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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?
Best Answer
No, she just said giving the liver a rest with the liver during treatment is beneficial, even without SVR.
I'm aware that if I clear the virus, my liver can regenerate in the years after treatment, and I will probably live longer.
I'm aware that if I clear the virus, my liver can regenerate in the years after treatment, and I will probably live longer.
No. I was on rebetron in 2003, but the side effects were too severe for me to be able to work, partly due to the hot weather that July so I stopped treatment for a time, and then started again.
And there was another factor in my stopping treatment:
I was UND at 4 weeks that year, but just before I stopped treatment, a nurse at the clinic said it's impossible to "clear" or "be cured" of the virus and it could come back at any time in the years to come.
I became very confused. The only reason I started treatment was because I was told by a top liver specialist Dr. Frank Anderson (who is now retired) and another doctor and nurse at the Center that being genotype 3, I'd have a chance of "getting rid of" or "clearing" the virus if I went through treatment.
Unfortunately, everybody at the clinic was on leave or on vacation that July, except for one nurse who contradicted what the others had said and told me it is impossible to get rid of the virus regardless of genotype. I asked her what then does "SVR" mean, and she replied she is "scientific" and the fact is that even if it's undetectable 6 months after treatment, the virus will always be there, it's just suppressed but could flare up at any time.
When Dr. Anderson returned in August, I asked him about what she had said, and he said she is wrong and he would have a talk with her. He said if it's UND several months after the end of treatment it does not flare up, although there have been some instances of drug addicts being re-infected.
And there was another factor in my stopping treatment:
I was UND at 4 weeks that year, but just before I stopped treatment, a nurse at the clinic said it's impossible to "clear" or "be cured" of the virus and it could come back at any time in the years to come.
I became very confused. The only reason I started treatment was because I was told by a top liver specialist Dr. Frank Anderson (who is now retired) and another doctor and nurse at the Center that being genotype 3, I'd have a chance of "getting rid of" or "clearing" the virus if I went through treatment.
Unfortunately, everybody at the clinic was on leave or on vacation that July, except for one nurse who contradicted what the others had said and told me it is impossible to get rid of the virus regardless of genotype. I asked her what then does "SVR" mean, and she replied she is "scientific" and the fact is that even if it's undetectable 6 months after treatment, the virus will always be there, it's just suppressed but could flare up at any time.
When Dr. Anderson returned in August, I asked him about what she had said, and he said she is wrong and he would have a talk with her. He said if it's UND several months after the end of treatment it does not flare up, although there have been some instances of drug addicts being re-infected.
jmjm530 posted last month. He is 6 yrs post treatment (SVR). I will repost his post so you can read it. Maybe his post will give you encouragement:
By jmjm530| Mar 15, 2012
"Just got my six year post tx, and it was 4.5kPa. Apparently, that’s pretty good and normal (stage 0-1) as the tech said it was lower than his scan-- and he’s never had any sort of liver disease!
My previous scans were in 2005, mid treatment (9.5 kPa) and in 2006, six months post tx (8 kPa). These correspond with stages (2-3), and early stage 2, respectively -- at least according to the correlations at the time of the initial Fibroscan trials.
Pre-Treatment I was staged at either 3-4 or 2-3 (depending on who read the slides) via liver biopsy.
It’s funny, because I almost passed on the Fibroscan, as it’s been so many years since SVR, and regardless of results, there wasn’t really anything I could (or would want to) do. Thankfully, the results were good. Just wish the rest of me was that normal. LOL.
A little hazy background, as it’s been awhile, and I couldn’t locate my exact notes:
Stated tx in early 2005. Double Dosed Peg for ther first 4? or so weeks, on high dose Ribavirin strategy that ended me in the ER within a few weeks of starting tx. After a few days off ribavirin, I then again continued on high dose ribavirin (with Procrit) for the duration of my 60 week treatment. Tons of sfx. It was not a pleasant experience.
I had a two log drop within a week or two (viral load was tested weekly) and UND within 4-6 week, can’t remember. In any event, it was considered an RVR. I was still told to tx for 60 weeks, based on both age – over 50 – and advanced fibrosis, as my only biopsy reading at that time was stage 3-4.
As those who have read some of my posts, I had very mixed feelings about tx for those with little or no liver damage – but that said, it certainly appears that tx can reverse fibrosis/cirrhosis, not only based on what I’ve read, but also on my own scan results.
To any of my old friends still here, you’re always in my heart, and I hope the very best for each and every one of you."
"-- Jim"
By jmjm530| Mar 15, 2012
"Just got my six year post tx, and it was 4.5kPa. Apparently, that’s pretty good and normal (stage 0-1) as the tech said it was lower than his scan-- and he’s never had any sort of liver disease!
My previous scans were in 2005, mid treatment (9.5 kPa) and in 2006, six months post tx (8 kPa). These correspond with stages (2-3), and early stage 2, respectively -- at least according to the correlations at the time of the initial Fibroscan trials.
Pre-Treatment I was staged at either 3-4 or 2-3 (depending on who read the slides) via liver biopsy.
It’s funny, because I almost passed on the Fibroscan, as it’s been so many years since SVR, and regardless of results, there wasn’t really anything I could (or would want to) do. Thankfully, the results were good. Just wish the rest of me was that normal. LOL.
A little hazy background, as it’s been awhile, and I couldn’t locate my exact notes:
Stated tx in early 2005. Double Dosed Peg for ther first 4? or so weeks, on high dose Ribavirin strategy that ended me in the ER within a few weeks of starting tx. After a few days off ribavirin, I then again continued on high dose ribavirin (with Procrit) for the duration of my 60 week treatment. Tons of sfx. It was not a pleasant experience.
I had a two log drop within a week or two (viral load was tested weekly) and UND within 4-6 week, can’t remember. In any event, it was considered an RVR. I was still told to tx for 60 weeks, based on both age – over 50 – and advanced fibrosis, as my only biopsy reading at that time was stage 3-4.
As those who have read some of my posts, I had very mixed feelings about tx for those with little or no liver damage – but that said, it certainly appears that tx can reverse fibrosis/cirrhosis, not only based on what I’ve read, but also on my own scan results.
To any of my old friends still here, you’re always in my heart, and I hope the very best for each and every one of you."
"-- Jim"
Does the nurse mean your liver will not regenerate itself that much in the overall scheme of things? If so, does that rule out longevity? Longevity is the only other long-term benefit I can think of. That, and maybe quality of life or peace of mind for those who clear the virus. I rather think that applies to those who know they have the virus since I understand lots of folks who have HCV live full lives without ever knowing they had it.
.
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Hmmm, and this is your first time treating? I guess we are all gonna worry, until they give us that final post treatment blood test, 6 months after treatment, and even a little worried, until we get that 1 yr test!
But I go to a support group, and plenty here have beencured, for years, and plenty more getting cured.
Did your ALT/AST go back to normal? That always comforts me, when I see that, on the labs~
But I go to a support group, and plenty here have beencured, for years, and plenty more getting cured.
Did your ALT/AST go back to normal? That always comforts me, when I see that, on the labs~
The HALT-C Trial was a multi-center, randomized controlled study designed to determine if continuing interferon long term over several years will suppress the Hepatitis C virus, prevent progression to cirrhosis, prevent liver cancer and reduce the need for liver transplantation.
The conclusion was there was no benefit. This is well know in hepatology circles.
"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 is no "rest" for the liver until you are no longer living.
Antibiotics and antihistamines don't damage the liver in any way unless there is something toxic in the antihistamines.
"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 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.
"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."
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. Better in shape is good for everyone and especially people that undergo major surgery such as a transplant.
It seems you are still compensated. Your liver could stay compensated for many years and then when you decompensate it could be years before you are ill enough to get a transplant. Use your time wisely and try treating your hepatitis C before you can no longer treat. 50% is good odds better then what most people with genotype 1 had until last Summer. If it is a choice between 50% and needing a life saving transplant it is really a no brainier.
You should be talking to a hepatologist and getting advice from her or him. This nurse has told you two things that are flat out wrong and show no understanding of the basics of liver disease. I wouldn't recommend taking her opinion on anything that could involved your very life.
Good luck!
hector
The conclusion was there was no benefit. This is well know in hepatology circles.
"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 is no "rest" for the liver until you are no longer living.
Antibiotics and antihistamines don't damage the liver in any way unless there is something toxic in the antihistamines.
"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 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.
"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."
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. Better in shape is good for everyone and especially people that undergo major surgery such as a transplant.
It seems you are still compensated. Your liver could stay compensated for many years and then when you decompensate it could be years before you are ill enough to get a transplant. Use your time wisely and try treating your hepatitis C before you can no longer treat. 50% is good odds better then what most people with genotype 1 had until last Summer. If it is a choice between 50% and needing a life saving transplant it is really a no brainier.
You should be talking to a hepatologist and getting advice from her or him. This nurse has told you two things that are flat out wrong and show no understanding of the basics of liver disease. I wouldn't recommend taking her opinion on anything that could involved your very life.
Good luck!
hector
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Here is a quote from the tail end of the link;
+++++++++++++++++++++++++++++++++++++++++
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