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Are there any benefits to taking treatment besides SVR?
Are there any potential benefits to taking treatment beside SVR? Because I have stage 4 cirrhosis, as a genotype 3 my chances of SVR are less, perhaps 50% at best.
The nurse at the liver clinic says treatment will give my liver a rest, so there will be some healing. But I've read that the viral load and AST and ALT are very high for some weeks after a relapse, so there is more damage being done to the liver at that time, and this counters the benefits of giving the liver a rest.
There are drugs which I've had to take during treatment which slightly damage liver tissue: antibiotics and antihistamines. Even Interferon and ribiviron can damage the liver. Also, I keep reading here and elsewhere that for many people there are lingering negative effects years after treatment. Plus there is the lower quality of life and stress during treatment, cost of the drugs and loss of time and/or productivity at work.
The one other benefit of treatment I can think of is the weight loss for overweight people, which can be good for the heart and reduce high blood pressure. The nurse at the liver clinic says I'll lose only muscle not fat so it's not really a benefit, but she's wrong. Now into my 14th week, I've already lost a roll of fat of my stomach.
Anybody know of any other benefits of treatment?
The nurse at the liver clinic says treatment will give my liver a rest, so there will be some healing. But I've read that the viral load and AST and ALT are very high for some weeks after a relapse, so there is more damage being done to the liver at that time, and this counters the benefits of giving the liver a rest.
There are drugs which I've had to take during treatment which slightly damage liver tissue: antibiotics and antihistamines. Even Interferon and ribiviron can damage the liver. Also, I keep reading here and elsewhere that for many people there are lingering negative effects years after treatment. Plus there is the lower quality of life and stress during treatment, cost of the drugs and loss of time and/or productivity at work.
The one other benefit of treatment I can think of is the weight loss for overweight people, which can be good for the heart and reduce high blood pressure. The nurse at the liver clinic says I'll lose only muscle not fat so it's not really a benefit, but she's wrong. Now into my 14th week, I've already lost a roll of fat of my stomach.
Anybody know of any other benefits of treatment?
During and after after treating my alt and ast were as low as they have been since 1987
There are cases where it takes the body a while to re balance it self.
If I can get rid of this awful bleeding under the skin from the cryoglobulinemia that will be worth a lot, actually I did not have it while on tx either, it was very painful
I hope you reach SVR
There are cases where it takes the body a while to re balance it self.
If I can get rid of this awful bleeding under the skin from the cryoglobulinemia that will be worth a lot, actually I did not have it while on tx either, it was very painful
I hope you reach SVR
The benefit for me is that I am 2 months post tx, UND and I get to live.
I also had other extra hepatic problems that my doc said could not be cured unless I got rid of the Hep C. I was tired all the time, had no motivation, no not depressed. In fact right now I am happier than I have been in a long time
I can see now that all the "senior members" here were right. Once people get to UND they don't come around to tell people how wonderful they are doing. Once in a while they will check in to let us know how they are but on a daily basis most people are coming here for help
I think, before you respond to someone negatively you should check their history. Hector is the best, he has ESLD and cancer, he does not need to come here to help us but he does and he does it in a kind and caring way.
I wish you the best
Dee
I also had other extra hepatic problems that my doc said could not be cured unless I got rid of the Hep C. I was tired all the time, had no motivation, no not depressed. In fact right now I am happier than I have been in a long time
I can see now that all the "senior members" here were right. Once people get to UND they don't come around to tell people how wonderful they are doing. Once in a while they will check in to let us know how they are but on a daily basis most people are coming here for help
I think, before you respond to someone negatively you should check their history. Hector is the best, he has ESLD and cancer, he does not need to come here to help us but he does and he does it in a kind and caring way.
I wish you the best
Dee
And Willy50
And Can do man
"It is an entirely different issue watching people who have cleared have their damage regress (such as jmjm was mentioned)."
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You are correct. I misinterpreted what you were asking.
I interpreted your question as meaning "are there any other benefits to treatment "in addition to SVR."
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"Jim is not a good example to use for someone that cirrhosis has set in. As he says he was stage 3 to maybe stage 4. A huge difference then us long term cirrhotics. "
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Yes, I see what you mean. Thanks.
And Can do man
"It is an entirely different issue watching people who have cleared have their damage regress (such as jmjm was mentioned)."
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You are correct. I misinterpreted what you were asking.
I interpreted your question as meaning "are there any other benefits to treatment "in addition to SVR."
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"Jim is not a good example to use for someone that cirrhosis has set in. As he says he was stage 3 to maybe stage 4. A huge difference then us long term cirrhotics. "
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Yes, I see what you mean. Thanks.
Perhaps a cirrhotic cannot regress back to a new liver, but it has been documented once the virus is no longer in the body, the liver heals itself remarkably if one continues to take care of himself. Yes, the link...I am riba-ed out and brain foggy, but I will post the links tomorrow to back up my claim.
I think the regression is dependent on a number of factors. The degree of healing is more individual depending on the stage of cirrhosis, the general health and the care one takes of her body.
I think the regression is dependent on a number of factors. The degree of healing is more individual depending on the stage of cirrhosis, the general health and the care one takes of her body.
"Hectors point was that unless one clears the virus, (as evidenced in the HALT-C study) there is little stage regression benefit, or other methods by which benefit was measured."
That's pretty much what I thought. On that point and most of the scientific facts I actually agree with Hector. The nurse was wrong - I think she was trained by the same strange nurse who gave me the other false information back in 2003 about it being impossible for anyone to clear the virus.
http://laircentre.com/nurses_walston.php
As far as I know, the only real benefit of treatment for someone who doesn't achieve SVR might be the weight loss, if one is well-prepared to take whatever steps are necessary to not regain it after treatment. My blood pressure is already lower than it's been in many years, and I think it's a result of my losing 22 pounds.
"It is an entirely different issue watching people who have cleared have their damage regress (such as jmjm was mentioned). Maybe I was the only one who may have miscontrued the original question about benefit due to TX, not exclusively benefit from treating only if one SVR's."
You're correct. I was asking if anyone knew of any benefits of treatment there might be for people who do NOT achieve SVR.
That's pretty much what I thought. On that point and most of the scientific facts I actually agree with Hector. The nurse was wrong - I think she was trained by the same strange nurse who gave me the other false information back in 2003 about it being impossible for anyone to clear the virus.
http://laircentre.com/nurses_walston.php
As far as I know, the only real benefit of treatment for someone who doesn't achieve SVR might be the weight loss, if one is well-prepared to take whatever steps are necessary to not regain it after treatment. My blood pressure is already lower than it's been in many years, and I think it's a result of my losing 22 pounds.
"It is an entirely different issue watching people who have cleared have their damage regress (such as jmjm was mentioned). Maybe I was the only one who may have miscontrued the original question about benefit due to TX, not exclusively benefit from treating only if one SVR's."
You're correct. I was asking if anyone knew of any benefits of treatment there might be for people who do NOT achieve SVR.
After I was told I had stage 4 cirrhosis back in 2004, I thought the chances were that I would not still be alive nearly ten years later. At that time I did a lot of reading about what I would experience at end-stage and what my options might be. Worrying about it had an unnecessarily negative impact on my life at that time, but eventually I came around to accepting it.
Let's not forget, people who don't die of unnatural causes eventually reach a condition very similar to end-stage cirrhosis anyways because of old age.
My grandfather was healthy and strong for nearly 90 years, but in the last year of his life, he became very pale, lost all his muscle, lost his resistance to infection, and at the very end during the weeks before his death couldn't even get out of bed. He had no cirrhosis, cancer or anything other disease - it was just old age.
My friend's father, who recently was admitted to a nursing home at about age 90, never had cirrhosis or Hep C, or other serious illness. Yet he looks very similar to someone I've seen who is about age 55 and has end-stage cirrhosis.
What having Hep C and stage 4 cirrhosis really means is that I'll be in that condition at an earlier age than most people. But I'm luckier than all the people who died from accidents and illnesses in their childhood, teens, 20s, 30s and 40s.
And as a wise man once said "in the long run we are all dead anyway".
Let's not forget, people who don't die of unnatural causes eventually reach a condition very similar to end-stage cirrhosis anyways because of old age.
My grandfather was healthy and strong for nearly 90 years, but in the last year of his life, he became very pale, lost all his muscle, lost his resistance to infection, and at the very end during the weeks before his death couldn't even get out of bed. He had no cirrhosis, cancer or anything other disease - it was just old age.
My friend's father, who recently was admitted to a nursing home at about age 90, never had cirrhosis or Hep C, or other serious illness. Yet he looks very similar to someone I've seen who is about age 55 and has end-stage cirrhosis.
What having Hep C and stage 4 cirrhosis really means is that I'll be in that condition at an earlier age than most people. But I'm luckier than all the people who died from accidents and illnesses in their childhood, teens, 20s, 30s and 40s.
And as a wise man once said "in the long run we are all dead anyway".
No, that's true. And you have a good point, we are all adults, and most of us, older adults. It took me a long time to grow up, and finally break my denial, and face my Hep C.
When I see other people around here, and at my irl support group, going thru this treatment, in their late twenties, early thirties, etc, I really admire them for that.
By the time I was in my late forties, I had already lived thru quite a bit of tragedy, so I feel like I am better equipt, to deal with the TX~
And I agree with Wiil, we do usually keep it pretty positive, and realistic, around here ; )
When I see other people around here, and at my irl support group, going thru this treatment, in their late twenties, early thirties, etc, I really admire them for that.
By the time I was in my late forties, I had already lived thru quite a bit of tragedy, so I feel like I am better equipt, to deal with the TX~
And I agree with Wiil, we do usually keep it pretty positive, and realistic, around here ; )
Sorry if you consider experience and knowledge depressing but I am just stating what I know from my own experience of 4-5 living with hepatitis caused cirrhosis, End-Stage Liver Disease and liver cancer and am now waiting for a transplant in order to survive before the cancer becomes unmanageable..
You said you had cirrhosis and I thought you might want some info so you don't end up like me as I believe cirrhosis is a serious disease.
Your free to believe or not believe what I have posted.
For the best source of knowledge and experience talk to a hepatologist who knows your health condition(S) and who works every day with hepatitis C caused cirrhosis.
hector
You said you had cirrhosis and I thought you might want some info so you don't end up like me as I believe cirrhosis is a serious disease.
Your free to believe or not believe what I have posted.
For the best source of knowledge and experience talk to a hepatologist who knows your health condition(S) and who works every day with hepatitis C caused cirrhosis.
hector
Although of course we should face reality like adults, we should not dwell on the negative so much we give up hope
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Have never seen evidence of that here...actually just the opposite.
Best..
Will
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Have never seen evidence of that here...actually just the opposite.
Best..
Will
I agree it's not a good idea to sugar-coat the truth. But at the same time, it's not a good idea to dwell too much on what's most depressing, especially during treatment.
I've come across a lot of contradictory information, the best example being the nurse in 2003 saying I could never get rid of the Hep C virus, and the doctor saying I that it might be possible. I've seen studies that show pegatron has a better success rate than pegasys, other studies that show the pegasus SVR rate as being better that pegatron.
When I come to this forum and ask questions, I'm really just trying to clear up the ambiguity and find out the real facts, so I can better deal with everything. I've found some useful information here (about hydroxyzine for example).
Although of course we should face reality like adults, we should not dwell on the negative so much we give up hope.
I've come across a lot of contradictory information, the best example being the nurse in 2003 saying I could never get rid of the Hep C virus, and the doctor saying I that it might be possible. I've seen studies that show pegatron has a better success rate than pegasys, other studies that show the pegasus SVR rate as being better that pegatron.
When I come to this forum and ask questions, I'm really just trying to clear up the ambiguity and find out the real facts, so I can better deal with everything. I've found some useful information here (about hydroxyzine for example).
Although of course we should face reality like adults, we should not dwell on the negative so much we give up hope.
Hmmm, well...it's hard to say what stage I was really at, because my biopsy said stage 2, but then again, my platelets suddenly dropped, as did my WBC and RBC, a couple months before I went into treatment, so my Doctor and I both thought my liver was going "down hill" quickly.
I dont think the liver biopsy is accurate, because they only looked at my liver in 4 places, and each part of the liver can be different, although Hep C tends to be more umiform, then other forms of cirrhosis.
I was really sick, when I decided to go into treatment, tons of symptoms, etc. And now I'm even more sick, now that I'm in treatment. And I'm sure I wont feel so great, right after treatment either....so the whole thing is a "Journey", and "unpleasant" doesn't nearly describe it!
I had these terrible dark circles, as soon as my platelets dropped, and I still have them. I pretty much look like a zombie, or some kind of hard-core addict now, so It's embarrassing for me to go out in public, but all my friends have been pretty nice about not saying anything about my chalky face, circles, haggard look!
I dont think the liver biopsy is accurate, because they only looked at my liver in 4 places, and each part of the liver can be different, although Hep C tends to be more umiform, then other forms of cirrhosis.
I was really sick, when I decided to go into treatment, tons of symptoms, etc. And now I'm even more sick, now that I'm in treatment. And I'm sure I wont feel so great, right after treatment either....so the whole thing is a "Journey", and "unpleasant" doesn't nearly describe it!
I had these terrible dark circles, as soon as my platelets dropped, and I still have them. I pretty much look like a zombie, or some kind of hard-core addict now, so It's embarrassing for me to go out in public, but all my friends have been pretty nice about not saying anything about my chalky face, circles, haggard look!
Yes Hector is spot on with advice, theres no reason for people to sugar coat things here as were all adults and well the facts are what they are. Its better knowing up front and dealing with it then to live in a fanasty world thinking things that are not true.
"Although Hector certainly doesn't need any defending, it is my understanding that he is now experiencing ESLD and is awaiting a liver transplant. He is just telling it like it is, giving you this information for your own good, not trying to scare you."
Okay, I didn't know that he's at ESLD, that explains it.
Okay, I didn't know that he's at ESLD, that explains it.
Jim is not a good example to use for someone that cirrhosis has set in. As he says he was stage 3 to maybe stage 4. A huge difference then us long term cirrhotics.
"Just wanted to add, being I have cirrhosis and 2 years SVR I still have to go get screened for liver cancer twice a year as well as every other cirrhotic person. Now why if our livers reverse back even a couple of stages? People with no damage or even stage 3 doesn't have to."
Perhaps within another couple of years it will reverse back.
The cirrhosis improving after successful treatment may depend on other factors, such as alcohol consumption, diet, etc. (of course, many alcoholics who do not have Hep C have cirrhosis).
I think the people who go to a better stage after SVR must be living a healthy lifestyle (eating right and avoiding alcohol).
However, at stage 4 I can't imagine going back to stage 1, although stage 3 is possible.
Perhaps within another couple of years it will reverse back.
The cirrhosis improving after successful treatment may depend on other factors, such as alcohol consumption, diet, etc. (of course, many alcoholics who do not have Hep C have cirrhosis).
I think the people who go to a better stage after SVR must be living a healthy lifestyle (eating right and avoiding alcohol).
However, at stage 4 I can't imagine going back to stage 1, although stage 3 is possible.
They had trials to see if maintenance therapy would help once someone was und, did it do any good and help reverse the damage? The answer is no. If your was healing after only 6 months of treatment being und then a low dose maintenance for a couple years would have worked wonders.
Although Hector certainly doesn't need any defending, it is my understanding that he is now experiencing ESLD and is awaiting a liver transplant. He is just telling it like it is, giving you this information for your own good, not trying to scare you. When Hector posts a response, I read carefully, since his advice is usually very thorough and spot on. There are many knowledgable members on this forum that I hold in very high regard, and Hector is at the top of my list.
Hope your tx goes well and you visit this forum often.
Hope your tx goes well and you visit this forum often.
I think it is somewhat true that it's good for the liver to have several months without fighting the virus.
However, I think the very high viral load at the time relapse may undo any good that was done for the liver (the virus had been held in check by the treatment and then it takes some time for your immunity system to get used to not having the interferon and bring it back down to pre-treatment levels).
However, I think the very high viral load at the time relapse may undo any good that was done for the liver (the virus had been held in check by the treatment and then it takes some time for your immunity system to get used to not having the interferon and bring it back down to pre-treatment levels).
Just wanted to add, being I have cirrhosis and 2 years SVR I still have to go get screened for liver cancer twice a year as well as every other cirrhotic person. Now why if our livers reverse back even a couple of stages? People with no damage or even stage 3 doesn't have to.
"The conclusion was there was no benefit. This is well know in hepatology circles."
Many people in this forum have said that their livers have regenerated after successful treatment. Some say they've gone from stage 3 to stage 2 or 1 cirrhosis.
"Antibiotics and antihistamines don't damage the liver in any way unless there is something toxic in the antihistamines."
Really? Then why is liver damage is listed as among side-effect of many antibiotics.
"The real worry is what you will go through to get listed and then get a liver transplant and have to take medicines for the rest of your life. You will still have to get rid of your hepatitis C and you will be pron to infections of all sorts and will have a high increase in the chances of getting cancer after transplant in the following years. And this is just the tip of the iceberg that is End-Stage Liver Disease and liver transplant."
We are all well aware of this. Very depressing - you're not just trying to scare people by bringing it up are you, Hector? But I fear the end-stage much more than I fear death, so I've already made a decision several years ago about what I will do.
"When you develop End-Stage Liver Disease you will become malnourished and lose your muscle mass. Weight lose is good as is any other thing you can do to stay in shape. Being in shape will not slow the progression of your liver disease. The hepatitis C virus replicated a billion or many its a trillion times in one day. Each time it replicates it destroys healthy liver cells."
We already know this, Hector. I've seen people at end-stage - very depressing. What's the point of you bringing it up?
Many people in this forum have said that their livers have regenerated after successful treatment. Some say they've gone from stage 3 to stage 2 or 1 cirrhosis.
"Antibiotics and antihistamines don't damage the liver in any way unless there is something toxic in the antihistamines."
Really? Then why is liver damage is listed as among side-effect of many antibiotics.
"The real worry is what you will go through to get listed and then get a liver transplant and have to take medicines for the rest of your life. You will still have to get rid of your hepatitis C and you will be pron to infections of all sorts and will have a high increase in the chances of getting cancer after transplant in the following years. And this is just the tip of the iceberg that is End-Stage Liver Disease and liver transplant."
We are all well aware of this. Very depressing - you're not just trying to scare people by bringing it up are you, Hector? But I fear the end-stage much more than I fear death, so I've already made a decision several years ago about what I will do.
"When you develop End-Stage Liver Disease you will become malnourished and lose your muscle mass. Weight lose is good as is any other thing you can do to stay in shape. Being in shape will not slow the progression of your liver disease. The hepatitis C virus replicated a billion or many its a trillion times in one day. Each time it replicates it destroys healthy liver cells."
We already know this, Hector. I've seen people at end-stage - very depressing. What's the point of you bringing it up?
Well i've read here that while treating your giving your liver a break. Its sounds good and somewhat true, although a 6 month treatment time in the long haul of things isn't really much. Being your cirrhotic you need to get rid of the hep altogether. Even then how much healing a cirrhotic liver can do is still questioned and i sure don't buy this notion that a true cirrhotic can reverse back to brand new or even close to it.
The main thing is the damage will stop, I am now SVR post treatment 2 years and i'm just now feeling much better with more energy and thats good enough for me....... Take care.
The main thing is the damage will stop, I am now SVR post treatment 2 years and i'm just now feeling much better with more energy and thats good enough for me....... Take care.
My hepatologist told me the same. Once you are und, the liver is no longer fighting the virus and begins to regenerate. Some people who have relapsed after tx have still improved the stage of their liver fibrosis.
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Here is a quote from the tail end of the link;
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http://www.nejm.org/doi/full/10.1056/NEJMc082747
"Although Koretz and Gluud contend that decompensated cirrhosis will never develop in most untreated patients with chronic hepatitis C, in our study, progression occurred in an alarming one third of patients with advanced fibrosis who were followed for 3.5 years.
++++++++++++++++++++++++++++++++++
As is often the case w/ HCV, there is not always crystal clarity on what we can expect, but if the quote is true (I've no reason to doubt it) it is one of those little nuggets that helps us put things in perspective.
I will also add, it appears that one might easily confuse the "benefits" of treating.
Hectors point was that unless one clears the virus, (as evidenced in the HALT-C study) there is little stage regression benefit, or other methods by which benefit was measured.
It is an entirely different issue watching people who have cleared have their damage regress (such as jmjm was mentioned). Maybe I was the only one who may have miscontrued the original question about benefit due to TX, not exclusively benefit from treating only if one SVR's.
Frankly, I think we all change with time due to aging, we may improve diet or stop smoking or take up exercise as we get older or sicker, and so I think some things could get better.... but....changes would be hard to prove.
The opposite is also true, with TX many people become less active and some of the results of TX could be in part due to becoming more sedentary for an extended period. A doctor friend of mine tells me that for every day one is in bed, it takes a 7 to recuperate. When one is sick or anemic or on medical leave for some time it could contribute to some of the issues post TX. Naturally, one would blame the treatment, but it could be due not from the cause of drugs, more the effects of a more sedentary life for an extended period.
Slightly back to the original question, but the benefits? If one were to SVR it could head off contracting some other extra-hepatic issues that are "associated" with having HCV. There is a list of them; inflamatory issues, immune issues and depression/ brain fog issues are also often associated with HCV.
I thought I would throw a little into the mix.
willy