As to your statement that "<i>...it is still very very unlikely you would have HCV begin replicating again after achieving SVR.</i>", the researchers here state flat-out that: "<i>... HCV persisted and replicated in the livers and peripheral blood mononuclear cells of most sustained responders. Thus, these patients did not experience HCV infection clearance, despite apparent clinical disease resolution.</i>"
And, as to whether "<i>...unless we are in this situation or have these special circumstances, dealing with some other illness and/or treatments, this research does not impact someone who has treated their HCV and achieved SVR.</i>", this paper this points directly to at least one area of potential concern for post-SVRs: "<i>Liver necroinflammation was still present in the posttreatment liver biopsy specimens of 15 patients, and fibrosis was present in 7, although liver damage improved in all but 2 patients.</i>".
Though questions remain as to what extent chronic ongoing (albeit low-level) liver necroinflammation may have in terms of the potential for histological damage (e.g. - fibrosis development, etc), given the choice - I would postulate that most SVRs (and their doctors) would prefer a situation without chronic necroinflammation continuing forward for the rest of their lives.
Other areas/questions of concern:
- what might an ongoing chronic HCV infection w/ associated necroinflammation mean in terms of the potential for an increased risk of HCC over time?
- what might an ongoing chronic HCV infection mean in terms of potential consequences via constant, long-term immune system stimulation (e.g. - autoimmune issues, lessening immune system functionality, etc.)?
- what about transmissibility issues?
- given that the occult infection is (apparently) systemic, what other parts of the body may be areas for concern (e.g. - brain, other internal organs, etc.)?
- the potential for relapse via immune system compromisation - be it through immunosuppression through drugs, radiation, aging, etc. There will be many differing medical issues for SVRs to confront as the years pass by with various diseases and their related tx's, etc - and having an ongoing replicating virus inside with the potential for rebound is important information for both patient and doctor to be aware of.
These are some (by no means all) of the issues/concerns that researchers, SVRs and their doctors will have to look at and deal with over time to see what (and how little or great) the implications/effects are.
TnHepGuy
You have voiced all of my concerns very clearly. You make excellent points on each of these issues, and I am completely with you in feeling a great need for further study, better understanding of the implications of persistent HCV, and the development of more complete treatments or even a real 'cure' for this disease.
By now it should be plainly apparent to everyone on this forum that there is ample, and growing evidence that the virus is indeed NOT GONE after we achieve SVR, and is still replicating quietly in selected blood components, organs, and tissues.
For people to assume that it will do no harm is really denial at its best, in that we have no clear idea of what the long term implications of this lingering viral state might be.
Sure, I want to be as healthy as I can possible be after my SVR, and do not want to obsess endlessly about the virus, but this information clearly puts us on notice that there is more after SVR to take into account, than was previously thought in medical circles. We will need to know what we are up against, and we will need ongoing medical advances that will deal with these issues.
We also need to find out whether or not the virus continues to inhabit and replicate in other compartments after SVR, such as the brain, connective tissue, eyes, CNS, bone marrow, etc. We really have no clear answers to these questions at this point.
An open question remains: why do so many people retain severe fatigue related sx for years after SVR? and other symptoms as well?
DoubleDose
Hi TN. I read some of the links you have provided here (someone put a URL up where you had given links to abstracts, etc.) Great reads. Thanks for all you do.
I talked to my doc a few weeks ago about this occult stuff, and he said they did one of the largest studies there (at Duke) on this and that yes -- it has been found in the livers of patients who are SVR but that it had to be looked for very hard (many many samples) to find it. He didn't minimize the importance of this data but said that it needs to be put in perspective. He put it in perspective for me by making the analogy that they can look at slices of breast tissue in breast cancer patients who have undergone chemotherapy and are in remission, and that they can find CA cells if they look for it hard enough. He ended by saying that the very best thing a Hep C patient can do is to treat and achieve SVR regardless of this data.
hmmm :) Interesting stuff.
had to look this up: peripheral blood mononuclear cells (PBMCs), hmmm have to ponder the signifigance of lurking there as opposed to liver cells.........
I think the research is interesting, but as the researcher himself says:
"persistence of HCV in these patients should be taken into account under special circumstances (e.g., immunosuppression or chemotherapy)."
unless we are in this situation or have these special circumstances, dealing with some other illness and/or treatments, this research does not impact someone who has treated their HCV and achieved SVR.
Even if you do end up facing a situation like this, it is still very very unlikely you would have HCV begin replicating again after acheiving SVR. We have enough to worry about as it is, no need to worry about this or worry that once you acheive SVR it might return, chances are very good it will not.
By coincidence I asked my consultant just this week if SVR's who subsequently required liver transplantation ever relapsed in the face of the immuno-suppressive drugs.He replied 'Surprisingly no!'
I wouldn't worry too much about this issue.
yes I do feel fortunate to be SVR but reading this,,,always does make you wonder,,,what will become of us after being SVR say 5 to 10 years. Really,,,it is something that we can not forget and I'm sure that all of us realize that we will always have an ongoing check in with our drs through the years and thats about the best we can do. As far as leftover sides,,,knowing that others are experiencing same,,,this place is great for us to meet and keep up with ongoing health. I have wondered also about transmission even though there is no viral load,,,I still am very cautious!
It ain't over till it's over but when is it ever over?
I agree that it's up to us to be vigilant and get LFTs annually etc. but overall I think SVRs are in very good shape - as long as they feel that way.
Mike
...or anyone. Please excuse my ignorance, but what are PBMCs?
I agree. Now, if only I felt that way!!!!
DD
TNGUY, is this the same study we read before? it seems like it. I know the significance of negative strands found, but what is the significance of positive strands?
This is why we can't be organ donors or give blood - because of possible occult virus. But it shouldn't affect my own quality of life, and it's highly unlikely that I could pass hep c on to other people.
My PCR indicated clear <50 six months post tx. I feel very well now, better than before tx, and I don't have that old pre-tx fatigue. I'm glad I treated; my doctor said I'm "cured" of hep c now. I really want to get on with my life. I've got to stop thinking about hep c so much. I hope I can just move along to other stuff. Best of luck to all of us.
Bob
I had no clue what PMBC was either and still don't know, but after I read the clinical trial, for me it began to take on the meaning, People Might Be Crazy. Seriously though, I googled it, and it took me to
http://www.clinicaltrials.gov/ct/gui/show/NCT00188201
"peripheral blood mononuclear cells (PMBC)"
I'm feel like Bob (just not SVR). Overload overload. The more I read the more confuddled I get. I have a headache now, and I know now it's probably because the virus has crossed the blood brain barrier and is in my brain.
Seriously again though - this is something for everyone to think about (the findings of the study TNGuy posted), but I just don't think it's wise to try to apply the findings to.... nevermind. I don't know what I think anymore.
I just heard that a new article came out in Hepatology Magazine that deals with re-treatment and the low success rates. I haven't read it, but thought someone may have?
HERE IS A BARE BONES VERSION OF THIS IMPORTANT PAPER
HUGE STUDY NOT VERY GOOD NEWS
IT GIVES A NEW ARGUMENT TO THE DECISION MAKING PROCESS TO WAIT OR TO TREAT WHILE FIBROSIS IS STILL LOW
I saw my hematologist/medical/oncologist about unrelated hepc stuff yesterday.
He knows I am SVR. Thought I quiz him a little.
Do you think I have remnant virus in liver, PBMC, lymph tissue, etc....of course you do, hope you weren't told otherwise.
How come you know, you are not specializing in viral hepatitis...I treat liver cancer, don't I, got to know all this stuff.
I think it is a good idea to treat prophylactically with low dose Interferon should I ever be in need of immunosuppressive therapy...you have any studies on that...no, but it makes sense....maybe, you see me when you get a cancer. In the meantime I will look into that.
So you don't think I am talking of the wall...absolutely not, but you may have to pay out of pocket for Interferon.
I call that a forward thinking doc.
Thanks Tnguy, you know how much I appreciate your posts and links.
Ina
Haha, I used to encourage tx till blue in the face. Gotten myself into arguments or got ignored. The "Interferon is poison, and stage 1 and 2 can wait" crowd outnumbered Cuteus and myself almost all the time.
Maybe some 'watch and wait' members see your post and listen up.
Ina
Still makes sense to me that a stage 1 or 2 has the option of waiting it out. Lots depends on rate of progression, lifestyle and what they're waiting for. I don't think anyone has advocated knowingly waiting for cirrhosis before treating. Interferon would not be my recreational drug of choice.
I am definitely not the "watch and wait" type of HCV-veterans, having received 5 therapies, the last two being completed full time PEG-Combos (classified as "partial responder"/relapser).
I guess about half of us (or more, a rapidly increasing population anyway) are non-responders. This is the most significant portion of HCV patients seeing the hepatologists, including the most interested and in HCV-issues educated patients - the most readers here on this forum are by now non-responders, I guess. Our dilemma is not "to treat or not to treat", but what can we do to prevent or postpone liver fibrosis until we get some cure.
It is a purist attitude, that can easily be hurt by perpectives having to live with persistent virus remnants. This is a psychological pitfall of our half digested school education, the same one which turned out to be very harmful for provoking allergies: excessive disinfecting behavior (or EDB :-).
It is a more mature attitude to accept our live is worth living in symbiosis with a virulent virus population.
My CONCLUSIONS:
1. Achieving SVR is a worthwhile aim for all HCV-infected people, despite of limitations.
2. There is a double motivation for having our liver in good shape: beside increasing our general living capacity the chance for a cure is depending on it directly!
3. Therapy is a good opportunity for treatment-naive people.
4. For Non-Responders should any other measures with a potential halting fibrosis be of interest.
I personally drink now more coffee and green tee, have recently changed my blood-pressure medication to losartan (irbesartan could be another option), because these all have potential antifibrotic capacity attributed.
I have never regretted treating at stage one, grade two. I did have the option to wait a bit, but aging was not waiting and no one could tell me how fast MY damage was going to progress. It made sense to treat while liver was mildly damaged, I was relatively young, had good insurance (thank G for that!), and a secure job. Many factors to consider. No one should wait based only on level of damage.
I believe the liverdisease.com site also suggests treating while damage is mild.
In light of all my fellow hep c relatives that are still struggling to decrease the freaking thing from their blood, I consider myself extremely lucky, and willing to live with whatever diminished, stunted remnants might be left in my PBMCs. 20 patients is not a great sample, and even there, not everyone had negative strands. It is never 100% anything.
I also consider myself cured from hepatitis, whether there are traces of whatever in the liver, I will need to see prove that it is affecting my liver or other tissue negatively before worrying about it.
Great news on the Hep. Now we'll try to wean you off the margaritas and bad porn. Or maybe 'wait and watch' the appropriate course.....(or is that sip and watch)?
One of the things I took away from my converstation re this article was that it is better to extend than to retreat. The chances of SVR with re treating go down, to people with low fibrosis to 30% and to those that retreat with high fibrosis to 9%. That is a grim statistic. All those thinking about extending should take note. I think what HR is saying is that with this huge study and great chance of lowering svr chances for those with high fibrosis when retreating, we need to consider this in our tx options. HR, please correct me if I am wrong.
Does anyone have access to this article we have been talking about. I went online and they want 1100. a year for a subscription! That's outta my budget.
It's too pricey for me, but you can get it at the library.
I'd like to read it too because I can't tell from what HR posted if they were nonresponders, relapsers or what. I did read the HALTC info (they have a web site) and it appears they treated for 24 weeks (?)if clear by 12? Who knows!