To treat or Not to Treat

[Guest guest]

Your doctor isnt up on the most recent data , the % rate for sustained viralogical response in geno type 1's is now up to about 75% . Depending on what site you get your information on . I am just starting treatment round number 4 , and to me its worth the sides to rid my body of a disease that is slowly killing me . But the decision to treat is a personal decision , one that you must feel comfortable with . And yes I would advise you to see a hepatologist instead of a GI .

To treat or not to treat

Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger

[Guest guest]

On 12/15/05, gingertumeric <kswift@...> wrote:

So my question is should I get a second opinion? I would.

Also are people (with type 1) going through treatment because they

are in later stages and those in early stages are waiting till a

better option comes available? I'm a 1b who is treating (week 32 of 48) even though I am not in the late stages.Good luck with a tough decision,D

[Guest guest]

Your doctor is absolutely correct on the SVR (sustained viral response=viral load undetected 6 mos after end of treatment). The 75-85% SVR is for genotype 2 & 3. Without any fibrosis, and the fact that treatment can make your PBC worse, I think you should forego treatment. Having HCV for so long with no liver damage, the chances of progression of the HCV at this point is quite low. Do get that second opinion just to confirm. The reasons people choose to do therapy are as varied as the number of people who have the disease. Some genotype 1's have lots of damage. Some can't stand the thought of living with a virus in their bodies. Genotype should not be a reason to forego tretment. The amount of damage may be a good reason to wait.gingertumeric <kswift@...> wrote: Hi,I have Hep C and PBC, an autoimmune

liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American

nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger

Find Great Deals on Holiday Gifts at

[Guest guest]

No Delores, The new findings is that genotype 1 has increased. This is the latest findings. I will find that information out for you. Or get Liz to find it, as she is our resident researcher now. That is why I decided to re-treat. When my doctor and I decided to re-treat is because we had both read and studied the new information. Don't want to argue or anything but that is the info that I had. Love JanetDelores DelRio <dramamyqueen@...> wrote: Your doctor is absolutely correct on the SVR (sustained viral response=viral load undetected 6 mos after end of treatment). The 75-85% SVR is for genotype 2 & 3. Without any fibrosis, and the fact that treatment

can make your PBC worse, I think you should forego treatment. Having HCV for so long with no liver damage, the chances of progression of the HCV at this point is quite low. Do get that second opinion just to confirm. The reasons people choose to do therapy are as varied as the number of people who have the disease. Some genotype 1's have lots of damage. Some can't stand the thought of living with a virus in their bodies. Genotype should not be a reason to forego tretment. The amount of damage may be a good reason to wait.gingertumeric <kswift@...> wrote: Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't

treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger Find Great Deals on Holiday Gifts at I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

[Guest guest]

Janet, I would love to see this research. I have just come back from AASLD and the research and workshops I attended said that SVR for genotype 1 is between 40-50%. And that is usually for people who are handpicked in the trials. So if you have something that says treatment for genotype 1 is 75%, I'd love to have that treatment. DDjanet <doc_jade@...> wrote: No Delores, The new findings is that genotype 1 has increased. This is the latest findings. I will find that information out for you. Or get Liz to find it, as she is our resident researcher now. That is why I decided to re-treat. When my doctor and I decided to re-treat is because we had both read and studied the new information. Don't want to argue or anything but that is the info that I had. Love JanetDelores DelRio <dramamyqueen@...> wrote: Your doctor is absolutely correct on the SVR (sustained viral response=viral load undetected 6 mos after end of treatment). The 75-85% SVR is for genotype 2 & 3. Without any fibrosis, and the fact that treatment can make your PBC worse, I think you should forego treatment. Having HCV for so long with no liver damage, the chances of progression of the HCV at this point is quite low. Do get that second opinion just to confirm. The reasons people choose to do therapy are as varied as the number of people who have the disease. Some genotype 1's have lots of damage. Some can't stand the thought of living

with a virus in their bodies. Genotype should not be a reason to forego tretment. The amount of damage may be a good reason to wait.gingertumeric <kswift@...> wrote: Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or

fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger Find Great Deals on Holiday Gifts at I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

Find Great Deals on Holiday Gifts at

[Guest guest]

Janet, Here are the results of the largest(over 5000 patients) study

ever done on intention to treat in hepatitis patients. It is called

the WIN-R Study and was presented at AASLD. I certainly don't want

to argue with you but it is wrong to lead people to believe that

there is an SVR of 75% for genotype 1's. It just isn't true

unfortunately. Here's the discussion pertaining to geno 1 & SVR:

Nonetheless, the WIN-R study showed significantly better outcomes

for the weight-based combination regimen as compared to the flat-

dosed ribavirin regimen, including:

Significantly higher SVR overall (44.3 percent vs. 40.6 percent,

p=0.01, ITT) and for patients with genotype 1 (34 percent vs. 29

percent, p=0.004, ITT). These SVR rates are consistent with those

seen in the U.S. cohorts of the earlier pivotal studies for the two

approved peginterferon combination therapies

The other seminar I sat it on (POWeR study) showed these results:

Geno 1 = 47.1%

Geno 2 = 85.5%

Geno 3 = 78.8%

And remember that both these studies used high dose ribavirin. So, I

don't know where you are getting your figures but they are incorrect.

DD

> Hi,

> I have Hep C and PBC, an autoimmune liver disease where the immune

> system attacks the bile ducts of the liver. Although I suspect

I've

> had Hep C for over 34 years, I have just been diagnosed. I was

told

> by my Hepatologist that he wouldn't treat it because of the only

40%

> success rate with treating genotype 1 and treatment would probably

> worsen my other liver disease - which he believes is more of a

> concern according to the biopsy.

>

> He said why go through 48 weeks of hell, to probably not cure the

> Hep and worsen the PBC. Yet I read on here so many folks who are

> going through treatment, up to 4 times. My biopsy shows no

cirrhosis

> or fibrosis yet. So my question is should I get a second opinion?

> Also are people (with type 1) going through treatment because they

> are in later stages and those in early stages are waiting till a

> better option comes available?

>

> Also what is SVR? eg. " In one study the SVR rate

> among African-American nonresponders was less than 6%. " It is

> through out that and other articles, not sure what it means.

> Thanks very much in advance

> Ginger

>

>

>

>

>

>

>

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

>

> Find Great Deals on Holiday Gifts at

>

>

>

>

> I am a rock, I am island...and a rock feels no pain, and a

island never cries...- Simon

>

>

> It's a pleasure having you join in our conversations. We hope you

have found the support you need with us.

>

> If you are using email for your posts, for easy access to our

group, just click the link--

Hepatitis C/

>

> Happy Posting

>

>

>

>

[Guest guest]

I am not trying to mislead anyone, I just know from the data that my doctor gave me. The fact is that I decided to treat again because of the data that my doctor gave me. We are not all experts here. And I don't claim to be one. But I will find the data to back up what I am saying. Going to call my doctors nurse right now. janet dramamyqueen <dramamyqueen@...> wrote: Janet, Here are the results of the largest(over 5000 patients) study ever done on intention to treat in hepatitis patients. It is called the WIN-R Study and was presented at AASLD. I certainly don't want to argue with you but it is wrong to lead people to believe that there is an SVR

of 75% for genotype 1's. It just isn't true unfortunately. Here's the discussion pertaining to geno 1 & SVR:Nonetheless, the WIN-R study showed significantly better outcomes for the weight-based combination regimen as compared to the flat-dosed ribavirin regimen, including:Significantly higher SVR overall (44.3 percent vs. 40.6 percent, p=0.01, ITT) and for patients with genotype 1 (34 percent vs. 29 percent, p=0.004, ITT). These SVR rates are consistent with those seen in the U.S. cohorts of the earlier pivotal studies for the two approved peginterferon combination therapiesThe other seminar I sat it on (POWeR study) showed these results:Geno 1 = 47.1%Geno 2 = 85.5%Geno 3 = 78.8%And remember that both these studies used high dose ribavirin. So, I don't know where you are getting your figures but they are incorrect.DD> Hi,> I have Hep C and PBC, an autoimmune liver disease where the immune > system attacks the bile ducts of the liver. Although I suspect I've > had Hep C for over 34 years, I have just been diagnosed. I was told > by my Hepatologist that he wouldn't treat it because of the only 40% > success rate with treating genotype 1 and treatment would probably > worsen my other liver disease - which he believes is more of a > concern according to the biopsy.> > He said why go through 48 weeks of hell, to probably not cure the > Hep and worsen the PBC. Yet I read on here so many folks who are > going through treatment, up to 4 times. My biopsy shows no cirrhosis > or fibrosis yet. So my question is should I get a second opinion? > Also are people (with type 1) going through

treatment because they > are in later stages and those in early stages are waiting till a > better option comes available? > > Also what is SVR? eg. "In one study the SVR rate > among African-American nonresponders was less than 6%." It is > through out that and other articles, not sure what it means.> Thanks very much in advance> Ginger> > > > > > > > ---------------------------------> > Find Great Deals on Holiday Gifts at > > > > > I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon> > > It's a pleasure having you join in our conversations. We hope you have found the support you need with us. > > If you are

using email for your posts, for easy access to our group, just click the link-- Hepatitis C/> > Happy Posting > > > >

[Guest guest]

Hi Ginger My Gastro told me the same thing because I was geno1a, and stage 3-4 with early cirrhosis... he told me I had less than 15% chance of even responding to treatment,, well I DID respond, and I am not coming up on my 3 year PCR,, was still undetectible at year 2.. treatment was NOT easy, but doable.. so much for his advice.... but not everyone will respond as I did,, but I WOULD deffinately get a second opinion.. IF IT WERE ME, I WOULD email dr ben cecil and give him all the info about yourself,, and see what he says... You might be right that the treatment might make your PBC worse, they thought I had that just a couple of months ago but found out I did NOT have it,, anyway,, here is dr cecils email addrress,, and I would certainly email him and put URGENT in the subject line and ask him to email you an answer,, I did that and he answered me every time I emailed him..Dr. Ben Cecil [Edit] bdceci01@... . good luck and let us know jax gingertumeric <kswift@...> wrote: Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34

years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in

advanceGinger Jackie

[Guest guest]

Compared to Interferon Alfa-2b/Ribavirin Combination Therapy, Consensus Interferon Monotherapy Leads to a Higher Response Rate in a Shorter Time and a Lower Relapse Prevalence in Patients with Relapsing HCV Infection Management of HCV infection and related liver disease with treatment currently available leads to a sustained virological response in 20% of patients using interferon (IFN)-alfa monotherapy and approximately 40-45% in those on combination therapy with ribavirin.

The aim of the present investigation was to compare the effect of consensus interferon alphacon-1 (C-IFN)[brand name Infergen], and IFN-alpha 2b [brand name Intron A] plus ribavirin, in patients relapsing after treatment with interferon alone.

A total of 112 randomised patients with relapsing HCV infection (M/F=53/59), were treated for 24 weeks with:

(A) IFN-alpha 2b starting with 5/6MU/day till negativity of HCV-RNA followed by 3MU every other day, plus ribavirin 15mg/kg/day (n=34);

( C-IFN 9microg/day (n=40); and

© Ursodeoxycholic acid (UDCA; sodium salt) 450mg/day (n=37).

At the end of treatment, patients were observed at follow-up for 24 weeks.

Results

Clearance of HCV-RNA was achieved by the end of treatment in 23 patients (68%) in Group A and 21 also showed a biochemical response with normal ALT; in Group B, 33 patients (82%) had both a virological and a biochemical response; in Group C, one patient cleared HCV-RNA.

Consensus Interferon (Infergen) and Ribavirin in Nonresponders to Prior Therapy with Either Standard Interferon Alfa and Ribavirin or Pegylated Interferon and Ribavirin

Currently, there are no FDA-approved treatment options for individuals who fail to achieve a sustained virological response (SVR) to the standard of care—peginterferon plus ribavirin combination therapy. In the present review, investigators at 3 midwestern medical centers describe their experience using consensus interferon (CIFN) (Infergen) [aka interferon alfacon-1] plus ribavirin (RBV) in nonresponders (NR) to peginterferon + ribavirin

All patients were treated initially with IFN alfa-2a (Pegasys) monotherapy or Peg IFN + RBV. Those who failed to achieve undetectable HCV RNA were classified as NR and were then retreated with CIFN + weight-based RBV (800 mg-1200 mg/day) for at least 48 weeks.

Pretreatment liver biopsy, HCV genotype, viral load and various demographic information were collected for all subjects. Patients on CIFN + RBV retreatment were allowed to use growth factors to continue with their treatment on an as needed basis.

All patients received CIFN at a starting dose of 15 mcg/daily with weight-based RBV. Doses were adjusted as necessary for hematological side effects.

Results

79 patients were screened and 76 patients were treated with CIFN and RBV (65% Caucasian, 16% African American, 4% Hispanic, 15% other);

49 male and 27 female; age ranged from 20-76 years (Mean: 61 (80%) had HCV genotype 1;

36 (47%) had Metavir fibrosis F3/F4.

At the end of treatment (week 48), 55 (72%) patients were HCV RNA negative.

At week 72, 38 (50%) achieved an SVR.

One patient on treatment underwent liver transplantation and stopped treatment. At that time, his viral load had dropped to 1,830 copies/mL.

Table

Week 48 (end of treatment)

HCV RNA negative

55 (72%)

Re: To treat or not to treat

No Delores,

The new findings is that genotype 1 has increased. This is the latest findings. I will find that information out for you. Or get Liz to find it, as she is our resident researcher now.

That is why I decided to re-treat. When my doctor and I decided to re-treat is because we had both read and studied the new information.

Don't want to argue or anything but that is the info that I had.

Love

JanetDelores DelRio <dramamyqueen@...> wrote:

Your doctor is absolutely correct on the SVR (sustained viral response=viral load undetected 6 mos after end of treatment). The 75-85% SVR is for genotype 2 & 3. Without any fibrosis, and the fact that treatment can make your PBC worse, I think you should forego treatment. Having HCV for so long with no liver damage, the chances of progression of the HCV at this point is quite low. Do get that second opinion just to confirm.

The reasons people choose to do therapy are as varied as the number of people who have the disease. Some genotype 1's have lots of damage. Some can't stand the thought of living with a virus in their bodies. Genotype should not be a reason to forego tretment. The amount of damage may be a good reason to wait.gingertumeric <kswift@...> wrote:

Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger

Find Great Deals on Holiday Gifts at

I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

[Guest guest]

Delores , here is the treatment regime I am currently on . And this article is from the AASLD , it is not peg/riba but the infergen treatment and it has 72% svr . My doc was there in San Fransisco he was one of the hosts .

Consensus Interferon (Infergen) and Ribavirin in Nonresponders to Prior Therapy with Either Standard Interferon Alfa and Ribavirin or Pegylated Interferon and Ribavirin

Currently, there are no FDA-approved treatment options for individuals who fail to achieve a sustained virological response (SVR) to the standard of care—peginterferon plus ribavirin combination therapy. In the present review, investigators at 3 midwestern medical centers describe their experience using consensus interferon (CIFN) (Infergen) [aka interferon alfacon-1] plus ribavirin (RBV) in nonresponders (NR) to peginterferon + ribavirin

All patients were treated initially with IFN alfa-2a (Pegasys) monotherapy or Peg IFN + RBV. Those who failed to achieve undetectable HCV RNA were classified as NR and were then retreated with CIFN + weight-based RBV (800 mg-1200 mg/day) for at least 48 weeks.

Pretreatment liver biopsy, HCV genotype, viral load and various demographic information were collected for all subjects. Patients on CIFN + RBV retreatment were allowed to use growth factors to continue with their treatment on an as needed basis.

All patients received CIFN at a starting dose of 15 mcg/daily with weight-based RBV. Doses were adjusted as necessary for hematological side effects.

Results

79 patients were screened and 76 patients were treated with CIFN and RBV (65% Caucasian, 16% African American, 4% Hispanic, 15% other);

49 male and 27 female; age ranged from 20-76 years (Mean: 61 (80%) had HCV genotype 1;

36 (47%) had Metavir fibrosis F3/F4.

At the end of treatment (week 48), 55 (72%) patients were HCV RNA negative.

At week 72, 38 (50%) achieved an SVR.

One patient on treatment underwent liver transplantation and stopped treatment. At that time, his viral load had dropped to 1,830 copies/mL.

Table

Week 48 (end of treatment)

HCV RNA negative

55 (72%)

Re: To treat or not to treat

Janet, I would love to see this research. I have just come back from AASLD and the research and workshops I attended said that SVR for genotype 1 is between 40-50%. And that is usually for people who are handpicked in the trials.

So if you have something that says treatment for genotype 1 is 75%, I'd love to have that treatment.

DDjanet <doc_jade@...> wrote:

No Delores,

The new findings is that genotype 1 has increased. This is the latest findings. I will find that information out for you. Or get Liz to find it, as she is our resident researcher now.

That is why I decided to re-treat. When my doctor and I decided to re-treat is because we had both read and studied the new information.

Don't want to argue or anything but that is the info that I had.

Love

JanetDelores DelRio <dramamyqueen@...> wrote:

Your doctor is absolutely correct on the SVR (sustained viral response=viral load undetected 6 mos after end of treatment). The 75-85% SVR is for genotype 2 & 3. Without any fibrosis, and the fact that treatment can make your PBC worse, I think you should forego treatment. Having HCV for so long with no liver damage, the chances of progression of the HCV at this point is quite low. Do get that second opinion just to confirm.

The reasons people choose to do therapy are as varied as the number of people who have the disease. Some genotype 1's have lots of damage. Some can't stand the thought of living with a virus in their bodies. Genotype should not be a reason to forego tretment. The amount of damage may be a good reason to wait.gingertumeric <kswift@...> wrote:

Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger

Find Great Deals on Holiday Gifts at

I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

Find Great Deals on Holiday Gifts at

[Guest guest]

I have posted a couple of clinical results from the infergen trials which clearly show a 72% response rate and I can also post results from the protease inhibitor clinicals if needed . LOL have a great night sweety .......liz

Re: Re: To treat or not to treat

I am not trying to mislead anyone, I just know from the data that my doctor gave me.

The fact is that I decided to treat again because of the data that my doctor gave me.

We are not all experts here. And I don't claim to be one. But I will find the data to back up what I am saying. Going to call my doctors nurse right now.

janet

dramamyqueen <dramamyqueen@...> wrote:

Janet, Here are the results of the largest(over 5000 patients) study ever done on intention to treat in hepatitis patients. It is called the WIN-R Study and was presented at AASLD. I certainly don't want to argue with you but it is wrong to lead people to believe that there is an SVR of 75% for genotype 1's. It just isn't true unfortunately. Here's the discussion pertaining to geno 1 & SVR:Nonetheless, the WIN-R study showed significantly better outcomes for the weight-based combination regimen as compared to the flat-dosed ribavirin regimen, including:Significantly higher SVR overall (44.3 percent vs. 40.6 percent, p=0.01, ITT) and for patients with genotype 1 (34 percent vs. 29 percent, p=0.004, ITT). These SVR rates are consistent with those seen in the U.S. cohorts of the earlier pivotal studies for the two approved peginterferon combination therapiesThe other seminar I sat it on (POWeR study) showed these results:Geno 1 = 47.1%Geno 2 = 85.5%Geno 3 = 78.8%And remember that both these studies used high dose ribavirin. So, I don't know where you are getting your figures but they are incorrect.DD> Hi,> I have Hep C and PBC, an autoimmune liver disease where the immune > system attacks the bile ducts of the liver. Although I suspect I've > had Hep C for over 34 years, I have just been diagnosed. I was told > by my Hepatologist that he wouldn't treat it because of the only 40% > success rate with treating genotype 1 and treatment would probably > worsen my other liver disease - which he believes is more of a > concern according to the biopsy.> > He said why go through 48 weeks of hell, to probably not cure the > Hep and worsen the PBC. Yet I read on here so many folks who are > going through treatment, up to 4 times. My biopsy shows no cirrhosis > or fibrosis yet. So my question is should I get a second opinion? > Also are people (with type 1) going through treatment because they > are in later stages and those in early stages are waiting till a > better option comes available? > > Also what is SVR? eg. "In one study the SVR rate > among African-American nonresponders was less than 6%." It is > through out that and other articles, not sure what it means.> Thanks very much in advance> Ginger> > > > > > > > ---------------------------------> > Find Great Deals on Holiday Gifts at > > > > > I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon> > > It's a pleasure having you join in our conversations. We hope you have found the support you need with us. > > If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/> > Happy Posting > > > >

[Guest guest]

, We were not talking about an ETR. We are talking about SVR. Here is what you posted about SVR. "At week 72, 38 (50%) achieved an SVR. Delores elizabethnv1 <elizabethnv1@...> wrote: Delores , here is the treatment regime I am currently on . And this article is from the AASLD , it is not peg/riba but the infergen treatment and it has 72% svr . My doc was there in San Fransisco he was one of the hosts . Consensus Interferon (Infergen) and Ribavirin in Nonresponders to Prior Therapy with Either Standard Interferon Alfa and Ribavirin or Pegylated Interferon and Ribavirin Currently, there are no FDA-approved treatment options for individuals who fail to achieve a sustained virological response (SVR) to the standard of care—peginterferon plus ribavirin combination therapy. In the

present review, investigators at 3 midwestern medical centers describe their experience using consensus interferon (CIFN) (Infergen) [aka interferon alfacon-1] plus ribavirin (RBV) in nonresponders (NR) to peginterferon + ribavirin All patients were treated initially with IFN alfa-2a

(Pegasys) monotherapy or Peg IFN + RBV. Those who failed to achieve undetectable HCV RNA were classified as NR and were then retreated with CIFN + weight-based RBV (800 mg-1200 mg/day) for at least 48 weeks. Pretreatment liver

biopsy, HCV genotype, viral load and various demographic information were collected for all subjects. Patients on CIFN + RBV retreatment were allowed to use growth factors to continue with their treatment on an as needed basis. All patients received CIFN at a starting dose of 15 mcg/daily with weight-based RBV. Doses were adjusted as necessary for hematological side

effects. Results 79 patients were screened and 76 patients were treated with CIFN and RBV (65% Caucasian, 16% African American, 4% Hispanic, 15% other); 49 male and 27 female; age ranged from 20-76 years (Mean: 61 (80%) had HCV genotype 1; 36 (47%) had Metavir fibrosis F3/F4. At the end of treatment (week 48), 55 (72%) patients were HCV RNA negative. At week 72, 38 (50%) achieved an SVR. One patient on treatment underwent liver transplantation and stopped treatment. At that time, his viral load had dropped to 1,830 copies/mL. Table Week 48 (end of treatment) HCV RNA negative 55 (72%) Re: To treat or not to treat Janet, I would love to see

this research. I have just come back from AASLD and the research and workshops I attended said that SVR for genotype 1 is between 40-50%. And that is usually for people who are handpicked in the trials. So if you have something that says treatment for genotype 1 is 75%, I'd love to have that treatment. DDjanet <doc_jade@...> wrote: No Delores, The new findings is that genotype 1 has increased. This is the latest findings. I will find that information out for you. Or get Liz to find it, as she is our resident researcher now. That is why I decided to re-treat. When my doctor and I decided to re-treat is because we had both read and studied the new information. Don't want to argue or anything but that is the info that I had. Love JanetDelores DelRio <dramamyqueen@...> wrote: Your doctor is absolutely correct on the SVR (sustained viral response=viral load undetected 6 mos after end of treatment). The 75-85% SVR is for genotype 2 & 3. Without any fibrosis, and the fact that treatment can make your PBC worse, I think you should forego treatment. Having HCV for so long with no liver damage, the chances of progression of the HCV at this point is quite low. Do get that second opinion just to confirm. The reasons people choose to do therapy are as varied as the number of people who have the disease. Some genotype 1's have lots of damage. Some can't stand the thought of living

with a virus in their bodies. Genotype should not be a reason to forego tretment. The amount of damage may be a good reason to wait.gingertumeric <kswift@...> wrote: Hi,I have Hep C and PBC, an autoimmune liver disease where the immune system attacks the bile ducts of the liver. Although I suspect I've had Hep C for over 34 years, I have just been diagnosed. I was told by my Hepatologist that he wouldn't treat it because of the only 40% success rate with treating genotype 1 and treatment would probably worsen my other liver disease - which he believes is more of a concern according to the biopsy.He said why go through 48 weeks of hell, to probably not cure the Hep and worsen the PBC. Yet I read on here so many folks who are going through treatment, up to 4 times. My biopsy shows no cirrhosis or

fibrosis yet. So my question is should I get a second opinion? Also are people (with type 1) going through treatment because they are in later stages and those in early stages are waiting till a better option comes available? Also what is SVR? eg. "In one study the SVR rate among African-American nonresponders was less than 6%." It is through out that and other articles, not sure what it means.Thanks very much in advanceGinger Find Great Deals on Holiday Gifts at I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Find Great Deals on Holiday Gifts at

Find Great Deals on Holiday Gifts at

[Guest guest]

Quite frankly I have no ideal where this is coming from but .............if ya look to the bottom of the page it shows a 72% SVR not ETR . Besides with the fast tracking by the FDA of Protease inhibitors the SVR rates are going to be even higher . Why are u insistent on giving treatment a bleak outcome , are you one of those people who dont think anyone should treat ? Making someone believe that treatment is hopeless is not a very nice thing to do , having a positive attitude is essential for those that are infected .

Re: To treat or not to treat

, We were not talking about an ETR. We are talking about SVR. Here is what you posted about SVR.

[Guest guest]

Hi Liz,

Actually, the article you quoted says at end of

treatment at 48 weeks was 72%. However, after week 72,

50% were still SVR. Here it is, from your post:

# At the end of treatment (week 48), 55 (72%) patients

were HCV RNA negative.

# At week 72, 38 (50%) achieved an SVR.

So it is a 50%, 24 weeks after treatment. (48 + 24 =

72)

Take care,

Jane

--- elizabethnv1 <elizabethnv1@...> wrote:

> Quite frankly I have no ideal where this is coming

> from but .............if ya look to the bottom of

> the page it shows a 72% SVR not ETR . Besides with

> the fast tracking by the FDA of Protease inhibitors

> the SVR rates are going to be even higher . Why are

> u insistent on giving treatment a bleak outcome ,

> are you one of those people who dont think anyone

> should treat ? Making someone believe that treatment

> is hopeless is not a very nice thing to do , having

> a positive attitude is essential for those that are

> infected .

> Re: To treat or not

> to treat

>

>

> , We were not talking about an ETR. We

> are talking about SVR. Here is what you posted about

> SVR.

>

>

>

>

[Guest guest]

Actually , I have treated 5 times and never reached undetected. I am very pro treatment. I don't like when people are told they have a better chance than they really do. Hopefully you are right and the protease or polymerase inhibitors will raise those SVR's for all comers. But, we've been disappointed before such as with BILN. My fingers are crossed just as hard as yours that there will be high SVR's for everyone. But, again, it is not wise to count your chickens before they hatch. And doncha really think that if we were "curing" 75% of people there would be lots more "noise" about it. It just isn't happening yet. The 72% is a misprint. It happens. As for the person posting that her doctor said treatment can effect her PBC....we've seen that happen too. PBC is a much more serious disease than HCV is for most people....especially those who have it for decades and still have

almost no damage. DDelizabethnv1 <elizabethnv1@...> wrote: Quite frankly I have no ideal where this is coming from but .............if ya look to the bottom of the page it shows a 72% SVR not ETR . Besides with the fast tracking by the FDA of Protease inhibitors the SVR rates are going to be even higher . Why are u insistent on giving treatment a bleak outcome , are you one of those people who dont think anyone should treat ? Making someone believe that treatment is hopeless is not a very nice thing to do , having a positive attitude is essential for those that are infected . Re: To treat or not to treat , We were not talking about an ETR. We are talking about SVR. Here is what you posted about SVR. It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/Happy Posting __________________________________________________

[Guest guest]

P.S.

Read it again, the last thing you posted says 50% at end of 72

weeks.

>

> Quite frankly I have no ideal where this is coming from

but .............if ya look to the bottom of the page it shows a 72%

SVR not ETR . Besides with the fast tracking by the FDA of Protease

inhibitors the SVR rates are going to be even higher . Why are u

insistent on giving treatment a bleak outcome , are you one of

those people who dont think anyone should treat ? Making someone

believe that treatment is hopeless is not a very nice thing to do ,

having a positive attitude is essential for those that are

infected .

> Re: To treat or not to treat

>

>

> , We were not talking about an ETR. We are talking

about SVR. Here is what you posted about SVR.

>

[Guest guest]

This one for infergen yes , but I can come up with other % for svr with other newer meds . Ifergen is for nonresponders usually but I will see what other numbers I can come up with from the protease inhibitors . I like to keep a positive attitude, lol especially since I just started treatment for the 4th time .

Re: To treat or not> to treat> > > , We were not talking about an ETR. We> are talking about SVR. Here is what you posted about> SVR.> > > >

[Guest guest]

Yeah baby!! YOU ARE gonna make it this time!!!! love you meelizabethnv1 <elizabethnv1@...> wrote: This one for infergen yes , but I can come up with other % for svr with other newer meds . Ifergen is for nonresponders usually but I will see what other numbers I can come up with from the protease inhibitors . I like to keep a positive attitude, lol especially since I just started treatment for the 4th time . Re: To treat or not> to treat> > > , We were not talking about an ETR. We> are talking about

SVR. Here is what you posted about> SVR.> > > > Jackie

[Guest guest]

True , true BILN was a dissapointment but at least it didnt make it past phase I clinicals . I like you dont count my chickens before the dang eggs hatch and I am always researching and working with researchers . I personally think anyone who has acheived SVR is at risk for the rest of their lives until there is an absolute irradication of the virus from the body . I keep up on current news to help educate all that will listen to me , lol

Re: To treat or not to treat

, We were not talking about an ETR. We are talking about SVR. Here is what you posted about SVR.

It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/Happy Posting

__________________________________________________

[Guest guest]

Ech this is just one of the hundreds of papers I have , I will find some results with the protease inhibitors and see what there SVR % are

Re: To treat or not to treat> > > , We were not talking about an ETR. We are talking about SVR. Here is what you posted about SVR.>

[Guest guest]

LOL The power of positive thinking , how can I not make it this time rofl

Re: To treat or not> to treat> > > , We were not talking about an ETR. We> are talking about SVR. Here is what you posted about> SVR.> > > > Jackie

[Guest guest]

lol,, Ginger Dr Ben Cecil is just about the BEST Hep doc in the USA. He lives and works in Lexington Kentucky but I think he has another office in Detroit.. He is the absolute BEST in the field of hep C tx.. so you have find his website at http://www.hepatitisdoctor.com you are right,, its a very personal decision as far as treatment.. and your PBC is a very big deal, I know.. but I wouldnt rule anything out until you talk with him,, Let us know what he says,, jaxgingertumeric <kswift@...> wrote: OK, then, that was as clear as mud!LOL, anyway thanks for your input - what I got out of that was there is no clear answer on whether to treat or not and it is definitely an individual decision. My PBC is a big

concern and therefore I need to consider that heavily.I will get a second opinion as well. Who is Dr. Ben Cecil? I will write him, but it would be nice to know who he is and where he works out of, what are his specialties? I seem to know of all the big PBC docs but not the HCV ones.Thanks to all for your input. Ginger Jackie

[Guest guest]

I found this info on medicinenet. I think. I've tried to copy it

twice and keep losing the page, ahaaa this time I copied it to word,

but I can't remember the name of the site, but it was just full of

very good info. I thought I'd copy this part re our to treat or not

to treat debate. Ok here it is: - I hope it isn't too long folks -

it is good though.

Who should receive antiviral therapy for hepatitis C virus?

Any individual with chronic hepatitis C infection is a potential

candidate for antiviral therapy. However, given our understanding of

the natural history of chronic hepatitis C virus infection and the

effectiveness and side effects of current antiviral therapy, the NIH

Consensus Development Conference recommends treatment for those

patients who are at the greatest risk of developing cirrhosis. Such

individuals have all of the following characteristics:

· Persistent ALT elevation

· Detectable hepatitis C virus RNA

· Evidence of fibrosis (scarring) on liver biopsy

· Evidence of at least moderate inflammation and liver cell

injury (necrosis) on liver biopsy

It is less clear whether patients who meet some but not all of these

criteria should be treated. Accordingly, the NIH consensus advocates

that patients who do not fit into all of the recommended criteria be

treated in the setting of research protocols. The consensus called

for participation in the research protocols so that knowledge can be

gained from the experience of treating these patients. Such patients

include those:

· With persistently normal liver tests and mild inflammation

on liver biopsy

· With compensated cirrhosis (no signs of liver failure, such

as jaundice, ascites, encephalopathy, or bleeding)

· Below the age of 18 or over 65 years

· Who are co-infected with HIV

Patients with decompensated cirrhosis (signs of chronic liver

failure) should be treated only in research settings. Moreover, they

should be closely monitored, preferably at a facility with a liver

transplant program.

Individuals who should not be treated with antiviral therapy include

those who are actively using illicit drugs or alcohol, have major

psychiatric depression, low blood counts, untreated thyroid gland

disease, autoimmune disease, have other serious medical conditions

(e.g., symptomatic heart disease, uncontrolled hypertension, or

diabetes), are pregnant, or are recipients of solid organ (e.g.,

kidney) transplant.

Fundamentally, the decision regarding antiviral therapy in chronic

hepatitis C patients should be tailored to the individual with

careful consideration of the risks and benefits.

Ginger

[Guest guest]

Ginger,

Don't worry about the HCV, take the best care of your liver that you can.

The PBC is your bigger and worse threat. At this time any chomo treatment

for HCV will adversely affect your PBC.

Be well, and get several opinions.

Sally

To treat or not to treat

OK, then, that was as clear as mud!LOL, anyway thanks for your input -

what I got out of that was there is no clear answer on whether to treat

or not and it is definitely an individual decision. My PBC is a big

concern and therefore I need to consider that heavily.

I will get a second opinion as well. Who is Dr. Ben Cecil? I will write

him, but it would be nice to know who he is and where he works out of,

what are his specialties? I seem to know of all the big PBC docs but

not the HCV ones.

Thanks to all for your input.

Ginger

It's a pleasure having you join in our conversations. We hope you have found

the support you need with us.

If you are using email for your posts, for easy access to our group, just

click the link-- Hepatitis C/

Happy Posting

[Guest guest]

Ok, my little 2cents worth. I did Infergen in 2000, or just before S-P got

the " bundle " approved. At least I started before the approval. I wanted the

Riba, but couldn't get it stateside, so I got Mexican Riba imported through

a " compassionate " thingy. The AIDS group in NYC handled it for me. They were

wonderful.

I went non-detectable on the Mexican Riba and Infergen combo before 8 weeks,

which was my first post-treatment quantitative count. I stayed

non-detectable until I had to switch from the Mexican Riba to some S-P

leftovers that some folks on the S-P combo weren't able to use. As soon as I

went to (what I consider inferior) S-P riba the virus count came back with a

vengance. And the fatigue and other sides weren't really that bad until I

went to the S-P product.

I agree that the Infergen product has been underused. I heartily support its

use with a quality Riba. I don't EVER want to use an S-P product again. I'm

afraid of them.

I can't compare the Infergen to Intron A as I never did a course of Intron

A. I was on a trial for the Intron combo, but was only on 4 weeks and

dropped out. The Riba rage was just unbearable. I wanted to commit murder

and mayhem on close family members.

Sally

Re: To treat or not to treat

Ya know, Liz, it REALLY ticks me off that infergen

wasn't used more from the beginning. It was out

there. I think a lot of people who did monotherapy in

early 90's did infergen. ( FYI-I think Dr Cecil

recommended massive doses when first starting

treatment)

Then frikking Shearing-Plough came out with the

" bundle " of Intron A and ribaviron. No one else could

use the riba, so I think infergen got put out to

pasture, so to speak. And, I'm thinking infergen was

easier to tolerate, but not sure.

I did the old 3xwk shot and riba; I would've GLADLY

taken DAILY shots if I didn't have to take the stupid

riba. I looked forward to shot days, as I felt better

than days with just riba. In fact, I used the pen,

and there was enough juice that I actually did every

other day...only one day without a shot...not the

normal 2.

Do I sound bitter? hehehe.

PS - to all owners and moderators - it was very

difficult writing the word " frikking " but you get

enough grief from ppl when a bad word is used! LOL

Take care,

Jane

--- elizabethnv1 <elizabethnv1@...> wrote:

> This one for infergen yes , but I can come up with

> other % for svr with other newer meds . Ifergen is

> for nonresponders usually but I will see what other

> numbers I can come up with from the protease

> inhibitors . I like to keep a positive attitude, lol especially since

> I just started treatment for the 4th time .

> Re: To treat or

> not

> > to treat

> >

> >

> > , We were not talking about an ETR.

> We

> > are talking about SVR. Here is what you posted

> about

> > SVR.

> >

> >

> >

> >

>

>

>

> It's a pleasure having you join in our

> conversations. We hope you have found the support

> you need with us.

>

> If you are using email for your posts, for easy

> access to our group, just click the link--

> Hepatitis C/

>

> Happy Posting

>

>

>

>

----------------------------------------------------------------------------

--

> ! GROUPS LINKS

>

> a.. Visit your group " Hepatitis C " on

> the web.

>

> b..