thanbey
12-30-2002, 10:39 AM
Hi Sam and Welcome
Since I came late to your discussion I am going to offer some input in response to your combined posts. I am also beginning a new topic to make this easier to find for those who come after.
If you want to look up posts from me or any other poster that interests you, you can do a search. You must put in a time frame (or you won't get as many past posts) Look up to the left of the messages for this option.
First of all, have you had a biopsy? Is that where you came to understand that you have some fibrosis, and how much fibrosis are we talking about here?
If you have been a smoker and used alcohol even socially, you can expect that this may be (in combination with the virus) the actual cause of the fibrosis and not necessarily the virus itself. Making necessary changes in self care could produce a much better result, and certainly a less risky first strategy, than interferon treatment. Depending on the biopsy result, there is most likely time to try this and see whether it will produce results for you, while being monitored closely for changes.
Since, in the absence of smoking and alcohol use, the fibrosis more often than not moves extremely slowly, another biopsy in 3-5 years will tell whether you have any changes. By that time, treatment options will be better as well.
That is one option. Treatment with the interferons is certainly another. With regard to the treatment, it can reduce the viral load in the bloodstream, and hopefully, in the rest of the body (unproven at this time). Under the very best of circumstances, this occurs approximately 50% of the time.
The viral load and the rate of progression, if any, are seemingly unrelated. This means a high viral load does not indicate liver damage and vice versa; a low viral load does not indicate no damage. This is truly vexing because this is how we measure treatment outcome; by viral load reduction/elimination. We seek a result that we really do not know for certain has a true benefit in the long run.
Genotype has absolutely no meaning other than to determine how long treatment should continue. It takes longer for those with a genotype one to realize viral reduction, when this occurs at all. There is no benefit to those with genotypes other than 1 to continue beyond six months, or to continue in any patient of any genotype who has not realized viral reduction at 12 weeks. So far as we know now, genotype has no bearing on disease severity either. What we do know is that a non-response to treatment in genotype 1 means that subsequent efforts to treat rarely result in viral reduction.
However, for those with significant fibrosis and who have no idication against it, the risks of treatment are worthy of consideration due to the potential for histological improvement. It still does not mean doom for those who do not, or cannot, treat with interferons. Those patient are still very likely to benefit greatly from the self care and lifestyle modifications, including some nutritional supplementation that may be of help (but have not shown any harmful effects)
What we do know is that there is a small chance that the interferon treatment will reduce some of the fibrosis. What nearly everyone hopes for (as distinct from scientific evidence poving it) is that treatment will arrest progression and even reverse fibrosis.
We are still not completely sure that a biopsy is foolproof but it is the gold standard at present. In my opinion, it should be the standard for treatment outcome. However, the biopsy is an invasive procedure and very expensive. Nevertheless, considering the risks involved and the stakes for some people, I still think a case can be made for this. It would not sell as much interferon, though.
So, we have a very moveable feast of information, superstition, hope and evidence.
The medical community currently has a limited range of options, mainly due to legal considerations as much as anything. A doctor can be considered remiss in not offering the "state of the art" as it is represented to him/her. And, patients reading the internet and seeing marketing material in the doctor's office often are lead to believe that hepatitis C is a "deadly" disease worthy of the risks. Direct to consumer marketing is the subject of current federal investigations.
Currently, that state of the art is Pegasys and ribaviron (Copegus) and it is indicated for those with demonstrated progression of disease.
What may have caused the progression is less clear. I believe the research is indicating that, with early detection, self care (no smoking, alcohol, toxins, moderate exercise, weight control) is likely to be a better strategy than early treatment. Early treatment has consequences. Treatment itself has consequences. The side effects are not the only potential consequences. You could, depending on your own medical history and family history, end up with more severe problems than hepatitis C that will last, potentially, lifelong.
A treatment decision is not something to be taken lightly. Too many physicians are still too quick withe the prescription pad and do not review the entire medical history or interview patients for values and personal circumstances. These are a critical part of the treatment decision. But, there is little legal consequence to writing a prescription. The consequence, where it is found, falls to the patient.
If you need and desire treatment, be sure it is based on a full picture of what this might mean to you, to your family and relationships, to your future health, and to your economic health as well. Where do you place the most value and what risk are you willing to accept?
While we would like to have simple, formulaic answers, The fact is that a knowledgeable doctor and a knowlegeable patient working together are the best combination therapy there is.
A review of options, risks of treatment from a medical and psychosocial point of view, from a values assessment, to a thorough workup for potential side effects are about the best way to determine whether THIS patient is at risk for serious, long term side effects of treatment, and whether THIS patient is likely to have the necessary balance of factors that make treatment of more potential benefit than not.
All the statistics and the marketing material, experiences and opinions of other patients, advocates and others to the contrary, it matters ONLY whether YOUR medical and social factors are in favor of YOU doing the treatment. It takes effort and time to determine this. Or you can rely on luck. Many do.
I hope this helps,
thanbey
www.hcop.org (http://www.hcop.org)
------------------
www.hcop.org (http://www.hcop.org)
preapproved by moderator1
[This message has been edited by thanbey (edited 12-30-2002).]
Since I came late to your discussion I am going to offer some input in response to your combined posts. I am also beginning a new topic to make this easier to find for those who come after.
If you want to look up posts from me or any other poster that interests you, you can do a search. You must put in a time frame (or you won't get as many past posts) Look up to the left of the messages for this option.
First of all, have you had a biopsy? Is that where you came to understand that you have some fibrosis, and how much fibrosis are we talking about here?
If you have been a smoker and used alcohol even socially, you can expect that this may be (in combination with the virus) the actual cause of the fibrosis and not necessarily the virus itself. Making necessary changes in self care could produce a much better result, and certainly a less risky first strategy, than interferon treatment. Depending on the biopsy result, there is most likely time to try this and see whether it will produce results for you, while being monitored closely for changes.
Since, in the absence of smoking and alcohol use, the fibrosis more often than not moves extremely slowly, another biopsy in 3-5 years will tell whether you have any changes. By that time, treatment options will be better as well.
That is one option. Treatment with the interferons is certainly another. With regard to the treatment, it can reduce the viral load in the bloodstream, and hopefully, in the rest of the body (unproven at this time). Under the very best of circumstances, this occurs approximately 50% of the time.
The viral load and the rate of progression, if any, are seemingly unrelated. This means a high viral load does not indicate liver damage and vice versa; a low viral load does not indicate no damage. This is truly vexing because this is how we measure treatment outcome; by viral load reduction/elimination. We seek a result that we really do not know for certain has a true benefit in the long run.
Genotype has absolutely no meaning other than to determine how long treatment should continue. It takes longer for those with a genotype one to realize viral reduction, when this occurs at all. There is no benefit to those with genotypes other than 1 to continue beyond six months, or to continue in any patient of any genotype who has not realized viral reduction at 12 weeks. So far as we know now, genotype has no bearing on disease severity either. What we do know is that a non-response to treatment in genotype 1 means that subsequent efforts to treat rarely result in viral reduction.
However, for those with significant fibrosis and who have no idication against it, the risks of treatment are worthy of consideration due to the potential for histological improvement. It still does not mean doom for those who do not, or cannot, treat with interferons. Those patient are still very likely to benefit greatly from the self care and lifestyle modifications, including some nutritional supplementation that may be of help (but have not shown any harmful effects)
What we do know is that there is a small chance that the interferon treatment will reduce some of the fibrosis. What nearly everyone hopes for (as distinct from scientific evidence poving it) is that treatment will arrest progression and even reverse fibrosis.
We are still not completely sure that a biopsy is foolproof but it is the gold standard at present. In my opinion, it should be the standard for treatment outcome. However, the biopsy is an invasive procedure and very expensive. Nevertheless, considering the risks involved and the stakes for some people, I still think a case can be made for this. It would not sell as much interferon, though.
So, we have a very moveable feast of information, superstition, hope and evidence.
The medical community currently has a limited range of options, mainly due to legal considerations as much as anything. A doctor can be considered remiss in not offering the "state of the art" as it is represented to him/her. And, patients reading the internet and seeing marketing material in the doctor's office often are lead to believe that hepatitis C is a "deadly" disease worthy of the risks. Direct to consumer marketing is the subject of current federal investigations.
Currently, that state of the art is Pegasys and ribaviron (Copegus) and it is indicated for those with demonstrated progression of disease.
What may have caused the progression is less clear. I believe the research is indicating that, with early detection, self care (no smoking, alcohol, toxins, moderate exercise, weight control) is likely to be a better strategy than early treatment. Early treatment has consequences. Treatment itself has consequences. The side effects are not the only potential consequences. You could, depending on your own medical history and family history, end up with more severe problems than hepatitis C that will last, potentially, lifelong.
A treatment decision is not something to be taken lightly. Too many physicians are still too quick withe the prescription pad and do not review the entire medical history or interview patients for values and personal circumstances. These are a critical part of the treatment decision. But, there is little legal consequence to writing a prescription. The consequence, where it is found, falls to the patient.
If you need and desire treatment, be sure it is based on a full picture of what this might mean to you, to your family and relationships, to your future health, and to your economic health as well. Where do you place the most value and what risk are you willing to accept?
While we would like to have simple, formulaic answers, The fact is that a knowledgeable doctor and a knowlegeable patient working together are the best combination therapy there is.
A review of options, risks of treatment from a medical and psychosocial point of view, from a values assessment, to a thorough workup for potential side effects are about the best way to determine whether THIS patient is at risk for serious, long term side effects of treatment, and whether THIS patient is likely to have the necessary balance of factors that make treatment of more potential benefit than not.
All the statistics and the marketing material, experiences and opinions of other patients, advocates and others to the contrary, it matters ONLY whether YOUR medical and social factors are in favor of YOU doing the treatment. It takes effort and time to determine this. Or you can rely on luck. Many do.
I hope this helps,
thanbey
www.hcop.org (http://www.hcop.org)
------------------
www.hcop.org (http://www.hcop.org)
preapproved by moderator1
[This message has been edited by thanbey (edited 12-30-2002).]