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Effect of Peginterferon Alfa-2a (Pegasys) on Liver Histology in Chronic HCV
This is very good news and adds evidence to the histolgic effects of interferon.
If anyone doesn't achieve the "12 week 2 log drop" magic number this is a good study to show to the doctors if they want you to stop treatment.
If anyone doesn't achieve the "12 week 2 log drop" magic number this is a good study to show to the doctors if they want you to stop treatment.
First of all, I had nothing but studies and links, downloadable brochures,and links before 2 weeks ago when we installed new software. So, I am not sure what,exactly you were reading that you now characterize as anti-treatment at all. And, actually, what in the world is anti-treatment or pro-treatment? It just is what it is. People choose what information they want to discuss with their doctors. The best anyone here can do is open that base of information a little for purposes of a discussion.
Second, you are correct in that I do not know what the "right thing to do" is for any one individual. No one else here does, either. I cannot say, for example if a young healthy woman cares whether interferon can impact her fertility or not, but it might be important for a woman to make that choice herself based on her own values and plans for her life, rather than finding out after it is too late. I get nearly thousand emails a week from people around the world. Three thousand if you include all the spam.
If people are steered away from treatment, it might be because they are making choices for themselves based on broader information. It's all about having enough information to make choices based on your opwn values and medical situation.
Almost no one has to treat in a hurry and almost all can take the time to decide, research and plan treatment if they want treatment. Some people may not choose it, may not be medically appropriate for it or may not wish to put their lives, careers and relationships on hold. And some don't need to treat at all. I see more pressure in the other direction than anything. The treat or die message is simply a cruel hoax. We know that the majority of people with hepatitis C can live with it and will likely die of something else. THAT is a message of hope. It is especially a message of hope for those who cannot treat, cannot afford to treat, have no health insurance or are African American (for whom treatment does not work)They need hope, too. This isn't a luxury disease of the well-insured middle class.
Encouraging people to suffer needlessly is my view of cruel. Borne of good intent doesn't change the fact that no one is learning the difficulties of treatment from me. I reviewed this board before ever posting and I have offered only responses to people's queries. Discussions regarding the suffering of the treatment pre-date my arrival.
It takes someone's dignity away to make decisions about what they should be told and when. Witholding knowledge is also my version of cruel.
"Touting" the website is a time saver for me. I have complied information and letters, advice and information. Go there or not, it is your choice. It saves me time to link up rather than type out the information hundreds of times.
Second, you are correct in that I do not know what the "right thing to do" is for any one individual. No one else here does, either. I cannot say, for example if a young healthy woman cares whether interferon can impact her fertility or not, but it might be important for a woman to make that choice herself based on her own values and plans for her life, rather than finding out after it is too late. I get nearly thousand emails a week from people around the world. Three thousand if you include all the spam.
If people are steered away from treatment, it might be because they are making choices for themselves based on broader information. It's all about having enough information to make choices based on your opwn values and medical situation.
Almost no one has to treat in a hurry and almost all can take the time to decide, research and plan treatment if they want treatment. Some people may not choose it, may not be medically appropriate for it or may not wish to put their lives, careers and relationships on hold. And some don't need to treat at all. I see more pressure in the other direction than anything. The treat or die message is simply a cruel hoax. We know that the majority of people with hepatitis C can live with it and will likely die of something else. THAT is a message of hope. It is especially a message of hope for those who cannot treat, cannot afford to treat, have no health insurance or are African American (for whom treatment does not work)They need hope, too. This isn't a luxury disease of the well-insured middle class.
Encouraging people to suffer needlessly is my view of cruel. Borne of good intent doesn't change the fact that no one is learning the difficulties of treatment from me. I reviewed this board before ever posting and I have offered only responses to people's queries. Discussions regarding the suffering of the treatment pre-date my arrival.
It takes someone's dignity away to make decisions about what they should be told and when. Witholding knowledge is also my version of cruel.
"Touting" the website is a time saver for me. I have complied information and letters, advice and information. Go there or not, it is your choice. It saves me time to link up rather than type out the information hundreds of times.
I apologize, but after reading your posts for the last few days, I have felt a complete change in the feel of this Board(if that is at all possbile by reading). I have seen the hope and faith drain from normally optimistic people who are struggling to achieve a goal. People ready to stop treatment because hopelessness has been instilled? Why would you do that to people? Can't you see how things have changed? Why would you put doubts in these people's minds when it is a struggle everyday for some to continue? In my opinion, and only my opinion, a pessimistic attitude is like poison on this site. Please do not do this to them. Let them keep their faith and hope. The emotional rollercoaster that they are on, even on a "good day" where they know that they are doing the right thing, is hard enough. But to have them read some of the stuff that you post on a "bad day" is unfair and cruel.
Just my opinion.
Just my opinion.
Thanbey, "the best you can do" is give your information concisely and then leave it alone. I read your citing of studies and antitreatment attitude for a couple of years on your website. Of course you have very good points but it is all so doctrinaire. You really don't know what is the right thing to do. It comes down to a person and his/her doctor and trying to do the right thing for the quality of life and prolonging life.
It might work or it might not. I have been continuously on treatment for two years. My blood test numbers are better but I don't have the energy I had before treatment. It is a tradeoff. Side effects are not going to keep me from giving this my best shot. My feeling is that TRUST of each person's doctor is the most important thing. Also, my doctor is adamant that treatment has to be very individual. What works for one person in one situation may not work for someone else in the same situation. All he does is work with Hep C patients. The citing of references to Hep C experts is interesting to read,--if I feel like it,--but really I think having HOPE is a thousand times more important. The writers on this website are not in denial. But they want to express how they feel. As one nurse said to me--"Clear your mind, your body will follow." Simplistic, yes--but a heck of a lot more positive then the "blood brain barrier". Just what can anyone do about that, anyway?
It might work or it might not. I have been continuously on treatment for two years. My blood test numbers are better but I don't have the energy I had before treatment. It is a tradeoff. Side effects are not going to keep me from giving this my best shot. My feeling is that TRUST of each person's doctor is the most important thing. Also, my doctor is adamant that treatment has to be very individual. What works for one person in one situation may not work for someone else in the same situation. All he does is work with Hep C patients. The citing of references to Hep C experts is interesting to read,--if I feel like it,--but really I think having HOPE is a thousand times more important. The writers on this website are not in denial. But they want to express how they feel. As one nurse said to me--"Clear your mind, your body will follow." Simplistic, yes--but a heck of a lot more positive then the "blood brain barrier". Just what can anyone do about that, anyway?
A certain amount of those who respond to treatment DO have some histological benefit, but only as long as they remain on the interferon. Once interferon is discontinued, histology worsens over the next 1-2 years and even MAY increase.
So, yes, it is possible that non-responders can be maintained and receive a certain amount of histological improvement as long as they are on low dose monotherapy.
When you break it down, it looks like this:
Less than 50% of genotype 1's realize an SVR and of that some, but not all, have some histological benefit.
Those who do not respond, may have to be on interferon for a long time or intermittently for a long time, perhaps life (like insulin for diabetics) if they can tolerate the medications.
That is why, since most people do not progress or die of hepatitis C once they are diagnosed, it is really important to assess whether the risks (sides, adverse events, and possible non-responde) outweight the benefits. There has been at least one study out of the Harvard School of Public Health that concluded that the risks do outweigh the benefits for those (particulalry women) who have mild disease.
So, it isn't a matter of whether treatment is good, bad or ugly. It is a matter of optimal timing and the real likelihood that there are better options coming along for those who can wait. It might just be that those who can, should. This is one of the reasons Roche has been very careful about the 12 week PCR result. There AMY be less risk of being interferon dependent if those who probably are not going to respond discontinue if the 12 week PCR is still positive or has not revealed a 2 log drop in viral load.
I hope this helps.
thanbey
<a href="http://www.hcop.org">Hepatitis C Outreach Project</a>
So, yes, it is possible that non-responders can be maintained and receive a certain amount of histological improvement as long as they are on low dose monotherapy.
When you break it down, it looks like this:
Less than 50% of genotype 1's realize an SVR and of that some, but not all, have some histological benefit.
Those who do not respond, may have to be on interferon for a long time or intermittently for a long time, perhaps life (like insulin for diabetics) if they can tolerate the medications.
That is why, since most people do not progress or die of hepatitis C once they are diagnosed, it is really important to assess whether the risks (sides, adverse events, and possible non-responde) outweight the benefits. There has been at least one study out of the Harvard School of Public Health that concluded that the risks do outweigh the benefits for those (particulalry women) who have mild disease.
So, it isn't a matter of whether treatment is good, bad or ugly. It is a matter of optimal timing and the real likelihood that there are better options coming along for those who can wait. It might just be that those who can, should. This is one of the reasons Roche has been very careful about the 12 week PCR result. There AMY be less risk of being interferon dependent if those who probably are not going to respond discontinue if the 12 week PCR is still positive or has not revealed a 2 log drop in viral load.
I hope this helps.
thanbey
<a href="http://www.hcop.org">Hepatitis C Outreach Project</a>
I was in a study for people like you and obviously me. I started May 2002, fin'ed Oct 2002. Stupid or lucky me, I didn't realize that anyone would hesitate to tx after liver failure. And what a shame. After all, I cl'ed in only 18d's, fin 24wks-2b.
If I hadn't tx'ed, I'ld be dead.
You asked how I was. Well, I'm good b/have to watch for fluid build up. I'm looking for a good mild herbal diuritic. Also, the encephalitis-ammonia thing. Its just a balance of diet, exercise and rest. I feel much better, so good in fact, that I have to pace myself, b/c my energy is not boundless anymore.
I feel as if my liver has really improved since the hep c is gone. And I've learned not to add further insult to the liver's injuries. The longer I stay away from drugs and alcohol, the more I realize I no longer need or want them. And my liver thanks me, too. It's kinda like a pet now.
If I hadn't tx'ed, I'ld be dead.
You asked how I was. Well, I'm good b/have to watch for fluid build up. I'm looking for a good mild herbal diuritic. Also, the encephalitis-ammonia thing. Its just a balance of diet, exercise and rest. I feel much better, so good in fact, that I have to pace myself, b/c my energy is not boundless anymore.
I feel as if my liver has really improved since the hep c is gone. And I've learned not to add further insult to the liver's injuries. The longer I stay away from drugs and alcohol, the more I realize I no longer need or want them. And my liver thanks me, too. It's kinda like a pet now.
Edgar...what is your latest 12 week testing show? I know you said you didn't respond 1st round but how are you doing this time? I can only understand how you are feeling as all this reading of studies etc...can get you down big time. If you are SVR..Great...you know you did good but on the otherhand if you are a 1...and have relapse..then you are thinking..am I progressing things along on my liver? I'm like you as I get going and excited about beating this and then read more, do more reseach and then wonder if I'm doing the right thing. Its like a catch 22! My prayers are with you and I pray you don't give up at this stage of the game.
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