Aa
Conversation with HepatitisResearcher
I thought that a thread devoted to remaining comments from HR and any relevant questions from the forum might be useful.
To HR:
My question is this: If there is residual virus left after successful treatment (and SVR) as is generally becoming an accepted fact (such as lymphatic system virus), then might the SVR's and the spontaneous clearers be dealing with an ongoing 'autoimmune' issue, in that their systems are perpetually dealing with viral suppression, and possibly generating a constant, or near constant state of immune system stimulation?
Might this be a major cause of the ongoing symptoms that many SVR's continue to experience long after tx?
AND...if THIS might be the case....what about the family members and intimate contacts that may also be 'receiving' the virus in tissue or fluid transmissions (non-blood), possibly setting up the same pattern of constant viral suppression and immune system stimulation , without a generalized or typical HCV blood infection? In other words, might there be a similar 'persistent HCV infection' taking place in close contacts of HCV infected, but without provoking a full blown infection, and without any antibodies evident in the blood?
Here again we might see symptoms of 'autoimmune disorder', or CFS-like problems, but would have no confirmation of cause, since the blood would yield no HCV+ antibodies, nor would there be a positive PCR on blood testing? It might be a good idea to look closely at large populations of HCV+ intimate contacts to assess their health and symptoms.
Thanks for your input!!!
DoubleDos
To HR:
My question is this: If there is residual virus left after successful treatment (and SVR) as is generally becoming an accepted fact (such as lymphatic system virus), then might the SVR's and the spontaneous clearers be dealing with an ongoing 'autoimmune' issue, in that their systems are perpetually dealing with viral suppression, and possibly generating a constant, or near constant state of immune system stimulation?
Might this be a major cause of the ongoing symptoms that many SVR's continue to experience long after tx?
AND...if THIS might be the case....what about the family members and intimate contacts that may also be 'receiving' the virus in tissue or fluid transmissions (non-blood), possibly setting up the same pattern of constant viral suppression and immune system stimulation , without a generalized or typical HCV blood infection? In other words, might there be a similar 'persistent HCV infection' taking place in close contacts of HCV infected, but without provoking a full blown infection, and without any antibodies evident in the blood?
Here again we might see symptoms of 'autoimmune disorder', or CFS-like problems, but would have no confirmation of cause, since the blood would yield no HCV+ antibodies, nor would there be a positive PCR on blood testing? It might be a good idea to look closely at large populations of HCV+ intimate contacts to assess their health and symptoms.
Thanks for your input!!!
DoubleDos
You know, maybe it was MKAndrew or someone else who suggested they would test very early on re-treatment. For some reason I thought it might have been you. If I hypothetically treated again, I'd test the same way but probably add a 24-hour and 48 hour test.
Briefly, as a weekend of mouse hunting has left me in need of sleep :) there have been studies showing let's say very, very early response.
My memory is inexact, but I believe one suggested either the 24 or 48 hour PCR was most representative of SVR. I'd be happy to try and dig it out, but if your're looking for very large trial data like with the 12 week, I'm sure that none exist. Still the principle of RVR seems to suggest the earlier the response the better the results.
And yes, I would have had more clinically useful information if for example my week 2 PCR came out negative <5 IU/ml. For one thing , I probably would have immediately stopped double dosing the Peg and perhaps even dropped the riba down a notch. While I will never know, there's a chance my high-dose riba strategy backfired as I ended up having to stop riba for a week around week 3 or 4 due to anemia During that time my viral load bumped up, but fortunately it came back down.
My hepatologist who I have a lot of faith in orders weekly PCRs from week 1 until non-detectible, and then monthlies. Does he have studies to back this up? Probably not, because very few doctors treat like that, but it sounded like a reasonable approach to me and obviously to him.
As to the 48 week test, again, a study showed a certain percent of PCR negatives are TMA positives, and 100% of this group relapsed. It therefore seems reasonable to me that many of these PCR negatives/TMA positives at week 48 were also PCR Neg/TMA pos earlier on -- perhaps at week 24 or even earlier, perhaps even from their first negative PCR.
Had these patients had more sensitive tests, their doctors might have either bumped up the drugs, extended treatment, a combination, or even terminated treatment. Negative is what they really want these days, not two log drops.
As it is, this hypothetical group was in effect treating with its head in the sand thinking themself negative while really being positive. Again, probably no studies, but in such a fast-paced field like Hep C, clinical practice often leads clinical trials, and reasonable things are tried.
Again, another hepatologist I spoke to regarding length of treatment specifically asked the sensitivity of my tests and their frequency. He made a point to tell me that being negative *throughout* treatment with very sensitive tests worked to my favor. Any studies on this, probably not.
I can't *prove* to you that sensitive and frequent viral load tests are better, but it does seem the trend among a group of clinicians I respect. In fact, Jensen talks about it over at the Clinical Options site to some extent. Not sure if he does weekly tests but I believe he does sensitive monthly VLs througout treatment.
I may be confusing you with someone else, but didn't you say way back a while that if you re-treated you'd start getting tested early on? Maybe not, but why wouldn't you get more frequent and more sensitive tests if insurance allowed?
If it wasn't for the doctors telling me to get these tests, I might also think myself neurotic with all these tests. But it wasn't my idea, and looking back I'm glad I got them.
All the best,
-- Jim
My memory is inexact, but I believe one suggested either the 24 or 48 hour PCR was most representative of SVR. I'd be happy to try and dig it out, but if your're looking for very large trial data like with the 12 week, I'm sure that none exist. Still the principle of RVR seems to suggest the earlier the response the better the results.
And yes, I would have had more clinically useful information if for example my week 2 PCR came out negative <5 IU/ml. For one thing , I probably would have immediately stopped double dosing the Peg and perhaps even dropped the riba down a notch. While I will never know, there's a chance my high-dose riba strategy backfired as I ended up having to stop riba for a week around week 3 or 4 due to anemia During that time my viral load bumped up, but fortunately it came back down.
My hepatologist who I have a lot of faith in orders weekly PCRs from week 1 until non-detectible, and then monthlies. Does he have studies to back this up? Probably not, because very few doctors treat like that, but it sounded like a reasonable approach to me and obviously to him.
As to the 48 week test, again, a study showed a certain percent of PCR negatives are TMA positives, and 100% of this group relapsed. It therefore seems reasonable to me that many of these PCR negatives/TMA positives at week 48 were also PCR Neg/TMA pos earlier on -- perhaps at week 24 or even earlier, perhaps even from their first negative PCR.
Had these patients had more sensitive tests, their doctors might have either bumped up the drugs, extended treatment, a combination, or even terminated treatment. Negative is what they really want these days, not two log drops.
As it is, this hypothetical group was in effect treating with its head in the sand thinking themself negative while really being positive. Again, probably no studies, but in such a fast-paced field like Hep C, clinical practice often leads clinical trials, and reasonable things are tried.
Again, another hepatologist I spoke to regarding length of treatment specifically asked the sensitivity of my tests and their frequency. He made a point to tell me that being negative *throughout* treatment with very sensitive tests worked to my favor. Any studies on this, probably not.
I can't *prove* to you that sensitive and frequent viral load tests are better, but it does seem the trend among a group of clinicians I respect. In fact, Jensen talks about it over at the Clinical Options site to some extent. Not sure if he does weekly tests but I believe he does sensitive monthly VLs througout treatment.
I may be confusing you with someone else, but didn't you say way back a while that if you re-treated you'd start getting tested early on? Maybe not, but why wouldn't you get more frequent and more sensitive tests if insurance allowed?
If it wasn't for the doctors telling me to get these tests, I might also think myself neurotic with all these tests. But it wasn't my idea, and looking back I'm glad I got them.
All the best,
-- Jim
I apologize I copied a post you answered. I meant to copy a post by Ina relating to cryo. Here it is.
"Some of us here, including myself, have taken a sledge hammer approach to killing our HCV.
Doubledose did double Peg for 72 weeks, Sandi tx with standard drugs for 2 1/2 years, and I treated non stop for 111 weeks with standard Peg and 800mg Riba (type 2a).
1)
My question is this...since I tx so long, any of the cells in which HCV can be found, liver or otherwise, must have turned over at least once, and have taken any remaining virus with it.
What I am saying, do those of us that have tx so aggressively have a better chance of having gotten rid of residual virus.
2)
Since most of us SVR's don't have post tx biopsies which could detect occult virus, our only option is to watch for mild elevations of ALT's or GGT's which is not very reliable.
However, since I had also Type II Cryo, which cleared with HCV, can I assume, that should Cryo ever become detectible again, while remaining PCR neg, that I still have some low levels of virus somewhere?
Do you think that crippled leftover viruses can stimulate the B-cells enough to start this auto-immune response again.
Willing here linked a paper that lets me to believe my thoughts are on the right track.
I am concered about about reidual (occult) virus and the damage it might do to our livers over a 20 year period. Most of us here are at the age were other disease (cancer) occur more frequenly.
It would be comforting to know that we can endure possible chemotherapy without having to worry about our compromised livers.
I think I speak for all of us....you are greatly appreciated here.
Ina"
"Some of us here, including myself, have taken a sledge hammer approach to killing our HCV.
Doubledose did double Peg for 72 weeks, Sandi tx with standard drugs for 2 1/2 years, and I treated non stop for 111 weeks with standard Peg and 800mg Riba (type 2a).
1)
My question is this...since I tx so long, any of the cells in which HCV can be found, liver or otherwise, must have turned over at least once, and have taken any remaining virus with it.
What I am saying, do those of us that have tx so aggressively have a better chance of having gotten rid of residual virus.
2)
Since most of us SVR's don't have post tx biopsies which could detect occult virus, our only option is to watch for mild elevations of ALT's or GGT's which is not very reliable.
However, since I had also Type II Cryo, which cleared with HCV, can I assume, that should Cryo ever become detectible again, while remaining PCR neg, that I still have some low levels of virus somewhere?
Do you think that crippled leftover viruses can stimulate the B-cells enough to start this auto-immune response again.
Willing here linked a paper that lets me to believe my thoughts are on the right track.
I am concered about about reidual (occult) virus and the damage it might do to our livers over a 20 year period. Most of us here are at the age were other disease (cancer) occur more frequenly.
It would be comforting to know that we can endure possible chemotherapy without having to worry about our compromised livers.
I think I speak for all of us....you are greatly appreciated here.
Ina"
jim: I don't see how sensitive serum-VL tests at weeks 2 or 48 can contribute to decisions about therapy simply because there is no published data to compare the test results with. For example, how could you have interpreted the implications of VL results of 500 or <2 at week 2 ? that is, if had you had used a TMA how much better would your outlook have been than just knowing you were <600?
Since measuring serum-VL only provides an indirect measure of viral activity, the primary value of the tests is the outcome prediction obtained by comparison with that of other patients at the same point in tx. Currently, few large studies with sensitive VL results are available so the main predictive value seems to be in deciding to shorten tx if you're UND at week 4( and meet other requirements) or extending if you still have VL at 12.
hr: thanks for your reply. I now understand your objection, though even in the absence of an RNA/cell estimate it wold seem the % reduction shown in their Fig. 6 measures something explictly about the immune response's ability to eliminate HCV-infected cells, as opposed to eliminating inter-cellular virus. In that regard the test would seem to have some (small) diagnostic value even while not calibrated over a large patient pool.
Since measuring serum-VL only provides an indirect measure of viral activity, the primary value of the tests is the outcome prediction obtained by comparison with that of other patients at the same point in tx. Currently, few large studies with sensitive VL results are available so the main predictive value seems to be in deciding to shorten tx if you're UND at week 4( and meet other requirements) or extending if you still have VL at 12.
hr: thanks for your reply. I now understand your objection, though even in the absence of an RNA/cell estimate it wold seem the % reduction shown in their Fig. 6 measures something explictly about the immune response's ability to eliminate HCV-infected cells, as opposed to eliminating inter-cellular virus. In that regard the test would seem to have some (small) diagnostic value even while not calibrated over a large patient pool.
MEDICAL PROFESSIONAL
The LFT will give you an early idea if the Herbs attack your liver, thats important, and the basic metabolic is well -very very basic..... Beyond that - well there is the clinical picture
..feeling more energetic, less Kleenex, knee pain, fatique, nightly trips to the potty.....
No it would not be proper to discuss reasonable immune function assessment here. Kalio has my email and if you send your tel. writers cramp can be avoided. Frankly, the discussions I sometimes have with people re real issues verbally would cover 50 pages easily.
Writing is extremely restrictive and you send your comments deeply frustrated with the limitation and all the unstated relevant info ommitted.
..feeling more energetic, less Kleenex, knee pain, fatique, nightly trips to the potty.....
No it would not be proper to discuss reasonable immune function assessment here. Kalio has my email and if you send your tel. writers cramp can be avoided. Frankly, the discussions I sometimes have with people re real issues verbally would cover 50 pages easily.
Writing is extremely restrictive and you send your comments deeply frustrated with the limitation and all the unstated relevant info ommitted.
Yes, while still speculative, reassuring even while confirming some of your concerns. Reassuring because in spite of possible immune system alternation after SVR, normal measures like eating well, exercise, etc, may make a difference. I'd also like to throw the possiblity of TCM or other alternative medical approaches into the post tx mix because in theory they deal with balancing the immune system. Forgot, if you've ever looked into TCM. Something I'm considering right now.
Be well,
-- Jim
Be well,
-- Jim
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