Aa
Commentary from Dr Koretz
What is your opinion?
“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.
http://www.nytimes.com/2010/07/22/business/22hepatitis.html
“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.
http://www.nytimes.com/2010/07/22/business/22hepatitis.html
While I don't agree with Dr. Koretz, neither do I agree with the hype coming from pharmas and the medical profession. Do they really have the best interests of patients at heart, or are they just selling meds?
The worst thing is that you can no longer trust an MD to give you a balanced, reasonable opinion. They are all in the pockets of the pharmas and the insurance companies. Maybe some people with CHC shouldn't treat or should wait. But where is the MD who will tell them this?
We have only each other.
Mike
The worst thing is that you can no longer trust an MD to give you a balanced, reasonable opinion. They are all in the pockets of the pharmas and the insurance companies. Maybe some people with CHC shouldn't treat or should wait. But where is the MD who will tell them this?
We have only each other.
Mike
Thank you for sharing your story. I understand and I am so sorry. This happened to many people who had little to no damage yet were told to treat asap with the interferon and riba. They were told it would be like having the flu. They were told they would get used to being sick. HA I would love it if every doctor who ever said that had to take the tx for 48 or even 72 weeks before recommending this combo.
Sharing your story is important. The doctor who treated you was someone you you trusted, he let you down, or maybe he didn't even know how bad it would be.
For some people it wasn't. Everyone reacted differently to the interferon and riba.
Thank you
Dee
Sharing your story is important. The doctor who treated you was someone you you trusted, he let you down, or maybe he didn't even know how bad it would be.
For some people it wasn't. Everyone reacted differently to the interferon and riba.
Thank you
Dee
I'm with you ! I'm going to do what it takes to be well and deal with the rest later
Peace
Peace
The new drug regimens are not as harsh as the one you went through Linda
For me and for many others on this site, not treating means that we will continue to get worse from the cirrhosis caused by Hep C and all the other ways that the disease is affecting our bodies
So, even if the treatment is harsh, our alternative is death
For me and for many others on this site, not treating means that we will continue to get worse from the cirrhosis caused by Hep C and all the other ways that the disease is affecting our bodies
So, even if the treatment is harsh, our alternative is death
Yes that is what I was really trying to say. I understand this thread is 2 years long but felt the need to share what happened to me because my gastroenterolost was a personal friend who told me I was at a very high risk for getting liver cancer or cirrohis because of the years. I was told i would get flu like symptoms and that was about it as far as side effects went. I do not think I was given enough information and was very trusting of my doctor, who by the way doesn't speak to me any longer because I was the sickest person he had and I quit early. I recently had my colonoscopy done by another doctor in the same practice who says if I had been his patient he would not have recommended treat at that time and that curretn treatment is worse than what I did. All I am trying to say to anyone who stumbles upon this site as I did, learn everything you can about the treatment being purposed, especially if you only have the signs with no symptoms, before considering putting the toxic drugs used for treatment.
I agree with you Linda and what you say here is why I never did treatment until now. The thing is over the years the virus takes its toll and in me the manifestations have been peripheral neuropathy and bone/joint problems, and now, cirrhosis. In spite of my aversion to past treatments, I decided to go ahead with the sovaldi and olysio because if I don't get rid of the virus at this point then my future is more apt to be much bleaker than any side effects of treatment by far.
It seems like a good idea for those newly diagnosed with Hep C to watch how the new treatments go for a couple of years before jumping right in there. The fact is that the virus does take time to do much damage. I've had it for over 40 years and had no symptoms for probably 35 of those years. In a couple of years we will know so much more about what these drugs do to our bodies and there will be even newer and better drugs so that I think it would behoove one who has not had the virus long to take a wait and see approach.
It seems like a good idea for those newly diagnosed with Hep C to watch how the new treatments go for a couple of years before jumping right in there. The fact is that the virus does take time to do much damage. I've had it for over 40 years and had no symptoms for probably 35 of those years. In a couple of years we will know so much more about what these drugs do to our bodies and there will be even newer and better drugs so that I think it would behoove one who has not had the virus long to take a wait and see approach.
Pretty scary seeing this in the med field day in and day out. Most doctors know very little. Hep C is a FATAL disease if left untreated.
It's ignorant doctors like him that make this forum thrive. And Hat tip to BoceprevirGal for a great post above.
All boomers had to have the polio shot in the upper left arm upon entering first grade. I wonder how many got the virus from those dirty needles. It makes you think.
It's ignorant doctors like him that make this forum thrive. And Hat tip to BoceprevirGal for a great post above.
All boomers had to have the polio shot in the upper left arm upon entering first grade. I wonder how many got the virus from those dirty needles. It makes you think.
This thread is two years old.
The meds to treat the virus have changed
Hopefully what happened to you and many others will never happen again
There is more support here:
http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670
I have never posted a comment on anything, but after reading some of the comments I felt I had to shed some light on the damage of treating hep c
I began treatment in 2003 with the combination peg inerferon/riboviran for a 48 week series. Eight weeks into treatment I thought I had a sinus infection and was coughing clearng my throat constantly. I was treated with antibiotics. Did not help. From that day to this, I have never been the same.I still have constant nasal congestion, cough and clear every waking moment. My only relief came from hydrocone. While never abusing it, I did become dependent until it no longer worked for need to take more and more to get relief and had to stop. I have had 3 nasal surgeries, hiatal hernia surgery from coughing so much, nissan wrap surgery in case I had acid reflux, which I had already done many tests to the contrary, and been on more drugs than I can count. I stopped treatment after 40 weeks as I had been so sick I could no longer get out of bed. I was 49 years old when I started treament, and most importanly I think, was urged to do the treament based on signs, i.e. elevated live enzemys, and a 20 year probability of infection, 3 mild liver scaring biopsies. My only complaint over the years was fatigue. What I had then does not come close to the fatigue and other problems that has left me unable to work and have any productive quality of life. I have spent a week at the mayo clinic, seen doctors from Georgetown, UVA, Johns Hopkins. They all say they think my immune system was so compromised from treatment, that I can't be fixed. I am now 61 and have had the most miserable 11 years of my life. I have no life. I was extremely active, played tennis, gardened, lots of stuff, but I can no longer and have not been able to since my treatment began.I was told I would be "normal" 4-6 weeks post treament but that never happened.
I was PCR negative SVL negative at week 12, and am told well at least you don't have hep c anymore. While that might be true, I would give anything in this world to have never done the treatment because it destroyed my life.
This is my opinion, based on my experience, and hope anyone considering treatment based on signs but no symptons, read Dr Koretz Hep C treatment no benefits and possible harm, because it spoke directly to what happened to me. Doctors have gotten rich off this treatment, but if you have no symptons you should think long and hard before treatment.
I began treatment in 2003 with the combination peg inerferon/riboviran for a 48 week series. Eight weeks into treatment I thought I had a sinus infection and was coughing clearng my throat constantly. I was treated with antibiotics. Did not help. From that day to this, I have never been the same.I still have constant nasal congestion, cough and clear every waking moment. My only relief came from hydrocone. While never abusing it, I did become dependent until it no longer worked for need to take more and more to get relief and had to stop. I have had 3 nasal surgeries, hiatal hernia surgery from coughing so much, nissan wrap surgery in case I had acid reflux, which I had already done many tests to the contrary, and been on more drugs than I can count. I stopped treatment after 40 weeks as I had been so sick I could no longer get out of bed. I was 49 years old when I started treament, and most importanly I think, was urged to do the treament based on signs, i.e. elevated live enzemys, and a 20 year probability of infection, 3 mild liver scaring biopsies. My only complaint over the years was fatigue. What I had then does not come close to the fatigue and other problems that has left me unable to work and have any productive quality of life. I have spent a week at the mayo clinic, seen doctors from Georgetown, UVA, Johns Hopkins. They all say they think my immune system was so compromised from treatment, that I can't be fixed. I am now 61 and have had the most miserable 11 years of my life. I have no life. I was extremely active, played tennis, gardened, lots of stuff, but I can no longer and have not been able to since my treatment began.I was told I would be "normal" 4-6 weeks post treament but that never happened.
I was PCR negative SVL negative at week 12, and am told well at least you don't have hep c anymore. While that might be true, I would give anything in this world to have never done the treatment because it destroyed my life.
This is my opinion, based on my experience, and hope anyone considering treatment based on signs but no symptons, read Dr Koretz Hep C treatment no benefits and possible harm, because it spoke directly to what happened to me. Doctors have gotten rich off this treatment, but if you have no symptons you should think long and hard before treatment.
http://hepatitiscnewdrugs.blogspot.ca/
Studies analyzing post-SVR liver histology provide further support to the claim that HCV clearance in patients without cirrhosis has clinical benefits, indeed between 57 and 100% show improve inflammation when compared to pre-therapy histological findings and between 0 and 100% show a reduction in the semi-quantitative score of liver fibrosis, providing evidence that an SVR prevents the progression to cirrhosis [53].
A secondary aim of anti-HCV treatment is to prevent the extra-hepatic manifestations of the virus [54]. HCV is known to lead to the production of cryoglobulins through B-lymphocyte cell activation in roughly 40% of infected patients, with 20-30% of these patients developing the cryoglobulinemic syndrome characterized by purpura, arthralgias and weakness. In some cases cryoglobulinemia may lead to a more serious systemic vasculitis characterized by neurological and/or renal involvement [55].
HCV has also been shown to interfere with lipid and glucose metabolism leading to liver steatosis, development of insulin resistance, increased incidence of diabetes and carotid atherosclerosis [56-60]. HCV can also impair kidney function by immunemediated damage, determine cognitive dysfunction through central nervous system involvement, and activate B lymphocytes leading in some cases to the development of non-Hodgkin’s lymphoma [61-63]. Several lines of evidence show that an SVR is associated with improvement or prevention of many of these conditions (Table 4) [64-67].
Most importantly an SVR has been shown to be associated with reduced incidence of non-Hodgkin’s lymphoma in a large study in Japan where, during a 15 year follow-up period, none of the 1048 SVR patients developed lymphoma comparedto 2.56% of the 2161 patients with persistent infection, hence further strengthening the positive impact of an SVR in HCV patients.
All in all, even if no randomized controlled trial will ever demonstrate that an SVR improves liver related survival in HCV patients without cirrhosis, indirect evidence suggests this to be the case, supporting SVR as an excellent marker of efficacy in this subgroup of HCV
Studies analyzing post-SVR liver histology provide further support to the claim that HCV clearance in patients without cirrhosis has clinical benefits, indeed between 57 and 100% show improve inflammation when compared to pre-therapy histological findings and between 0 and 100% show a reduction in the semi-quantitative score of liver fibrosis, providing evidence that an SVR prevents the progression to cirrhosis [53].
A secondary aim of anti-HCV treatment is to prevent the extra-hepatic manifestations of the virus [54]. HCV is known to lead to the production of cryoglobulins through B-lymphocyte cell activation in roughly 40% of infected patients, with 20-30% of these patients developing the cryoglobulinemic syndrome characterized by purpura, arthralgias and weakness. In some cases cryoglobulinemia may lead to a more serious systemic vasculitis characterized by neurological and/or renal involvement [55].
HCV has also been shown to interfere with lipid and glucose metabolism leading to liver steatosis, development of insulin resistance, increased incidence of diabetes and carotid atherosclerosis [56-60]. HCV can also impair kidney function by immunemediated damage, determine cognitive dysfunction through central nervous system involvement, and activate B lymphocytes leading in some cases to the development of non-Hodgkin’s lymphoma [61-63]. Several lines of evidence show that an SVR is associated with improvement or prevention of many of these conditions (Table 4) [64-67].
Most importantly an SVR has been shown to be associated with reduced incidence of non-Hodgkin’s lymphoma in a large study in Japan where, during a 15 year follow-up period, none of the 1048 SVR patients developed lymphoma comparedto 2.56% of the 2161 patients with persistent infection, hence further strengthening the positive impact of an SVR in HCV patients.
All in all, even if no randomized controlled trial will ever demonstrate that an SVR improves liver related survival in HCV patients without cirrhosis, indirect evidence suggests this to be the case, supporting SVR as an excellent marker of efficacy in this subgroup of HCV
Well said, Orphanedhawk! My point exactly.
You and my husband are two of the fortunate ones who were able to get a liver transplant before you lost your lives. Had that not happened, my guess is my husband's "luck" would have run out at some point.
During our own ordeal, my sister heard from a friend she had not seen in a while that her sister had found out she had Hep C and cirrhosis and was on a liver transplant list in NJ. She told my sister that there were many people waiting and she didn't know when she would be getting her transplant. She said she also had other medical issues (but didn't go into detail). I emailed her and advised her to look into other transplant centers where there weren't as many people waiting and had a higher percentage of yearly transplants completed for patients with lower MELD scores (as we had done). She explained that she had other family obligations and would not be able to relocate to another state with her sister and there was no one else who could do it. A month later her sister was dead.
I guess she is one of 1-2% they are talking about. May she rest in peace.
Nan
You and my husband are two of the fortunate ones who were able to get a liver transplant before you lost your lives. Had that not happened, my guess is my husband's "luck" would have run out at some point.
During our own ordeal, my sister heard from a friend she had not seen in a while that her sister had found out she had Hep C and cirrhosis and was on a liver transplant list in NJ. She told my sister that there were many people waiting and she didn't know when she would be getting her transplant. She said she also had other medical issues (but didn't go into detail). I emailed her and advised her to look into other transplant centers where there weren't as many people waiting and had a higher percentage of yearly transplants completed for patients with lower MELD scores (as we had done). She explained that she had other family obligations and would not be able to relocate to another state with her sister and there was no one else who could do it. A month later her sister was dead.
I guess she is one of 1-2% they are talking about. May she rest in peace.
Nan
Your husband and I are both have lost our livers to hep C. If I remember correctly, Rambleon treated with little liver damage and landed up with long term side effects.
Our experiences differ affecting our views.
=================================
Good answer; excellent!!
If the DAA treatments get through trials to approval we will see very high cure rates and a lot of this will become a moot point.
The new treatments are effective, but they are tough.
willy
Our experiences differ affecting our views.
=================================
Good answer; excellent!!
If the DAA treatments get through trials to approval we will see very high cure rates and a lot of this will become a moot point.
The new treatments are effective, but they are tough.
willy
Figures can indeed be confusing.
One big thing left out is how many people don't die because they've had a liver transplant.Or people with cirrhosis who die of other causes, be they health related or not.
If a person with dies from liver cancer do they attribute that to their having hep C ?
The other thing not covered is the recent discovery of how many diseases people are more prone to because of having hep C.
If they have lymphoma because of having hep C, what do they claim was the cause of death ?
Hep C is now the number one cause for liver transplantation in the US and kills more people in the US than AIDS. This was not true just a few years ago. No doubt left undiagnosed and untreated, we will see more casualties of this virus.
The majority of sites I've seen claim 20% of those with hep C will develop cirrhosis.
The problem with all these figures is they are estimates as nobody knows how many people truly have hep C.
My personal belief is that whether or not to treat and when is a personal decision. Ideally a qualified doctor helps to guide us, providing us with the information to make an intelligent decision.
Your husband and I are both have lost our livers to hep C. If I remember correctly, Rambleon treated with little liver damage and landed up with long term side effects.
Our experiences differ affecting our views.
One big thing left out is how many people don't die because they've had a liver transplant.Or people with cirrhosis who die of other causes, be they health related or not.
If a person with dies from liver cancer do they attribute that to their having hep C ?
The other thing not covered is the recent discovery of how many diseases people are more prone to because of having hep C.
If they have lymphoma because of having hep C, what do they claim was the cause of death ?
Hep C is now the number one cause for liver transplantation in the US and kills more people in the US than AIDS. This was not true just a few years ago. No doubt left undiagnosed and untreated, we will see more casualties of this virus.
The majority of sites I've seen claim 20% of those with hep C will develop cirrhosis.
The problem with all these figures is they are estimates as nobody knows how many people truly have hep C.
My personal belief is that whether or not to treat and when is a personal decision. Ideally a qualified doctor helps to guide us, providing us with the information to make an intelligent decision.
Your husband and I are both have lost our livers to hep C. If I remember correctly, Rambleon treated with little liver damage and landed up with long term side effects.
Our experiences differ affecting our views.
I am referring to statements that imply treating hep-c doesn't really matter because such a low amount of people die from it... I sure wasn't meaning the poster was stupid, you can't explain stupid comments.
Maybe I should have said stupid comments, hell I have cirrhosis caused my hep c so I well know the problems it causes.
Maybe I should have said stupid comments, hell I have cirrhosis caused my hep c so I well know the problems it causes.
I get the math but I guess my problem is it feel it doesn't reflect the pain, suffering and havoc caused by this insidious virus. If infected people do not get the help they need, I'm certain those numbers will grow.
"So I am really not understanding a statement that seems to minimize the
dangers of Hep C and Cirrhosis.
Maybe someone can explain it to me... (scratching my head)"
Is it possible to explain stupid???
dangers of Hep C and Cirrhosis.
Maybe someone can explain it to me... (scratching my head)"
Is it possible to explain stupid???
350,000 / 150,000,000 = 35 / 15000 =0.00233 or 0.2% / yr who are infected with Hep C die from it.
I believe the CDC estimated it slightly higher in the US, at 0.3% / year.
I believe the CDC estimated it slightly higher in the US, at 0.3% / year.
I am having a problem with this statement after the last 18 months my husband and I have experienced. I think it gives a false sense of security.
"...1–5% die from cirrhosis or liver cancer."
The flip side of that statement is 95-99% do not die of cirrhosis or liver cancer. But tpeople are dying from the complications caused by the advanced liver disease that Hep C causes..
My husband had ESLD caused by Hep C and Stage 4 Cirrhosis. As his disease progressed he developed esophageal and stomach varices (which can cause a deadly bleed) and hepatic encephalopathy (which can lead to coma and death). He almost died twice over the last year: First, a prescribed antibiotic for the encephalopathy (neomycin) led to a hospitalization with imminent kidney failure. They were able to save him and his kidneys. Later, Hhs immune system was so weakened he got a serious viral infection and bacterial infection which almost put him in a encephalopathic coma. Thankfully, the doctors saved him again.
So I am really not understanding a statement that seems to minimize the
dangers of Hep C and Cirrhosis.
Maybe someone can explain it to me... (scratching my head)
"...1–5% die from cirrhosis or liver cancer."
The flip side of that statement is 95-99% do not die of cirrhosis or liver cancer. But tpeople are dying from the complications caused by the advanced liver disease that Hep C causes..
My husband had ESLD caused by Hep C and Stage 4 Cirrhosis. As his disease progressed he developed esophageal and stomach varices (which can cause a deadly bleed) and hepatic encephalopathy (which can lead to coma and death). He almost died twice over the last year: First, a prescribed antibiotic for the encephalopathy (neomycin) led to a hospitalization with imminent kidney failure. They were able to save him and his kidneys. Later, Hhs immune system was so weakened he got a serious viral infection and bacterial infection which almost put him in a encephalopathic coma. Thankfully, the doctors saved him again.
So I am really not understanding a statement that seems to minimize the
dangers of Hep C and Cirrhosis.
Maybe someone can explain it to me... (scratching my head)
From WHO, the world health organization ,July 2012.
http://www.who.int/mediacentre/factsheets/fs164/en/
About 150 million people are chronically infected with hepatitis C virus, and more than 350 000 people die every year from hepatitis C-related liver diseases.
About 75-85 % of newly infected persons develop chronic disease and 60–70% of chronically infected people develop chronic liver disease; 5–20% develop cirrhosis and 1–5% die from cirrhosis or liver cancer. In 25 % of liver cancer patients, the underlying cause is hepatitis C.
http://www.who.int/mediacentre/factsheets/fs164/en/
About 150 million people are chronically infected with hepatitis C virus, and more than 350 000 people die every year from hepatitis C-related liver diseases.
About 75-85 % of newly infected persons develop chronic disease and 60–70% of chronically infected people develop chronic liver disease; 5–20% develop cirrhosis and 1–5% die from cirrhosis or liver cancer. In 25 % of liver cancer patients, the underlying cause is hepatitis C.
I wouldnt have to do treatment if I went by that Doctor. I would die of cancer.Both of my Doctors cancer and liver Doctors tell me I dont have a choice my lympoma will come back as long as I have hep-c.
http://news.google.com/newspapers?nid=1876&dat=19910612&id=4bUeAAAAIBAJ&sjid=zc4EAAAAIBAJ&pg=6933,4110487
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