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SVR , Viral Persistence, Important Articles for All
I certainly do not want to be a 'downer', or undercut the importance of achieving the currently accepted 'SVR', but the three links below provide some up to date reading about the little understood phenomenon of HCV virus remaining long after SVR is achieved. From what I see in the various research articles, there seems to be evidence that the 'hidden' HCV is actually replicating virus in most cases, and seems to exist in isolated blood or organ compartments...PBMC, Lymphocytes, etc.
This is the leading edge of a wave of information that I believe will continue to shape out thinking about HCV, and our therapies. This may also explain the ongoing symptoms many experience after SVR, which may be permanent in some cases. Other questions to be explored will include: Does HCV infect the central nervous system? Does it infect connective tissue in joints? the brain? And, how many of these are eradicated of the virus after successful tx (SVR)?
It does appear that SVR seems to permanently (we hope) get rid of HCV from the blood and liver, which is the real life saver. So we have much to cheer about. But lots more work to do for a full and total cure, it seems. I would love to think the research is wrong....but there is too much, from too many teams at this point, for it to be faulty, I fear.
See the links, and form your own conclusions.
http://www.hcvadvocate.org/news/newsLetter/2005/advocate0305.html#1
http://www.natap.org/2005/HCV/010305_04.htm
http://www.hivandhepatitis.com/hep_c/news/2005/010305_b.html
DoubleDose
This is the leading edge of a wave of information that I believe will continue to shape out thinking about HCV, and our therapies. This may also explain the ongoing symptoms many experience after SVR, which may be permanent in some cases. Other questions to be explored will include: Does HCV infect the central nervous system? Does it infect connective tissue in joints? the brain? And, how many of these are eradicated of the virus after successful tx (SVR)?
It does appear that SVR seems to permanently (we hope) get rid of HCV from the blood and liver, which is the real life saver. So we have much to cheer about. But lots more work to do for a full and total cure, it seems. I would love to think the research is wrong....but there is too much, from too many teams at this point, for it to be faulty, I fear.
See the links, and form your own conclusions.
http://www.hcvadvocate.org/news/newsLetter/2005/advocate0305.html#1
http://www.natap.org/2005/HCV/010305_04.htm
http://www.hivandhepatitis.com/hep_c/news/2005/010305_b.html
DoubleDose
Just wanted to compliment you all on such a beautifully worded, informative thread. Having known some people who, unfortunately, were not able to achieve svr and went on to be very sick and/or die, I will be very glad indeed to achieve svr, with all its limitations. As was said earlier, hopefully it will buy me time till these new drugs (and there seems to be so many in trial with promising results!) come along in the near future which are more effective. I also know more than a few people who are doing quite well living with the disease who are in their 60's and 70's, they were non-responders or had very low liver damage.(Most of them I know to be doing complementary therapies.) I think these new findings, though dissapointing on some level, are very important for us as a community to know about. Too many people achieve svr and go on to resume old quasi-destructive habits... happened to talk to one just the other day. Now thinking of some subtle way of showing him these articles. Thanks so much for posting these links. And for all the great responses.
you may want to reaf the url I posted, it links to the studies that found no hcv in SVRs years later.
Thankyou DD for the info...having recently achieved the goal, I still occasionally think about relapse and the above mentioned issues. I agree with all of your comments and continually give thanks to God for giving me the strength to get through this...and as commented, there are many truths that we don't really want to hear and we have many more issues in life to deal with. For me, this ordeal has opened up my eyes and helped me to realize what is important. I,too, have changed my lifestyle and strive for a more healthy, compassionate and caring life. I feel that my faith and beliefs have gotten stronger and I give thanks for the many blessings that we all are given. The three of you have all stated perfectly alot of my thoughts (I couldn't have said it any better)It has certainly been a tough fight but worth it! To me, "Attitude is everything" and it is important to always look forward and not dwell on the struggle...(and give support where possible, this forum has given a wealth of information to me and others!)
.....Blessings .....mike
.....Blessings .....mike
these are the same studies I read a while back and this one
http://www.natap.org/2005/HCV/010505_02.htm
is from the same site the second link is.
I would like to know the details of the so called SVRs in those studies, what was the PCR sensitivity used during and post tx on those individuals? The studies follow up subjects claim to have been SVR over 5 yrs ago, and we know how sensitive those PCRs used to be in those days. I am not disputing that something might remain, I want to know if these folks were truly SVR or if their vl dropped so low to be undetectable by those PCRs, and somewhat kept at that low level by their immune systems. It might be that their bodies after tx, are managing the residual low vl. I remember snook posting that he was negative for a couple of years, and before his tx, it was less than 10,000. I doubt that he was SVR during the negative yrs.
I just want to know what tests were used on the subjects early on.
ONe thing common in the studies above is the fact that no increase in relapses are seen among them. 4% relapsed over the course of 6 yrs, and later it is stated that 4% had detectable hcv in their livers 24 wks after the end of therapy. they were not svr in my opinion.
I propose that we get a biopsy of the synovial tissue in our joints and check for hcv, also a PCR on the liver and peripheral blood, and if it is negative, consider it gone.
I keep reading that these findings are not clear in their significance as far as relapse goes, what we want to know is whether it affects at a different level if we have it in other tissues.
Hepatitis is cured once there is no hcv in the liver. whether hcv is entirely gone from every cell in our body is another issue. As I said before though, I ain't worry about it until they find it still lingering in my next bx.
LET"S all get pcrs in whatever tissue we get removed in non related HCV procedures, how much would it be?
Or, let's participate in a more recent study where more sensitive PCRs were used to determine SVR, and let them follow us for 5 yrs. I am game.
http://www.natap.org/2005/HCV/010505_02.htm
is from the same site the second link is.
I would like to know the details of the so called SVRs in those studies, what was the PCR sensitivity used during and post tx on those individuals? The studies follow up subjects claim to have been SVR over 5 yrs ago, and we know how sensitive those PCRs used to be in those days. I am not disputing that something might remain, I want to know if these folks were truly SVR or if their vl dropped so low to be undetectable by those PCRs, and somewhat kept at that low level by their immune systems. It might be that their bodies after tx, are managing the residual low vl. I remember snook posting that he was negative for a couple of years, and before his tx, it was less than 10,000. I doubt that he was SVR during the negative yrs.
I just want to know what tests were used on the subjects early on.
ONe thing common in the studies above is the fact that no increase in relapses are seen among them. 4% relapsed over the course of 6 yrs, and later it is stated that 4% had detectable hcv in their livers 24 wks after the end of therapy. they were not svr in my opinion.
I propose that we get a biopsy of the synovial tissue in our joints and check for hcv, also a PCR on the liver and peripheral blood, and if it is negative, consider it gone.
I keep reading that these findings are not clear in their significance as far as relapse goes, what we want to know is whether it affects at a different level if we have it in other tissues.
Hepatitis is cured once there is no hcv in the liver. whether hcv is entirely gone from every cell in our body is another issue. As I said before though, I ain't worry about it until they find it still lingering in my next bx.
LET"S all get pcrs in whatever tissue we get removed in non related HCV procedures, how much would it be?
Or, let's participate in a more recent study where more sensitive PCRs were used to determine SVR, and let them follow us for 5 yrs. I am game.
SVR may not equate with an ABSOLUTE CURE but neither does a migraine or many other chronic diseases. SVR is a concept that will be modified continously as better treatments become available in future years. I think we must put things in a proper perspective & I rather have a residual HCV infection than a full blown disease. If we can delay the replication of this virus until better meds come along, that in itself is a major acomplishment considering that HCV was largely unknown prior to 1990. With this said, I must emphasize that the above mentioned info is intriguing. I'm all too aware that Tx results that are 9-10 years old are very preliminary & many concepts or perceptions regarding HCV-SVR will change over the next few years.
Best luck to all,
Ben
PS-Special thanks to DD for being persistent.
I've always guessed that if I am fortunate enough to achieve SVR that it would probably be like the "chicken pox - shingles" thing. Who knows if it will come back or if the immune system has found a hidden weakness and holds it at bay. Possibly if one's immune system becomes weakened it will be more likely to comeback. Avoiding the toxins and pollutions that riddle society ( which do weaken the immune system )as much as possible would be a very good thing.
I agree with Artgal about taking good care of yourself ( organic food and enough rest) plus having a purpose beyond oneself.
If there is one thing that HCV has taught me is that life is short whether I achieve SVR or not.
Has anybody studied those who naturally achieve SVR, how many years have they been clear? Not that that would prove anything about a tx SVR.
I agree with Artgal about taking good care of yourself ( organic food and enough rest) plus having a purpose beyond oneself.
If there is one thing that HCV has taught me is that life is short whether I achieve SVR or not.
Has anybody studied those who naturally achieve SVR, how many years have they been clear? Not that that would prove anything about a tx SVR.
I agree wholeheartedly with everything you said! I also am tremendously thankful for the SVR that I achieved, and also am in the stage 3, bordering on high stage 2 category. I am hoping that the next five years of recovery will bring one additional stage of fibrosis reversal. I would be very happy with low-end stage 2.
I think the issues that we (SVR's) will face from here on out will have to do with ongoing 'autoimmunity', which may cause the commonly experienced symptoms of fatigue, arthralgia, depression, reactivity to sun, stress, chemicals, etc.
These are the issues that MAY be tied to 'viral persistence', and the researchers mention ongoing cellular and humoral immunity due to the isolated replicating virus. Maybe finding ways to eradicate the remaining 'trigger' virus would allow our immune systems to finally 'relax' and stop the constant fight to contain a virus....and thus moderate or totally mitigate our 'autoimmune-like' symptoms. (Those that have them)
Note, they do mention that two individuals tested seemed to have NO HCV remnants, or virus in ANY of the various compartments. That gives me hope that the whole thing CAN be eradicated, potentially, in everybody. We just need to find medications that will do it without making us endure any additional agony. I, for one, am happy to be well past the miserable days (and years!) of interferon therapy. Thank God it worked, but I wouldn't want to go there again for anything in the world!
Best wishes to you. Comments from the board are welcomed.
DoubleDose
I think the issues that we (SVR's) will face from here on out will have to do with ongoing 'autoimmunity', which may cause the commonly experienced symptoms of fatigue, arthralgia, depression, reactivity to sun, stress, chemicals, etc.
These are the issues that MAY be tied to 'viral persistence', and the researchers mention ongoing cellular and humoral immunity due to the isolated replicating virus. Maybe finding ways to eradicate the remaining 'trigger' virus would allow our immune systems to finally 'relax' and stop the constant fight to contain a virus....and thus moderate or totally mitigate our 'autoimmune-like' symptoms. (Those that have them)
Note, they do mention that two individuals tested seemed to have NO HCV remnants, or virus in ANY of the various compartments. That gives me hope that the whole thing CAN be eradicated, potentially, in everybody. We just need to find medications that will do it without making us endure any additional agony. I, for one, am happy to be well past the miserable days (and years!) of interferon therapy. Thank God it worked, but I wouldn't want to go there again for anything in the world!
Best wishes to you. Comments from the board are welcomed.
DoubleDose
Thank you for such an informative series of articles. You are among several on this forum that I can count on to provide the most up to date and cutting edge information regarding Hep C.
There are many "things" lurking in our bodies, I am sure. What this information says to me is that when I achieve SVR (in the very near future, I hope), I will need to continue to take care of my body through diet and exercise and work to deal with the (inevitable) life stresses in as positive ways as possible. I'll need to maintain an open and life-embracing attitude, share as much love, kindness and compassion as I have to give with others. This may not prevent Hep C or other illnesses/diseases from surfacing but hopefully it will help as much as we can help anything that goes on in our world.
As Rev said in his post, medical professionals have assumed this to be true for a long time. I had this discussion last week with my doctor -- we will all most likely have some of this virus somewhere in our bodies (viruses are extremely tricky) and certain things may cause it to surface again at some point. BUT hopefully newer and better drugs will be around to cope with it, if and when it does.
Again, thanks for the post.
There are many "things" lurking in our bodies, I am sure. What this information says to me is that when I achieve SVR (in the very near future, I hope), I will need to continue to take care of my body through diet and exercise and work to deal with the (inevitable) life stresses in as positive ways as possible. I'll need to maintain an open and life-embracing attitude, share as much love, kindness and compassion as I have to give with others. This may not prevent Hep C or other illnesses/diseases from surfacing but hopefully it will help as much as we can help anything that goes on in our world.
As Rev said in his post, medical professionals have assumed this to be true for a long time. I had this discussion last week with my doctor -- we will all most likely have some of this virus somewhere in our bodies (viruses are extremely tricky) and certain things may cause it to surface again at some point. BUT hopefully newer and better drugs will be around to cope with it, if and when it does.
Again, thanks for the post.
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