Aa
Choosing To Begin Tx
Hello to all in the forum. I am a 45 yr. old, geno 1a who has had Hep C for about 20 years. I failed mono tx in 1992-93. About 6 months ago I had a 'good' bx result. I was considering holding off on combo tx and continuing to 'sit tight'. But my last few labs have shown a rise in alph feta protein out of the normal range, as well as a rather dramatic rise in my viral load - it now stands at over 6 million. I have been hesitant to begin tx due to the fact that two family members have auto-immune diseases. The risks to me of the interferon triggering an underlying auto-immune reaction are very much unknown. But, understanding there can never be 'full' or 'complete' knowledge in doing anything like combo tx, I believe I must now give it a try. I realize that in all probabilty what is causing the change in my labs is that a new sub-strain of the Hep C virus is now dominant in my body. And this one may already be causing damage that prior one(s) may not have.
This forum and the people that post here have been and continue to be a true blessing to me - through wonderful support and great timely and pertinent information. Thank you for all your help. I will begin tx sometime in January, after my wife and I return from our annual Christmas vacation in Florida. I'm sure I will have many more questions as I go through treatment and I look forward to your continued help and support. May God's mercy be upon us all.
Sincerely,
TnHepGuy
PS - please use this thread as an open one.
This forum and the people that post here have been and continue to be a true blessing to me - through wonderful support and great timely and pertinent information. Thank you for all your help. I will begin tx sometime in January, after my wife and I return from our annual Christmas vacation in Florida. I'm sure I will have many more questions as I go through treatment and I look forward to your continued help and support. May God's mercy be upon us all.
Sincerely,
TnHepGuy
PS - please use this thread as an open one.
From whatI understand, alcohol, metamphetamines an ccocaine are like fertilizer for the virus, and help grow them much more rapidly than w/out-----Joni
Sorry to hear you have to do tx again. Combo tx is getting better results so hopefully this time it will work for you. Hope you have a nice time in Fl. LL
gary you should do better with combo than mono. you will get support on these boards. one day at a time.
teri your post was very thoughtful and extra nice. i dont know if im SVR yet but we do have to hope/pray for the best but yet prepare for the worst with this stuff. that doesnt discount a positive attitude at all either!!
the mind is so powerful just being diagnosed with hepc can make a person feel bad. i think it could be the same with relapse/non responders to tx.-- if you relapse you could start feeling bad again too. (not that its invalid)
teri your post was very thoughtful and extra nice. i dont know if im SVR yet but we do have to hope/pray for the best but yet prepare for the worst with this stuff. that doesnt discount a positive attitude at all either!!
the mind is so powerful just being diagnosed with hepc can make a person feel bad. i think it could be the same with relapse/non responders to tx.-- if you relapse you could start feeling bad again too. (not that its invalid)
Hepatitis C's time bomb ticks
Researchers fear ultimate toll may surpass AIDS
By Peter Gorner
Tribune science reporter
Published December 1, 2003
A stealthy enemy is lurking inside the bodies of millions of Americans that some medical experts fear may prove as devastating as AIDS.
These people feel perfectly healthy, unaware that a virus is quietly destroying their liver, cell by cell.
"The first sign I got was two years ago when I crashed with end-stage liver disease," said Robert Kolling, 55, of Bolingbrook. "I'm one of the lucky ones. I received a liver transplant a year ago."
The virus that nearly killed Kolling is hepatitis C, which is thought to have infected 170 million people around the world, including 3.9 million Americans. The major cause of liver transplants, chronic infection with hepatitis C can lead to cirrhosis, liver failure, liver cancer and death.
Last month researchers in St. Louis announced plans to begin human testing of the first vaccine against the virus, which is spread by direct contact with blood.
But many people with hepatitis C were unknowingly infected years ago through organ transplants, surgical procedures or blood transfusions before 1992, when stringent testing eliminated the virus from the nation's blood supply.
As those people age, and the virus does its damage, their plight is slowly becoming evident. Many specialists say they are being swamped with patients.
"It's a huge problem--perhaps 70 percent of my practice," said Dr. Donald Jensen, director of hepatology at Rush University Medical Center. "Each year, I'm seeing 700 new patients, and keeping track of another 3,000. Most are in their late 40s and early 50s and had no idea they were infected. Their only symptom was feeling fatigued. It was picked up through general screening or blood donation."
Between 8,000 and 10,000 people in the U.S. die each year from hepatitis C-related disease and liver cancer, and another 5,000 are listed for liver transplants. About 4,000 liver transplants are performed each year because of hepatitis C, according to the Centers for Disease Control and Prevention.
But those numbers may double or even triple over the next decade, Jensen said.
"The number of new cases is actually going down, but those that have been out there since the 1970s and '80s will be developing cirrhosis and liver cancer and needing liver transplants, particularly over the next 10 or 20 years."
Quiet 30-year assault on liver
It took the virus more than 30 years to destroy Kolling's liver. In 1969, as a 20-year-old infantryman in Vietnam, he had been wounded in a machinegun ambush. After several operations, he lost his right leg.
Eighteen units of blood saved his life, but the gift was tainted by a virus that at the time was unknown.
After recovering from his war wounds for 10 months, Kolling came home and resumed his life. He retired after 35 years as a technical writer for Lucent Technologies in Naperville.
But for decades the hepatitis C virus had been replicating inside him, making a trillion new viral particles a day, all of them aimed at his liver.
"The liver is a most forgiving organ," said Jensen, who is Kolling's doctor. "It has a lot of reserve and regenerative capacity, so you can feel perfectly well as your liver is being slowly destroyed and never realize it."
At a recent meeting of the American Association for the Study of Liver Diseases held in Boston, French and U.S. researchers presented mathematical models that predicted the growing costs of the hepatitis C epidemic may supplant the public health costs associated with HIV infection.
"This is a silent disease," Jensen said. "HIV-AIDS has garnered the headlines, but hepatitis C infects many more people than HIV."
The researchers also said U.S. death tolls due to HIV infection are expected to drop to 4,200 to 6,700 by 2030 as a result of antiretroviral therapies. But while, the annual mortality from hepatitis C infection was expected to rise to 14,000 to 19,000 by then.
Sharing needles and other items among drug users causes most new infections. Current and former injection drug users, prisoners, hemophiliacs, HIV-AIDS patients, and long-term kidney dialysis patients have estimated infection rates of 25 percent to 90 percent.
About 35,000 new cases are being reported annually in the U.S. The dangers are much higher in less developed countries, where the rates of infection are increasing and health experts believe a vaccine is the only hope for slowing the disease.
45 volunteers to test vaccine
Dr. Robert Belshe, head of the team that made the vaccine announcement, said they are just beginning the first phase of clinical testing with 45 volunteers, many of whom are health-care workers. They will receive differing strengths of the vaccine and be evaluated for antibody response over 18 months.
"Our vaccine is designed to prevent infection, and hence the long-term complications of the disease," said Belshe, director of the Center for Vaccine Development at St. Louis University.
The vaccine, developed by Chiron Corp., uses gene-splicing techniques to present parts of the virus to patients' bodies in hopes of stimulating an immune response.
New vaccines typically take a decade or more to make their way to the market.
Charles Rice, head of the Laboratory of Virology and Infectious Disease at Rockefeller University in New York, is also trying to come up with an effective vaccine against the virus. He and colleagues at other institutions formed the Center for the Study of Hepatitis C.
Rice said 30 percent of infected people naturally clear their systems of the virus, which might provide clues to developing a vaccine.
"However, even these people can get re-infected again, so surviving an infection doesn't seem to lead to the kind of memory responses by the immune system we'd like to stimulate by a vaccine," he said.
What Rice calls "the incredible variability" of the virus also makes a vaccine difficult.
"Within a single person, about a trillion particles are produced each day. Each one of those, on the average, has a genetic sequence different from the other ones," he said.
When someone is diagnosed with the disease, all isn't lost.
"If we know about it, we can treat it," Jensen said. "We have about a 55 percent cure rate for chronic disease. Those who don't have cirrhosis or advanced liver disease may go back to normal. They may lead perfectly normal lives."
One of Jensen's patient, David Sherman of Glencoe, has been infected for 25 years but has only minimal liver damage.
"I found out when I got a blood test in early 1990 and my liver enzymes were elevated," said Sherman, 43. "I'd received a blood transfusion in 1978 when I was 17 years old and ended up with the virus."
He attributes his health to a vigorous life. He owns a real estate business, runs two marathons a year and says he doesn't cater to his illness, except to monitor it closely.
"The medications for my type of virus are nasty, so I want to avoid them," he said. "I don't think my case is uncommon--if it's caught early, the vast majority of patients can live very well with this disease."
Far too many of those infected keep quiet about it, Sherman has observed.
"They're afraid other people will think they have a drinking problem or other lifestyle issues. That's a tragedy," he said.
When Kolling became ill, he had difficulty learning what was wrong with him. Diagnosis nearly came too late to help him.
"I began adding weight due to fluid retention. I showed signs of jaundice, and would tire easily. I would have lapses of memory and at times would be incoherent," he said.
Finally, on the brink of a coma, he was rushed to Rush and placed on the organ donor waiting list. "I was fortunate enough--or sick enough--to receive a liver transplant 10 days later," Kolling said.
He is celebrating his first year post-transplant and devotes a lot of time as a volunteer for various organizations, including the American Liver Foundation and the veterans group VietNow, based in Rockford.
In order to not reject the liver he must take 15 pills a day. The pills would cost $1,600 a month if the Department of Veterans Affairs did not pay for it. Side effects include headaches, mild diarrhea and sleep disorders.
Still, as his wife is fond of saying, "It's better than being dead," he said.
- - -
Understanding the hepatitis C virus
Hepatitis C is one of three main viruses in the U.S. known to cause hepatitis, a disease that invades the liver and sometimes causes permanent damage and death. Transmitted by blood, the hepatitis C virus often goes undetected for years.
WHO IS AT RISK
Nearly 4 million Americans have hepatitis C, and 8,000 to 10,000 people die from it each year. In about 10 percent of cases, no source of infection is identified.
Those at risk include:
- Blood transfusion recipients Before 1992, there was no standard screening for the virus, and as a result, people who received blood transfusions in the 1970s and 1980s are at risk for having the disease. People who received transfusions before 1992 should be tested for the virus.
- People exposed to needles
People also have contracted the virus by infected needles through:
IV drug use
Tattooing
Body piercing
Needle-stick injuries
- Other means of transmission The virus can be transmitted through sexual activity, and people who have had multiple partners are at greater risk. Transmission also has occurred among drug users sharing straws.
SYMPTOMS OF HEPATITIS C
People infected by the virus usually experience very mild symptoms, which often go unnoticed. The virus often is detected through routine blood tests or during the donation of blood.
Symptoms include:
Fatigue
Mild fever
Nausea
Muscle and joint aches
Abdominal pain
Diarrhea
Loss of appetite
LONG-TERM EFFECTS AND TREATMENT
- Effects As many as 70 percent of victims of chronic hepatitis C eventually develop active liver disease within 20 years, which can turn into liver cancer or cirrhosis, necessitating a liver transplant.
- Treatment
A combination of two drugs has been shown to control the virus in about half of all patients. For people who have advanced liver disease, liver transplantation is an option, but the virus will continue to exist in the body afterward.
Sources: Centers for Disease Control and Prevention, C. Everett Koop Institute at Dartmouth College and the American Liver Foundation
Chicago Tribune
Copyright
Researchers fear ultimate toll may surpass AIDS
By Peter Gorner
Tribune science reporter
Published December 1, 2003
A stealthy enemy is lurking inside the bodies of millions of Americans that some medical experts fear may prove as devastating as AIDS.
These people feel perfectly healthy, unaware that a virus is quietly destroying their liver, cell by cell.
"The first sign I got was two years ago when I crashed with end-stage liver disease," said Robert Kolling, 55, of Bolingbrook. "I'm one of the lucky ones. I received a liver transplant a year ago."
The virus that nearly killed Kolling is hepatitis C, which is thought to have infected 170 million people around the world, including 3.9 million Americans. The major cause of liver transplants, chronic infection with hepatitis C can lead to cirrhosis, liver failure, liver cancer and death.
Last month researchers in St. Louis announced plans to begin human testing of the first vaccine against the virus, which is spread by direct contact with blood.
But many people with hepatitis C were unknowingly infected years ago through organ transplants, surgical procedures or blood transfusions before 1992, when stringent testing eliminated the virus from the nation's blood supply.
As those people age, and the virus does its damage, their plight is slowly becoming evident. Many specialists say they are being swamped with patients.
"It's a huge problem--perhaps 70 percent of my practice," said Dr. Donald Jensen, director of hepatology at Rush University Medical Center. "Each year, I'm seeing 700 new patients, and keeping track of another 3,000. Most are in their late 40s and early 50s and had no idea they were infected. Their only symptom was feeling fatigued. It was picked up through general screening or blood donation."
Between 8,000 and 10,000 people in the U.S. die each year from hepatitis C-related disease and liver cancer, and another 5,000 are listed for liver transplants. About 4,000 liver transplants are performed each year because of hepatitis C, according to the Centers for Disease Control and Prevention.
But those numbers may double or even triple over the next decade, Jensen said.
"The number of new cases is actually going down, but those that have been out there since the 1970s and '80s will be developing cirrhosis and liver cancer and needing liver transplants, particularly over the next 10 or 20 years."
Quiet 30-year assault on liver
It took the virus more than 30 years to destroy Kolling's liver. In 1969, as a 20-year-old infantryman in Vietnam, he had been wounded in a machinegun ambush. After several operations, he lost his right leg.
Eighteen units of blood saved his life, but the gift was tainted by a virus that at the time was unknown.
After recovering from his war wounds for 10 months, Kolling came home and resumed his life. He retired after 35 years as a technical writer for Lucent Technologies in Naperville.
But for decades the hepatitis C virus had been replicating inside him, making a trillion new viral particles a day, all of them aimed at his liver.
"The liver is a most forgiving organ," said Jensen, who is Kolling's doctor. "It has a lot of reserve and regenerative capacity, so you can feel perfectly well as your liver is being slowly destroyed and never realize it."
At a recent meeting of the American Association for the Study of Liver Diseases held in Boston, French and U.S. researchers presented mathematical models that predicted the growing costs of the hepatitis C epidemic may supplant the public health costs associated with HIV infection.
"This is a silent disease," Jensen said. "HIV-AIDS has garnered the headlines, but hepatitis C infects many more people than HIV."
The researchers also said U.S. death tolls due to HIV infection are expected to drop to 4,200 to 6,700 by 2030 as a result of antiretroviral therapies. But while, the annual mortality from hepatitis C infection was expected to rise to 14,000 to 19,000 by then.
Sharing needles and other items among drug users causes most new infections. Current and former injection drug users, prisoners, hemophiliacs, HIV-AIDS patients, and long-term kidney dialysis patients have estimated infection rates of 25 percent to 90 percent.
About 35,000 new cases are being reported annually in the U.S. The dangers are much higher in less developed countries, where the rates of infection are increasing and health experts believe a vaccine is the only hope for slowing the disease.
45 volunteers to test vaccine
Dr. Robert Belshe, head of the team that made the vaccine announcement, said they are just beginning the first phase of clinical testing with 45 volunteers, many of whom are health-care workers. They will receive differing strengths of the vaccine and be evaluated for antibody response over 18 months.
"Our vaccine is designed to prevent infection, and hence the long-term complications of the disease," said Belshe, director of the Center for Vaccine Development at St. Louis University.
The vaccine, developed by Chiron Corp., uses gene-splicing techniques to present parts of the virus to patients' bodies in hopes of stimulating an immune response.
New vaccines typically take a decade or more to make their way to the market.
Charles Rice, head of the Laboratory of Virology and Infectious Disease at Rockefeller University in New York, is also trying to come up with an effective vaccine against the virus. He and colleagues at other institutions formed the Center for the Study of Hepatitis C.
Rice said 30 percent of infected people naturally clear their systems of the virus, which might provide clues to developing a vaccine.
"However, even these people can get re-infected again, so surviving an infection doesn't seem to lead to the kind of memory responses by the immune system we'd like to stimulate by a vaccine," he said.
What Rice calls "the incredible variability" of the virus also makes a vaccine difficult.
"Within a single person, about a trillion particles are produced each day. Each one of those, on the average, has a genetic sequence different from the other ones," he said.
When someone is diagnosed with the disease, all isn't lost.
"If we know about it, we can treat it," Jensen said. "We have about a 55 percent cure rate for chronic disease. Those who don't have cirrhosis or advanced liver disease may go back to normal. They may lead perfectly normal lives."
One of Jensen's patient, David Sherman of Glencoe, has been infected for 25 years but has only minimal liver damage.
"I found out when I got a blood test in early 1990 and my liver enzymes were elevated," said Sherman, 43. "I'd received a blood transfusion in 1978 when I was 17 years old and ended up with the virus."
He attributes his health to a vigorous life. He owns a real estate business, runs two marathons a year and says he doesn't cater to his illness, except to monitor it closely.
"The medications for my type of virus are nasty, so I want to avoid them," he said. "I don't think my case is uncommon--if it's caught early, the vast majority of patients can live very well with this disease."
Far too many of those infected keep quiet about it, Sherman has observed.
"They're afraid other people will think they have a drinking problem or other lifestyle issues. That's a tragedy," he said.
When Kolling became ill, he had difficulty learning what was wrong with him. Diagnosis nearly came too late to help him.
"I began adding weight due to fluid retention. I showed signs of jaundice, and would tire easily. I would have lapses of memory and at times would be incoherent," he said.
Finally, on the brink of a coma, he was rushed to Rush and placed on the organ donor waiting list. "I was fortunate enough--or sick enough--to receive a liver transplant 10 days later," Kolling said.
He is celebrating his first year post-transplant and devotes a lot of time as a volunteer for various organizations, including the American Liver Foundation and the veterans group VietNow, based in Rockford.
In order to not reject the liver he must take 15 pills a day. The pills would cost $1,600 a month if the Department of Veterans Affairs did not pay for it. Side effects include headaches, mild diarrhea and sleep disorders.
Still, as his wife is fond of saying, "It's better than being dead," he said.
- - -
Understanding the hepatitis C virus
Hepatitis C is one of three main viruses in the U.S. known to cause hepatitis, a disease that invades the liver and sometimes causes permanent damage and death. Transmitted by blood, the hepatitis C virus often goes undetected for years.
WHO IS AT RISK
Nearly 4 million Americans have hepatitis C, and 8,000 to 10,000 people die from it each year. In about 10 percent of cases, no source of infection is identified.
Those at risk include:
- Blood transfusion recipients Before 1992, there was no standard screening for the virus, and as a result, people who received blood transfusions in the 1970s and 1980s are at risk for having the disease. People who received transfusions before 1992 should be tested for the virus.
- People exposed to needles
People also have contracted the virus by infected needles through:
IV drug use
Tattooing
Body piercing
Needle-stick injuries
- Other means of transmission The virus can be transmitted through sexual activity, and people who have had multiple partners are at greater risk. Transmission also has occurred among drug users sharing straws.
SYMPTOMS OF HEPATITIS C
People infected by the virus usually experience very mild symptoms, which often go unnoticed. The virus often is detected through routine blood tests or during the donation of blood.
Symptoms include:
Fatigue
Mild fever
Nausea
Muscle and joint aches
Abdominal pain
Diarrhea
Loss of appetite
LONG-TERM EFFECTS AND TREATMENT
- Effects As many as 70 percent of victims of chronic hepatitis C eventually develop active liver disease within 20 years, which can turn into liver cancer or cirrhosis, necessitating a liver transplant.
- Treatment
A combination of two drugs has been shown to control the virus in about half of all patients. For people who have advanced liver disease, liver transplantation is an option, but the virus will continue to exist in the body afterward.
Sources: Centers for Disease Control and Prevention, C. Everett Koop Institute at Dartmouth College and the American Liver Foundation
Chicago Tribune
Copyright
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