Aa
Viral
I finally got my Viral Load & Geno Loads taken. My doctor says they are 3 & 2 Million (& then some). Should I be concerned about this?
thanbey, first of all I appreciate your participation in this forum and secondly, I enjoy your comments and links to HCV information. However, why are we all taking interferon/ribavirin to eradicate HCV if the virus and it's complications are not going to kill us at some point? Your comments are inconsistent with information provided by the NIH that states "An estimated 8,000-10,000 Americans die annually of complications related to HCV. This figure is expected to triple in the next 10-20 years." Indeed, if 4 million people in the US have HCV and 10,000 of them die from it's complications, mathematically it is a small percentage. It is not a club of which I'd like to be a member. I know that I certainly don't want to die (not at the tender age of 50!), get liver cancer, cirrhosis, fibrosis, have a liver transplant or lead a sickly HCV existence until I expire. Speaking for myself and with all due respect, I think your comments directed at a group of HCV folks, struggling with the disease and tx are a bit too cavalier and insensitive.
"thanbey, first of all I appreciate your participation in this forum and secondly, I enjoy your comments and links to HCV information."
Thank you very much.
"However, why are we all taking interferon/ribavirin to eradicate HCV if the virus and it's complications are not going to kill us at some point?"
Number one not everyone is, or can, undertake interferon therapy. Those who cannot, do not, or who do not respond are important people to consider, just as those who choose to treat are important.
The reason people treat is because it is what is availalbe at this time and the only thing that is FDA approved. The short-commings of the current treatments are well documented and the risks are real. Those who can be treated and who can tolerate the treatment are a minority of people. In the USA, the medical system demands a doctor prescribe what is currently available or face possible legal consequences. And I personally support anyone who wishes to undertake interferon therapy for any reason. It is about choices and options based on sound information.
"Your comments are inconsistent with information provided by the NIH that states "An estimated 8,000-10,000 Americans die annually of complications related to HCV. This figure is expected to triple in the next 10-20 years." Indeed, if 4 million people in the US have HCV and 10,000 of them die from it's complications, mathematically it is a small percentage."
My comments are totally consistent with the NIH conference presntations, many of which did not agree and the statistics in the presentations being under discussion, not written in stone.
A presentation made by the Hepatitis C Outreach Project at the invitation of the NIH, spoke to this. What we pointed out to the participants is that, without a screening and testing program in this country, people are being diagnosed too late. Lifestyle choices, particulalry alcohol and smoking, fatty livers and many other factors, including genetics, play a role in how progression will advance, when it advances. Early diagnosis affords the greatest choice for patient and provider. And, when it comes to the situation we are now in where treatments are not adequate, that can make a critical difference.
People are dying because of a lack available organs and donors and inadequate treatment options. We do not have a cure yet. They are dying because they are not diagnosed early enough in the disease to make changes that make a difference.
They will continue to die in spite of the current treatments. We need better treatment. We need treatment that is affordable, tolerable and effective. Such a treatment does not currently exist.
Right now treatment is the choice of a only a few. Interferon were availalbe to everyone, people would still die because it is not appropriate for everyone and does not work more than half the time, and we are still not sure what the definition of "work" is.
"It is not a club of which I'd like to be a member. I know that I certainly don't want to die (not at the tender age of 50!), get liver cancer, cirrhosis, fibrosis, have a liver transplant or lead a sickly HCV existence until I expire."
You are fortunate to have the choice you do. I sincerely hope that your choice results in the best possible result for you. If it does not, there is still every reason to believe you will not be a member of that club, anyway.
"Speaking for myself and with all due respect, I think your comments directed at a group of HCV folks, struggling with the disease and tx are a bit too cavalier and insensitive."
I am sorry you see it that way. I would like to think we can all learn to change our perceptions to include those who have hepatitis C who are poor, African American, inmates, who have not responded or cannot treat due to other co-morbiditites and others who do not have the good fortune you do. In my opinion, it would be a good idea to come to grips with the reality that this community deserves better than what is available now and not to settle on this as a cure. That belief will line the pocket of the drug companies, but hardly do anything to eradicate the virus. My moral compass dictates that I tell the truth even when I don't like the truth. And, I don't like this truth. I want interferon to be the panacea for hepatitis C, but it isn't. It just isn't. It is the best we have, but it isn't good enough.
To continue to direct all attention to those who can tolerate treatment or who can afford treatment does an injustice to those who come here seeking information, support and hope. To assume that staying on treatment is worth all costs and all risks is simply insensitive to others who cannot do so. It's a balance we all have to try to maintain. I'm doing my best and I thank you sincerely for this opportunity to respond to your comments in a civilized exchange of ideas.
thanbey
Thank you very much.
"However, why are we all taking interferon/ribavirin to eradicate HCV if the virus and it's complications are not going to kill us at some point?"
Number one not everyone is, or can, undertake interferon therapy. Those who cannot, do not, or who do not respond are important people to consider, just as those who choose to treat are important.
The reason people treat is because it is what is availalbe at this time and the only thing that is FDA approved. The short-commings of the current treatments are well documented and the risks are real. Those who can be treated and who can tolerate the treatment are a minority of people. In the USA, the medical system demands a doctor prescribe what is currently available or face possible legal consequences. And I personally support anyone who wishes to undertake interferon therapy for any reason. It is about choices and options based on sound information.
"Your comments are inconsistent with information provided by the NIH that states "An estimated 8,000-10,000 Americans die annually of complications related to HCV. This figure is expected to triple in the next 10-20 years." Indeed, if 4 million people in the US have HCV and 10,000 of them die from it's complications, mathematically it is a small percentage."
My comments are totally consistent with the NIH conference presntations, many of which did not agree and the statistics in the presentations being under discussion, not written in stone.
A presentation made by the Hepatitis C Outreach Project at the invitation of the NIH, spoke to this. What we pointed out to the participants is that, without a screening and testing program in this country, people are being diagnosed too late. Lifestyle choices, particulalry alcohol and smoking, fatty livers and many other factors, including genetics, play a role in how progression will advance, when it advances. Early diagnosis affords the greatest choice for patient and provider. And, when it comes to the situation we are now in where treatments are not adequate, that can make a critical difference.
People are dying because of a lack available organs and donors and inadequate treatment options. We do not have a cure yet. They are dying because they are not diagnosed early enough in the disease to make changes that make a difference.
They will continue to die in spite of the current treatments. We need better treatment. We need treatment that is affordable, tolerable and effective. Such a treatment does not currently exist.
Right now treatment is the choice of a only a few. Interferon were availalbe to everyone, people would still die because it is not appropriate for everyone and does not work more than half the time, and we are still not sure what the definition of "work" is.
"It is not a club of which I'd like to be a member. I know that I certainly don't want to die (not at the tender age of 50!), get liver cancer, cirrhosis, fibrosis, have a liver transplant or lead a sickly HCV existence until I expire."
You are fortunate to have the choice you do. I sincerely hope that your choice results in the best possible result for you. If it does not, there is still every reason to believe you will not be a member of that club, anyway.
"Speaking for myself and with all due respect, I think your comments directed at a group of HCV folks, struggling with the disease and tx are a bit too cavalier and insensitive."
I am sorry you see it that way. I would like to think we can all learn to change our perceptions to include those who have hepatitis C who are poor, African American, inmates, who have not responded or cannot treat due to other co-morbiditites and others who do not have the good fortune you do. In my opinion, it would be a good idea to come to grips with the reality that this community deserves better than what is available now and not to settle on this as a cure. That belief will line the pocket of the drug companies, but hardly do anything to eradicate the virus. My moral compass dictates that I tell the truth even when I don't like the truth. And, I don't like this truth. I want interferon to be the panacea for hepatitis C, but it isn't. It just isn't. It is the best we have, but it isn't good enough.
To continue to direct all attention to those who can tolerate treatment or who can afford treatment does an injustice to those who come here seeking information, support and hope. To assume that staying on treatment is worth all costs and all risks is simply insensitive to others who cannot do so. It's a balance we all have to try to maintain. I'm doing my best and I thank you sincerely for this opportunity to respond to your comments in a civilized exchange of ideas.
thanbey
HCV is NOT just a liver disease, and should not be judged on its morbidity alone. Until that changes, there will not be widespread screening that will lead to a more accurate picture of the hcv presence in the population.
There will not be a clear picture of how this chronic illness has decreased the quality of life of ? number of people.
It is not death from liver disease that I fear, but the reduced enjoyment of health and life activities. Until this is clear to the non-infected, we will not see further treatment options.
There will not be a clear picture of how this chronic illness has decreased the quality of life of ? number of people.
It is not death from liver disease that I fear, but the reduced enjoyment of health and life activities. Until this is clear to the non-infected, we will not see further treatment options.
JUST BECAUSE YOUR HEAD IS IN THE SAND IT DOES NOT MEAN YOU DON'T HAVE A DIRTY BUTT!!!
no one hear is saying that anyone will deffinately die of liver disease. we are simply saying that we COULD IF WE ARE NOT CAREFUL!
we are not going to hide our eyes like a kid and pretend that everything is going to be ok. apparently you have not had your loved one die of liver disease...i have!!!
believe me it's not pretty!!! both treatment and nontreatment need to be concidered very seriously.
p.s. i agree whole heartedly about the alchohol. i was just havin a little fun with indy...
i completely disagree (and i hope that's ok with you) about people with type 3. type 3 causes steatosis, see artical below:
http://merck.praxis.md/index.asp?page=pubmedAbstract&PubMedID=14960527&hilight=STEATOSIS
by the way steatosis can lead to liver death in and of itself...
if this artical doesn't do the trick let me know. there are many other articles on type 3.
it is the fact that type 3 has been shown to lead to worse steatosis than the other types, and that is a cause for worsening fibrosis...
no one hear is saying that anyone will deffinately die of liver disease. we are simply saying that we COULD IF WE ARE NOT CAREFUL!
we are not going to hide our eyes like a kid and pretend that everything is going to be ok. apparently you have not had your loved one die of liver disease...i have!!!
believe me it's not pretty!!! both treatment and nontreatment need to be concidered very seriously.
p.s. i agree whole heartedly about the alchohol. i was just havin a little fun with indy...
i completely disagree (and i hope that's ok with you) about people with type 3. type 3 causes steatosis, see artical below:
http://merck.praxis.md/index.asp?page=pubmedAbstract&PubMedID=14960527&hilight=STEATOSIS
by the way steatosis can lead to liver death in and of itself...
if this artical doesn't do the trick let me know. there are many other articles on type 3.
it is the fact that type 3 has been shown to lead to worse steatosis than the other types, and that is a cause for worsening fibrosis...
WOW.......Nice discussion everyone. SEE...We CAN all "play" nice and still get all our points across.
Ok...Here are some links on Genotype 3 and progression. I was not exactly correct in that Type 3's do NOT automatically have worse fibrosis. Tyoe 3's DO have worse Steatosis....which leads to fibrosis...and also has complications of its own and can still kill you with or without the virus.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=11391523&dopt=Abstract
http://www1.elsevier.com/gej-ng/10/26/38/99/48/44/abstract.html
http://hcvadvocate.org/news/newsRev/2004/HJR-1.5.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12445426&dopt=Abstract
http://www.askemilyss.com/bites/bite0701/steat.htm
Thanbey....I for one welcome your comments no matter what they are. I think that it is fair to allow everyone to have ALL the credible information they can find to make their own appropriate decisions. The others who can't do tx or fail at it need some support that many of us who are "Tx oriented" can't really offer. We just don't look at that stuff much but rather focus our energies on getting through tx as well as possible. That other info is much needed by some folks. Thank you for giving them something to latch on to.
Scott.........Good Job there man. I'm proud of ya.
Ok...Here are some links on Genotype 3 and progression. I was not exactly correct in that Type 3's do NOT automatically have worse fibrosis. Tyoe 3's DO have worse Steatosis....which leads to fibrosis...and also has complications of its own and can still kill you with or without the virus.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=11391523&dopt=Abstract
http://www1.elsevier.com/gej-ng/10/26/38/99/48/44/abstract.html
http://hcvadvocate.org/news/newsRev/2004/HJR-1.5.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12445426&dopt=Abstract
http://www.askemilyss.com/bites/bite0701/steat.htm
Thanbey....I for one welcome your comments no matter what they are. I think that it is fair to allow everyone to have ALL the credible information they can find to make their own appropriate decisions. The others who can't do tx or fail at it need some support that many of us who are "Tx oriented" can't really offer. We just don't look at that stuff much but rather focus our energies on getting through tx as well as possible. That other info is much needed by some folks. Thank you for giving them something to latch on to.
Scott.........Good Job there man. I'm proud of ya.
Ok...First...ROFL I tripped Indy on the way out the door as I was entering! heh I guess he had his jollies for the day on his way to work but the real pic I would like to see...Is his reaction when he saw thread "sensitive subject" hahaha I bet he couldn't click quick enough to get to that posting!!
Now your prob...I haven't had that....Yet! So who knows but I'm thinking today watch everything you eat...very bland things only. Drink some green tea if you have just to relax your stomach and see if changing up diet a little helps relieve it. I know this may not help but...Geeze! We never know at times what to do short of bleeding from the butt, foaming at the mouth or passed out cold on floor...When do you call the paramedics? But seriously...if persists I would definitely call your dr. This tx is nothing to mess with!! Good Luck!
Now your prob...I haven't had that....Yet! So who knows but I'm thinking today watch everything you eat...very bland things only. Drink some green tea if you have just to relax your stomach and see if changing up diet a little helps relieve it. I know this may not help but...Geeze! We never know at times what to do short of bleeding from the butt, foaming at the mouth or passed out cold on floor...When do you call the paramedics? But seriously...if persists I would definitely call your dr. This tx is nothing to mess with!! Good Luck!
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