone.

Treatment isn't usually a picnic and can be pretty rough. Everyones walk with treatment is different as I'm sure you've noticed if you've been reading along with us. I hope that answers some of your questions. If you have any more, just let us know. Hugs,Teri From: ilvgr8ps <Marsuk31@...> Sent: Mon, August 23, 2010 8:55:15 PMSubject: [ ] Question about Telpavir

Hi,

I have been lurking here for quite awhile so I will quickly introduce myself.

First I want to say I am grateful for this forum and all the information available. It is a Godsend!

I have genotype 1 (can't remember if its A or and have had it for probably 27 years.

My biopsy from about 5 or 6 years ago showed stage 1 fibrosis stage 2 inflammation. I may not be using the correct terminology but you can get the gist of it. I have been treating with Dr Berksons protocol which I read about here. I have a lot of joint pain that comes and goes and this past year has been a lot in my hands/ wrists. I am getting sick of it. I want to treat this but am waiting on the new therapy as many are. My doctor says it will be "years" before the FDA approves it and if they do it could first be approved for nonresponders. My friend who also has hep c, told me her doctor said the same thing. My last viral load was 450,000. It has been climbing each time- Several years ago it was 100,000 (not million)! I know this is good but I am also approaching 50yrs of age and know that my best chance is before age 50. I am just wondering how long you guys think it will really be before the new treatments get approved.

Thank You!!

[Guest guest]

Teri,

Thanks for your input. I did ask my doctor that question- and he said " treat " . I

am soooo

reluctant- You and all the people who go through treatment are so brave. The

idea of going through the treatment for a year and then the odds of beating are

not so great...

I am going to really pray about this but I do want to see if this new treatment

comes out early next year. My daughter is getting married nov 2011 and I don't

want to be sickly.

Well I will keep reading all of your posts here and let you know when I make a

decision. My friend is going to start treatment (type 2b) in october- she wanted

me to treat at the same time but I am big chicken!!

Oh I have another question--- When I said to the doctor 'only 50% (or so) with

type 1 reach a cure' (one of my arguments for not treating yet) he told me that

by one month we would know if I am responding and the 50% that don't reach a

cure is included in the people the stop EARLY due to non response-- Is this

correct?

Peace,

>

> ,

> First of all welcome. We're all glad you decided to speak up. Hopefully we

can

> answers most of your questions.

>

> As far as the new drugs coming out. We can't be sure exactly when they will

be

> released. Signs are pointing towards the end of this year or the early part

of

> next year but we can't be sure. There is still a bit of red tape before

> everything is approved. That could take weeks or months or longer. I do know

> they are currently doing clinical trials with the new drug which is getting it

a

> step closer to the general public. When I started tx in 2005 I was told then

> that the new drugs were coming out soon. That was 5 years ago. I'm glad I

> didn't hold my breath.

>

> Your viral load can change from day to day, week to week. The only time this

> number is critical is when you are starting treatment and going thru

treatment.

> It is imperative that this test be run from the same lab each time.

Different

> labs can bring back different values of the same test. The big test that is

> always accurate is the biopsy. That will tell the extent of damage and is the

> only variable that can be tested accurately on any given day.

>

> The pain you are describing sounds like it might be from Fibromyalgia. This

is

> pretty common among people who have Hep C. My doctor told me that 50% of the

> people who have Hep C for 5 years or longer will develop Fibromyalgia. It's

> very possible that is where the pain in your joints, hands and wrist are

coming

> from. I have been diagnosed with Fibromyalgia and apparently mine set in

during

> the course of treatment for the Hep C.

>

> I was 47 when I started treatment and I understand you wanting to get it

> underway before you turn 50. I have worked in the medical field and in

doctor's

> offices and I know that they have a relationship with the drug company reps

and

> usually have the inside scoop on when these drugs are coming out. The drug

reps

> are aware of how soon the new drugs will be hitting the market because they

> start talking them up to the doctors before they are out hoping to get the

> doctor on board with the new drug. If your doctor is saying it might be

awhile,

> he may have some inside information.

>

> Personally, I didn't wait on the new drugs and had no intention of waiting on

a

> drug that may or may not help in clearing me. I cleared in 5 weeks with the

> current therapy. Your viral load appears to be low enough that the current

> therapy may just knock it out of the park for you. Is your doctor

recommending

> you start therapy sooner instead of later? Granted the amount of damage that

> gets caused by waiting a year or so is minimal. This isn't a fast acting

virus.

> However, wanting to get rid of it before it does any more damage is always a

> plus. Ask your doctor bluntly, if you were his wife, daughter, mother, etc,

> what course of treatment would he recommend. That's when you will get your

most

> honest answer. That question usually catches them off guard and you will get

a

> candid response. Then with your doctors answer the two of you can chart out

the

> best course of treatment for you. That's just how I handled it, you may or

may

> not be comfortable with that approach.

>

> The decision to treat your Hep C is yours and yours alone. Treatment isn't

> usually a picnic and can be pretty rough. Everyones walk with treatment is

> different as I'm sure you've noticed if you've been reading along with us.

>

> I hope that answers some of your questions. If you have any more, just let us

> know.

>

> Hugs,

> Teri

>

>

>

> ________________________________

> From: ilvgr8ps <Marsuk31@...>

>

> Sent: Mon, August 23, 2010 8:55:15 PM

> Subject: [ ] Question about Telpavir

>

>

> Hi,

>

> I have been lurking here for quite awhile so I will quickly introduce myself.

> First I want to say I am grateful for this forum and all the information

> available. It is a Godsend!

>

> I have genotype 1 (can't remember if its A or and have had it for probably

27

> years.

> My biopsy from about 5 or 6 years ago showed stage 1 fibrosis stage 2

> inflammation. I may not be using the correct terminology but you can get the

> gist of it. I have been treating with Dr Berksons protocol which I read about

> here. I have a lot of joint pain that comes and goes and this past year has

been

> a lot in my hands/ wrists. I am getting sick of it. I want to treat this but

am

> waiting on the new therapy as many are. My doctor says it will be " years "

before

> the FDA approves it and if they do it could first be approved for

nonresponders.

> My friend who also has hep c, told me her doctor said the same thing. My last

> viral load was 450,000. It has been climbing each time- Several years ago it

was

> 100,000 (not million)! I know this is good but I am also approaching 50yrs of

> age and know that my best chance is before age 50. I am just wondering how

long

> you guys think it will really be before the new treatments get approved.

>

>

> Thank You!!

>

>

[Guest guest]

All of us have felt that way. It took me from april to oct to make up my mind and then I had a bad episode with my illness, it attacked my feet and legs and ran high fevers, so I decided to bite the bullet and do treatment.

No one can make the choice for you. Some have all the side effects some dont have many and some like me have the ones they dont list. You wont know until you do it. If you cant handle it you can stop. The key is to drink lots and lots of water. the more water you drink the less the sides. Make sure you have a good caring doc that will monitor you closely. May God watch over you and keep you safe.

From: ilvgr8ps <Marsuk31@...>Subject: [ ] Re: Question about Telpavir Date: Wednesday, August 25, 2010, 6:16 PM

Teri,Thanks for your input. I did ask my doctor that question- and he said "treat". I am sooooreluctant- You and all the people who go through treatment are so brave. The idea of going through the treatment for a year and then the odds of beating are not so great...I am going to really pray about this but I do want to see if this new treatment comes out early next year. My daughter is getting married nov 2011 and I don't want to be sickly.Well I will keep reading all of your posts here and let you know when I make a decision. My friend is going to start treatment (type 2b) in october- she wanted me to treat at the same time but I am big chicken!!Oh I have another question--- When I said to the doctor 'only 50% (or so) with type 1 reach a cure' (one of my arguments for not treating yet) he told me that by one month we would know if I am responding and the 50% that don't reach a cure is included in the people the stop

EARLY due to non response-- Is this correct? Peace,>> ,> First of all welcome. We're all glad you decided to speak up. Hopefully we can > answers most of your questions. > > As far as the new drugs coming out. We can't be sure exactly when they will be > released. Signs are pointing towards the end of this year or the early part of > next year but we can't be sure. There is still a bit of red tape before > everything is approved. That could take weeks or months or longer. I do know > they are currently doing clinical trials with the new drug which is getting it a > step closer to the general

public. When I started tx in 2005 I was told then > that the new drugs were coming out soon. That was 5 years ago. I'm glad I > didn't hold my breath. > > Your viral load can change from day to day, week to week. The only time this > number is critical is when you are starting treatment and going thru treatment. > It is imperative that this test be run from the same lab each time. Different > labs can bring back different values of the same test. The big test that is > always accurate is the biopsy. That will tell the extent of damage and is the > only variable that can be tested accurately on any given day. > > The pain you are describing sounds like it might be from Fibromyalgia. This is > pretty common among people who have Hep C. My doctor told me that 50% of the > people who have Hep C for 5 years or longer will develop Fibromyalgia. It's > very

possible that is where the pain in your joints, hands and wrist are coming > from. I have been diagnosed with Fibromyalgia and apparently mine set in during > the course of treatment for the Hep C. > > I was 47 when I started treatment and I understand you wanting to get it > underway before you turn 50. I have worked in the medical field and in doctor's > offices and I know that they have a relationship with the drug company reps and > usually have the inside scoop on when these drugs are coming out. The drug reps > are aware of how soon the new drugs will be hitting the market because they > start talking them up to the doctors before they are out hoping to get the > doctor on board with the new drug. If your doctor is saying it might be awhile, > he may have some inside information. > > Personally, I didn't wait on the new drugs and had no intention of waiting

on a > drug that may or may not help in clearing me. I cleared in 5 weeks with the > current therapy. Your viral load appears to be low enough that the current > therapy may just knock it out of the park for you. Is your doctor recommending > you start therapy sooner instead of later? Granted the amount of damage that > gets caused by waiting a year or so is minimal. This isn't a fast acting virus. > However, wanting to get rid of it before it does any more damage is always a > plus. Ask your doctor bluntly, if you were his wife, daughter, mother, etc, > what course of treatment would he recommend. That's when you will get your most > honest answer. That question usually catches them off guard and you will get a > candid response. Then with your doctors answer the two of you can chart out the > best course of treatment for you. That's just how I handled it, you may or may

> not be comfortable with that approach. > > The decision to treat your Hep C is yours and yours alone. Treatment isn't > usually a picnic and can be pretty rough. Everyones walk with treatment is > different as I'm sure you've noticed if you've been reading along with us. > > I hope that answers some of your questions. If you have any more, just let us > know. > > Hugs,> Teri> > > > ________________________________> From: ilvgr8ps <Marsuk31@...>> > Sent: Mon, August 23, 2010 8:55:15 PM> Subject: [ ] Question about Telpavir> > > Hi,> > I have been lurking here for

quite awhile so I will quickly introduce myself.> First I want to say I am grateful for this forum and all the information > available. It is a Godsend!> > I have genotype 1 (can't remember if its A or and have had it for probably 27 > years.> My biopsy from about 5 or 6 years ago showed stage 1 fibrosis stage 2 > inflammation. I may not be using the correct terminology but you can get the > gist of it. I have been treating with Dr Berksons protocol which I read about > here. I have a lot of joint pain that comes and goes and this past year has been > a lot in my hands/ wrists. I am getting sick of it. I want to treat this but am > waiting on the new therapy as many are. My doctor says it will be "years" before > the FDA approves it and if they do it could first be approved for nonresponders. > My friend who also has hep c, told me her doctor said the same

thing. My last > viral load was 450,000. It has been climbing each time- Several years ago it was > 100,000 (not million)! I know this is good but I am also approaching 50yrs of > age and know that my best chance is before age 50. I am just wondering how long > you guys think it will really be before the new treatments get approved. > > > Thank You!!> >

[Guest guest]

,I so understand the reluctance to start treatment. The fear of the unknown can be pretty mind boggling. No one knows what type of experience they are going to have with treatment until treatment actually starts. By the second or third shot, you pretty much know what you are in for. Actually with your daughter getting married in November of next year, if you started treatment pretty promptly, you would be done by then. Waiting til the beginning of the year will put you into treatment for the wedding. Treatment is 48 weeks if you start soon you'll be done. Cure is an ify word when it comes to treatment. Most doctors prefer to call it

remission only because there isn't enough data to insure that once you reach SVR you will sustain it. This treatment hasn't been around long enough to determine if 30 years after treatment is over the virus is still gone. Actually 50% is a pretty good number. I was told my chance was 35%. I was/am type 1A. As far as knowing response rate in one month, that's pretty quick. Most doctors don't even check your viral load until week 8. Treatment is usually stopped at week 12 if you are not responding. I was pretty lucky, I cleared at week 6. It's been 5 years since I cleared and I am still sustaining SVR. I know that 50% doesn't sound like good odds. It's really not, but your odds of getting worse without treatment are 100%. Hows that sound? Granted this is a slow moving virus and you delaying treatment even by a year won't change things that much. If you want to be happy and

in good shape for all the pre wedding activities then by all means, wait. This is a decision only you and your family can make. It took me about 10 months from diagnosis to the time I started treatment. I had other issues that had to be cleared out of the way before I could safely go thru that 48 weeks. Once my little problems were taken care of I was ready to tackle the big problem. I can safely say that I was ready both physically and mentally to start treatment and I would advise anyone to put themselves in that same spot. You have to be 100% on target to start treatment. If it takes you awhile to get there than so be it. Do this when YOU are ready to do it. Hope this helps. Hugs,Teri From: ilvgr8ps <Marsuk31@...> Sent: Wed, August 25, 2010 5:16:10 PMSubject: [ ] Re: Question about Telpavir

Teri,

Thanks for your input. I did ask my doctor that question- and he said "treat". I am soooo

reluctant- You and all the people who go through treatment are so brave. The idea of going through the treatment for a year and then the odds of beating are not so great...

I am going to really pray about this but I do want to see if this new treatment comes out early next year. My daughter is getting married nov 2011 and I don't want to be sickly.

Well I will keep reading all of your posts here and let you know when I make a decision. My friend is going to start treatment (type 2b) in october- she wanted me to treat at the same time but I am big chicken!!

Oh I have another question--- When I said to the doctor 'only 50% (or so) with type 1 reach a cure' (one of my arguments for not treating yet) he told me that by one month we would know if I am responding and the 50% that don't reach a cure is included in the people the stop EARLY due to non response-- Is this correct?

Peace,

>

> ,

> First of all welcome. We're all glad you decided to speak up. Hopefully we can

> answers most of your questions.

>

> As far as the new drugs coming out. We can't be sure exactly when they will be

> released. Signs are pointing towards the end of this year or the early part of

> next year but we can't be sure. There is still a bit of red tape before

> everything is approved. That could take weeks or months or longer. I do know

> they are currently doing clinical trials with the new drug which is getting it a

> step closer to the general public. When I started tx in 2005 I was told then

> that the new drugs were coming out soon. That was 5 years ago. I'm glad I

> didn't hold my breath.

>

> Your viral load can change from day to day, week to week. The only time this

> number is critical is when you are starting treatment and going thru treatment.

> It is imperative that this test be run from the same lab each time. Different

> labs can bring back different values of the same test. The big test that is

> always accurate is the biopsy. That will tell the extent of damage and is the

> only variable that can be tested accurately on any given day.

>

> The pain you are describing sounds like it might be from Fibromyalgia. This is

> pretty common among people who have Hep C. My doctor told me that 50% of the

> people who have Hep C for 5 years or longer will develop Fibromyalgia. It's

> very possible that is where the pain in your joints, hands and wrist are coming

> from. I have been diagnosed with Fibromyalgia and apparently mine set in during

> the course of treatment for the Hep C.

>

> I was 47 when I started treatment and I understand you wanting to get it

> underway before you turn 50. I have worked in the medical field and in doctor's

> offices and I know that they have a relationship with the drug company reps and

> usually have the inside scoop on when these drugs are coming out. The drug reps

> are aware of how soon the new drugs will be hitting the market because they

> start talking them up to the doctors before they are out hoping to get the

> doctor on board with the new drug. If your doctor is saying it might be awhile,

> he may have some inside information.

>

> Personally, I didn't wait on the new drugs and had no intention of waiting on a

> drug that may or may not help in clearing me. I cleared in 5 weeks with the

> current therapy. Your viral load appears to be low enough that the current

> therapy may just knock it out of the park for you. Is your doctor recommending

> you start therapy sooner instead of later? Granted the amount of damage that

> gets caused by waiting a year or so is minimal. This isn't a fast acting virus.

> However, wanting to get rid of it before it does any more damage is always a

> plus. Ask your doctor bluntly, if you were his wife, daughter, mother, etc,

> what course of treatment would he recommend. That's when you will get your most

> honest answer. That question usually catches them off guard and you will get a

> candid response. Then with your doctors answer the two of you can chart out the

> best course of treatment for you. That's just how I handled it, you may or may

> not be comfortable with that approach.

>

> The decision to treat your Hep C is yours and yours alone. Treatment isn't

> usually a picnic and can be pretty rough. Everyones walk with treatment is

> different as I'm sure you've noticed if you've been reading along with us.

>

> I hope that answers some of your questions. If you have any more, just let us

> know.

>

> Hugs,

> Teri

>

>

>

> ________________________________

> From: ilvgr8ps <Marsuk31@...>

>

> Sent: Mon, August 23, 2010 8:55:15 PM

> Subject: [ ] Question about Telpavir

>

>

> Hi,

>

> I have been lurking here for quite awhile so I will quickly introduce myself.

> First I want to say I am grateful for this forum and all the information

> available. It is a Godsend!

>

> I have genotype 1 (can't remember if its A or and have had it for probably 27

> years.

> My biopsy from about 5 or 6 years ago showed stage 1 fibrosis stage 2

> inflammation. I may not be using the correct terminology but you can get the

> gist of it. I have been treating with Dr Berksons protocol which I read about

> here. I have a lot of joint pain that comes and goes and this past year has been

> a lot in my hands/ wrists. I am getting sick of it. I want to treat this but am

> waiting on the new therapy as many are. My doctor says it will be "years" before

> the FDA approves it and if they do it could first be approved for nonresponders.

> My friend who also has hep c, told me her doctor said the same thing. My last

> viral load was 450,000. It has been climbing each time- Several years ago it was

> 100,000 (not million)! I know this is good but I am also approaching 50yrs of

> age and know that my best chance is before age 50. I am just wondering how long

> you guys think it will really be before the new treatments get approved.

>

>

> Thank You!!

>

>

[Guest guest]

,What Beth said. Ditto.Hugs,Teri From: Beth Frey <bethfrey42301@...>To:

Sent: Wed, August 25, 2010 5:54:24 PMSubject: Re: [ ] Re: Question about Telpavir

All of us have felt that way. It took me from april to oct to make up my mind and then I had a bad episode with my illness, it attacked my feet and legs and ran high fevers, so I decided to bite the bullet and do treatment.

No one can make the choice for you. Some have all the side effects some dont have many and some like me have the ones they dont list. You wont know until you do it. If you cant handle it you can stop. The key is to drink lots and lots of water. the more water you drink the less the sides. Make sure you have a good caring doc that will monitor you closely. May God watch over you and keep you safe.

[Guest guest]

Hi ,

Teri gave you some excellent info on treatment.

I would like to add a little to it (my opinion). I have not treated, but from

what I have read--Treatment is NOT the answer to all our physical problems.

Teri developed fibro during treatment. Others have developed other problems.

Some get better quickly after tx and some do not. I have developed

diabetes--from my poor eating habits--and family history. Hep C probably had

little to do with that. Treatment would not cure that. Since on my diabetes

pill, I feel much, much better. I know I have a tendency to blame my Hep C for

all my aches and pains--it just ain't so.

You are on Dr B's protocol. Are you taking enough B-12, how is your Vit D

level, are you following his suggested diet and exercise plan?

I think it is great that you are asking questions about treatment before

deciding what to do. At stage 1, you certainly have time to really explore

current treatment and possible future treatment--just as Teri said. And, it is a

personal choice to treat or not--and when it is the best time to treat. No one

(even your doc) can tell you how you are going to do.

SuziQ

>

> ,

> First of all welcome. We're all glad you decided to speak up. Hopefully we

can

> answers most of your questions.

>

> As far as the new drugs coming out. We can't be sure exactly when they will

be

> released. Signs are pointing towards the end of this year or the early part

of

> next year but we can't be sure. There is still a bit of red tape before

> everything is approved. That could take weeks or months or longer. I do know

> they are currently doing clinical trials with the new drug which is getting it

a

> step closer to the general public. When I started tx in 2005 I was told then

> that the new drugs were coming out soon. That was 5 years ago. I'm glad I

> didn't hold my breath.

>

> Your viral load can change from day to day, week to week. The only time this

> number is critical is when you are starting treatment and going thru

treatment.

> It is imperative that this test be run from the same lab each time.

Different

> labs can bring back different values of the same test. The big test that is

> always accurate is the biopsy. That will tell the extent of damage and is the

> only variable that can be tested accurately on any given day.

>

> The pain you are describing sounds like it might be from Fibromyalgia. This

is

> pretty common among people who have Hep C. My doctor told me that 50% of the

> people who have Hep C for 5 years or longer will develop Fibromyalgia. It's

> very possible that is where the pain in your joints, hands and wrist are

coming

> from. I have been diagnosed with Fibromyalgia and apparently mine set in

during

> the course of treatment for the Hep C.

>

> I was 47 when I started treatment and I understand you wanting to get it

> underway before you turn 50. I have worked in the medical field and in

doctor's

> offices and I know that they have a relationship with the drug company reps

and

> usually have the inside scoop on when these drugs are coming out. The drug

reps

> are aware of how soon the new drugs will be hitting the market because they

> start talking them up to the doctors before they are out hoping to get the

> doctor on board with the new drug. If your doctor is saying it might be

awhile,

> he may have some inside information.

>

> Personally, I didn't wait on the new drugs and had no intention of waiting on

a

> drug that may or may not help in clearing me. I cleared in 5 weeks with the

> current therapy. Your viral load appears to be low enough that the current

> therapy may just knock it out of the park for you. Is your doctor

recommending

> you start therapy sooner instead of later? Granted the amount of damage that

> gets caused by waiting a year or so is minimal. This isn't a fast acting

virus.

> However, wanting to get rid of it before it does any more damage is always a

> plus. Ask your doctor bluntly, if you were his wife, daughter, mother, etc,

> what course of treatment would he recommend. That's when you will get your

most

> honest answer. That question usually catches them off guard and you will get

a

> candid response. Then with your doctors answer the two of you can chart out

the

> best course of treatment for you. That's just how I handled it, you may or

may

> not be comfortable with that approach.

>

> The decision to treat your Hep C is yours and yours alone. Treatment isn't

> usually a picnic and can be pretty rough. Everyones walk with treatment is

> different as I'm sure you've noticed if you've been reading along with us.

>

> I hope that answers some of your questions. If you have any more, just let us

> know.

>

> Hugs,

> Teri

>

>

>

>