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Avatar universal

Reservoirs, SVR, Relapse, Barriers, etc.

Thanbey does raise quite a few questions, but very few answers.
There is little scientific proof at this point that SVR status means one is still carrying the virus in 'reservoirs'.  I have discussed this issue with several leading virologists, and hepatologists.  All seemed to agree unequivocally that the virus is not in hiding anywhere else in the body after a TRUE SVR is achieved.

The question one must ask is this:  If the HCV virus initially is introduced into the body via the bloodstream, and infects the blood and liver, at minimum, and then if migrates to the brain, spinal cord, lymphatic system, etc.  Then WHY does the reverse not seem to happen after SVR is achieved in blood and liver???
WHY, when SVR is achieved, does the virus NOT seem to travel back through those same routes, FROM the brain, spinal tissue, lymphatic system, etc. to REINFECT the blood and liver????

You would think that IF THERE WERE reservoirs of virus remaining in the body, that it would not take very long for it to pass back into the blood, and become detected again by PCR.  Also, the liver would become affected and would generally be demonstrated by LFT abnormalities.

THIS is the logic that the reservoir theory proponents DO NOT address.  Will it now take , let's say, 50 years for the reverse to take place?  80 years????  Because it does not seem to be happening in SVR's after 2, 3, 5, or 10 year periods.

Thanbey, believe me I have wrestled with this issue for a long time, and have asked many pointed questions to docs in all fields. So far, logic and research points to real SVR.
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Avatar universal
Your time dedicated to inquiries and research is truly appreciated.
  The bottom line is, there are no absolutes in science and you do not hear doctors making statements that do not include; "it seems, it is likely, possibly", etc.  For anyone to make absolute statements like; you will not die, Hcv will not kill you, is to say the least, unscientific. Unless it is stated as an opinion. Maybe that is why Med help has started that disclaimer in the comment section. To make it clear that they are opinions, since some individuals make such blatant statements as I stated above.  There are more unknowns in medicine than knowns, especially in hcv.
  We could quote experts and studies, and it still would not make it an absolute truth.  The thing about hcv is that they are all making scientific guesses and we should take them as such.  Theories, and not absolute facts.
TY for your contribution to this forum, the good thing about Pt to pt is that we state our arguments as opinions, not irrevocable truths.
Avatar universal
I  thought I would  find  an issue with  the statements of your above comment, I always do, but most of it was well expressed as as an opinion, and emphasizing the limitation of the lack knowledge in hcv.  I actually found myself agreeing with  almost everything.
Up to the mention of follow up by other specialties post tx.  You must take into account that many of us women were already going to those specialists for extrahepatic manifestations WAY prior to tx. So to assign that expense as only an after effect of tx is selling the effects of the actual infection short.
Any tx for any illness should have the pt to dr exchange of benefit vs risk. there can be no argument about that.  
No one can attribute the post tx expense as the effect of only interferon without also acknowledging the actual effect of the virus in other organs.

Of course, you already know how I feel about the plug ins...so no need to mention :-]
Avatar universal
You are correct. Some of the extrahepatic manifestations of hepatitis C are, indeed , present befre treatment with interferon.

Yet to be determined is whether, long term, things are made better.

However, there are many documented cases of interferon induced effects of interferon therapy and these are well documented in the literature prior to the use of interferon therapy for hepatitis C.

This is a topic worthy of much more attention than it currently receives, funding for research-wise and in every other way.

Thanks,

thanbey
Avatar universal
The statement: Interferon impacts 10% of the infected population, needs a little clarification. Is not sarcasm but true confusion.  Is it 10% of Known infections or 10% of the estimated 4 million infected of which the majority don't know of this infection, or 10% of the few that know they are infected and chose to treat or does it include the ones that did not choose to treat? Ok, now my head is spinning...
Avatar universal
Ok I got that the 10% minority comes from the data from clinical trials? There are scores of us under tx not in that data and will not be, how can anyone then conclude that the majority or at least, a larger minority than 10% of the infected population is not impacted by interferon Tx? That the actual benefit vs risk is not higher?
  How many stats like me, on Tx, not included thus making that estimation quite inaccurate.  The only thing I am learning from stats recently is that they  reflect a lot of inaccuracies. whew!
Avatar universal
I know of no reservoir theory proponents.

I would be fascinated to know what actual original work the virologists you spoke to have done on this question because the experts in this area have only a limited amount of pilot data themselves and are still formulating hypothesis, the best being Aronow in Los Angeles. He has autopsy tissue samples and the beginning of a tissue bank for study on these and other questions. (check out Dr. Aronow's presentation on video at the NIH Consensus Management Conference, 2002)I would look askance at anyone who purports to have a conclusive answer at this point in time. Certainly interpreting anything I say as anything more than sharing data or raising questions about the ****-sure statements I see made is way beyond anything I have said, or would ever say, given that I only had a small part in one such neurological research study.

I don't know anyone, including me, who is putting forward a theory at this point. The data is what it is and interpretations and strategies are a way off. There are questions of enormous significance that, for lack of research dollars, are going unasked and unanswered. Too many assumptions and opinions: too little data, lots of conclusions being drawn from abstracts and articles that may, or may not, be relevant to this question.

Sure the virus, in theory, can go in both directions, but blood flow in the brain is not quite that simple. I personally spoke with Jay Hoofnagle about this in the presence of Dr. Aronow and Hoofnagle poo-pooed this right in front of one of the leading experts in the world! So, I am not terribly impressed at this point with anyone throwing out guesses or making statements no matter who they are. I'll stick with the researchers who are doing the work and asking the right questions. That is key: asking the right questions. It is tough to do in an environment of cross currents, inadequate data, and conflicts of ego and interest.

The Journal of the American Medical Association (July 2003) undertook the question of risk versus benefit with respect to interferon therapy and published results of a Harvard School of Public Policy study on risk versus benefit for the use of interferon. It is a sobering report for anyone considering interferon therapy and I urge you to read it.

Bottom line is WE DON'T KNOW at this time what the actual benefits and consequences are of interferon therapy despite all the studies that have been done by the drug companies and others. The parameters being used to measure "{cure" and successful outcome" are, themselves open to question.

There is a point where risk outweighs the potential for benefits regardless of the possibily of an SVR. Where that point is depends on many factors, but the reality is that this treatment can induce problems that hepatologists know nothing about identifying or dealing with and the follow up is done by other specialtites, namely pulmonology, cardiology, psychiatry, rheumatology, endocrinology, gynecology, hematology, neurology.

Yet, the vast majority of the information comes from gastroenterology and hepatology whose knowledge pretty much stops at the liver. At SVR, you are released from care and sent to another appropriate specialy if you need follow up care for the after effects of interferon therapy, despite "cure."

I am NOT anti-treatment. I am for full disclosure to patients and doing my part to inform people of their options. If you want an anti-treatment proponent, try <a href="http://www.objectivemedicine.com/hepcfree.htm">Interview with Loyd Wright</a>.  My true and honest opinion is that treatment should be something certain patients consider and for any reason a patient and their doctor chooses to consider it. But, both doctor and patient should be informed about the considerable questions surrounding the use of interferon and both the risks and the potential benefits that its use poses. Staying on treatment at all costs is not even recommended by the manufacturers. Even they recognize that the cost may be too high.

Like you, I have asked the hard questions of drug companies, researchers, and experts. I have attended and been vocal about this for about 12 years now. Regardless of whether I am a doctor or not, I have a large amount of knowledge gained by attending post graduate courses (the ones hepatologists take), speaking, teaching and serving on scientific advisory boards.

You can ridicule me, but you cannot silence me. The facts are what they are, independent of anyone's opinion. An SVR is the best result there can be at this point in our history, and there are many studies showing that an SVR may very well "cure" liver disease. That is a long way from saying that it comes at no cost to the health of a person or that it is a guarantee of anything. And, for those who do not achieve an SVR , those with minimal liver disease in the first place, and women, there appears (according to JAMA and Harvard) to be more risk than potential for benefit.

That is not my theory. I have no theory. That is what the independent scientific researchers are telling us. My moral compass tells me to tell the truth even when I do not like the truth or agree with it. I want a cure for hepatitis C. I would be personally affected if there were such a thing. I know better treatments are coming. I also know they are not coming fast enough and interferon is the only option for some people.

In scientific jargon: "that sucks."

Thank you for the opportunity to expand on this topic a little bit and to have an open exchange of ideas and information.

thanbey

<a href="http://www.hcop.org/">Hepatitis C Outreach Project</a>.  







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