Woo slow down people, god hostility or what? It's like *** for tat here. Firstly to newleaf if you had read My initial post on this thread you would realise that I have serious respect and admiration fir the older more experienced people on here that initially is why I came on site to get information from heppers who had educated them selves. And in the first few lines of this thread I stated that I was looking for info from some of these people so that in it's self suggests that at the very least respect these older members opions and knowledge, or at least it does where I was raised. So please don't suggest I'm disrespecting anyone and to anyone I actually have offend I am sorry it was unintentional. Now as for new leaf You might find that that the elders on here would have no problem putting an upstart like me down themselves if they thought I wad dis respecting or insulting them, so maybe it's just you who feels some disrespect on my part and I'm sorry but as I have clearly stated none was meant. As for my being naive maybe so. But I dare anyone to say that if 1% of the worlds heppers did get together and pool resources and knowledge to fund and lobby for more research that it wouldn't be a step forward from the work done on thus site and others like it, and these sites could still be here to offer support encouragement and easy access to knowledge collect through their members hard efforts. Now I know it more than likely not going to happen and I certainly ain't the guy to get it off the ground wouldn't know where to begin? But I'd certainly welcome it and support it to the fullest of my ability. And I would also suggest that the fantastic people who have dedicated the the past how many years to helping others could have no better compliment than to see a load of their peers who they helped and educated take up the reins and try to do even more and become even better educated and gain an even louder voice? I would suggest that anyone who had worked really hard on thus and dedicated them selves to helping others and doing all this research who felt insulted by people standing together in an even more positive way and trying to take it further would feel thus for purely selfish reasons and as these elders have already shown selfish is one thing they are not. They did so much trying to help and educate others. So maybe newleaf if the any IFC the elder more respected and better educated members on here want to chastise up starts like me, you might leave it to them? And the last thought.......... Who better than to unite heppers than these elders who have as you have rightly said did so much for so long to help others. Maybe one or some of these elders could or should kick start something a kin to my utopian naive simplystic mass
movement. Thank you! And again sorry if I did offend anyone I do tend to ramble a bit and don't always get my point accross as I would like.
I cut and pasted the following but it says what it says and it states inaccurate information no matter how you dice it.
"I asked him about SVR and relapse and he said that in his experience, if you are clear at the end, now that the PCR's are so dramatically improved, you will SVR. In earlier times, the PCR's were not sensitive enough to pick up very low VL and when SOC was removed, the unkilled virus re-emerged. I am not a trusting person (born sceptic), but I believe this guy."
That's wrong! Undetectable at the end of treatment does not equal SVR. Some people really do relapse despite being undetectable at EOT per sensitive PCR.
Virological relapse in chronic hepatitis C.
Poordad FF, Flamm SL.
2009
Gastroenterology and Hepatology, Cedars-Sinai Medical Center, Los Angeles, CA, USA. Fred.***@****
"Approximately one-third of all patients infected with hepatitis C virus (HCV) genotype 1 who complete pegylated interferon alpha based therapy and have undetectable serum HCV RNA at the end of treatment will experience relapse. Although relapse is a common outcome of therapy, its pathology and strategies for optimal management are poorly understood; however, optimized ribavirin dosing is recognized as pivotal in mitigating relapse. Recent data also suggest that early viral kinetics might help identify particular patient groups, such as slow responders, who are predisposed to relapse. This review provides a comprehensive overview of the importance of relapse in patients with chronic hepatitis C, including its underlying pathobiology, potential predictors and strategies to optimize the retreatment of previous relapsers."
http://www.ncbi.nlm.nih.gov/pubmed/19474464
There are many memgers of this forum that come for advice from people that have been through all this before. None of us are doctors and none of us should provide strong opinions without doing a lot of research. There was no intent to flame on my part.
You made an incorrect statement and I was just trying to set the record straight. You might know much more than me about a lot of thinks, but I am an expert on relapse.
" That's a form of flaming, not argument. Get back to the point."
Disagreeing with you is not flaming it's pointing out incorrect ior misleading information.
I don't see an awful lot of science that changed in any of this thread - just misunderstanding.
Relapse is indeed relapse and that would be what unseen virus that reemerges after treatment has ended would be just as Andiamo and Mike have said.
Anyone who tests >>>>>>>>>"who I think is cautious because he's seen so many TX failures over the years. "
He should be seeing about 50% like every other doctor - no more, no less, pretty standard number (although lately with the new guidlines that old number seems a big high to me with the studies done to show the importance of the 4 week PCR and the 72 week extensions.) People like me who in the old days would have relapsed now are achieving SVR much more often so the number most likely is going down rather than up.
PCR's only detect virus circulating in the blood. There's a lot more to TX.
This thread is really about lateral thinkers trying to put ideas together logically, it's not about disproving the opinions of others, whether they be laymen or professionals. That's a form of flaming, not argument. Get back to the point.
When other posters cut and paste your entry, you know what's coming. You think we're smarter than infectious disease specialists?
Roche's Taqman 2.0 is what the trials use, even Roche's biggest competitor, Schering Plough. Even 75 IU/ml are reported as "detected below the linit of quantification", never as UD.
Personal experience can lead to deceptive reasoning in a quickly changing science.
Isn't that called "RELAPSE"?
I really wouldn't want to be seeing that doctor - that line about sensitive PRCs is flat out wrong. The articles that favor extending treatment in certain situations cite a significantly lower relapse with extended treatment.
Am I to assume that anyone who achieves an undetectable by a sensitive PCR will not relapse? Why not just stop after the first undetectable result - that is, if the test is a sensitive PCR?
What poppycock! Is that a bad word?
Mike
"He's an old professional infectious disease researcher who I think is cautious because he's seen so many TX failures over the years. I asked him about SVR and relapse and he said that in his experience, if you are clear at the end, now that the PCR's are so dramatically improved, you will SVR. In earlier times, the PCR's were not sensitive enough to pick up very low VL and when SOC was removed, the unkilled virus re-emerged. I am not a trusting person (born sceptic), but I believe this guy. "
This is patently false. During my previous treatment with SOC, I was undetectable with a Heptimax from week 12 to EOT; Heptimax is one of the most sensitive tests currently available. I relapsed two weeks post treatment and my experience is common for people that are relapsers. Please spend more time researching before you make such strong and incorrect statements.
If things work out well, we'll end up with chronvac or some other immunity booster less harmful to overall systems, plus probably a PI that targets the viral life cycle specifically and maybe riba or something else that pushes the immune booster like riba does to interferon. They are adding ritonovir (an AIDS antiviral) to the new generation PI's.
The research on Hep C has never been so fast and furious as it is now. I credit the basic research that has come from increased AIDS research funding. We may never be able to kill that one but we've learned to grow virions in cell culture (unheard of before and permitting non-animal screening of proposed drugs), and a lot of other exceptional viral interruption techniques. It just gets better and better. I'll ask my doc about the chronvac, especially since he recently stated that he didn't think we'd get away from the interferon.
" id just love to see everyone afflicted with this get together and stand as one then we might get more results"
"We've been researching this stuff for years."
Seriously if you knew how smart some of the older members are you would realize how much work has gone into this forum for many years (much longer than I have been here). People researching continuously, going to researching hep specialists like Dr. J and Dr. A and asking loads of questions on the latest studies to report back here and get everything down where it can do public good. A lot of the older members are not posting right now for their own personal reasons but believe me - there really isn't much that hasn't been thoroughly dissected by some pretty damn brilliant people.
While it's great to talk about stuff it's almost an insult to those members who did all this work to s"ay we have to stand together".......it is idealistic and a great thought but truthfully quite simplistic and naive - just isn't going to happen.
What DO you think we've been doing every single day for the past 5 or ten years in here? Why DO you think those of us who are SVR for YEARS come back every single day if not to be support for the new people and stand together with them so they are not alone?
Please - while we understand your enthusiasm over it please remember that there are people out here who have dedicated years of their life to helping people with hep.
Your doc sounds cool, pity there werentmore like him. Next time you talk to him ask him what he thinks of chronvac c and it's results so far? It's end results fir the current trial won't be out till nov this year but you might ask him what he thinks about it's current results as opposed to early interfeon mono therapy results. It has the possibility to maybe takeon hep by it's self as it promotes your own immune system to kill the virus and let's face it that's what our immune systems where made for. Personally and I have basic medical training, I think if it does prove to be the equal of interferon we will still have to take RIBA and or one of the new inhibitors also just to give it a helping hand. But surely that's still better than what we got now? As I've said I would be interestedto hear your docs point if view on it? I know it's early days for chronvac but the early results are very good to say the least and the company who makes it are using very clear and positive language on their press releases, which I think us encouraging. Hopely this nasty little beasty we call hcv is on the run and it's days are well and truely numbered.
A lot of us resent having to take a dependency-building mood altering drug to counteract the side effects of a life saving medication. I had the anger SX and got by with a half dose of an antidepressant, which I am now reducing (I'm 3 wks post TX) slowly, hoping to have it gone in the next 10-14 days. Full dose made me complacent, 1/2 dose kept the meanness under control. You do what you gotta do.
My doc has been a steady researcher on HCV and attends all the confernces world-wide. He loves to share if asked an intelligent question. Just wish I always knew what to ask when he pops out something new and surprising.
Hi thanx for the feed back, this guy sounds cool seems to very current and I will agree that the research I've read doesn't say everyone will have viral particles left in em but some will. I'm lucky enough that I'm not hcv pos that long so if some thing else did come along and it worked I could possibly get my life back to just about normal. So fingers crossed. And as for long lasting interferon sides I know all bout them, it's just that for me depression would the worst. I kinda like me I'm a reasonably sane fun individual and I'd like to keep it that way.
Really a fascinating post; I love someone who can connect the dots.
It's obvious to me that most current research is aimed at removing interferon from the picture and shortening TX time. Look on the natap site for all of this year's drug trial results that were reported at meetings. Interferon has much worse side effects than mood disturbance, some of them permanent. A few weeks ago I asked my doctor and he thinks we'll never get away from interferon because that 'goosing' of the immune system can not be gotten away from. However, the main useful immune response that I've read about is interferon's ability to increase killer t-cells. Isn't that what you are saying chronvac does, with no side effects reported yet? I guess it's a 'maybe' for safe interferon replacement. Mix that with specifically targeting life cycle of the virus with PI's, etc., and who knows, everything may change to safer, shorter TX.
He's an old professional infectious disease researcher who I think is cautious because he's seen so many TX failures over the years. I asked him about SVR and relapse and he said that in his experience, if you are clear at the end, now that the PCR's are so dramatically improved, you will SVR. In earlier times, the PCR's were not sensitive enough to pick up very low VL and when SOC was removed, the unkilled virus re-emerged. I am not a trusting person (born sceptic), but I believe this guy.
As far as having the virus remain hidden in liver cells, he said that once the virus is killed, the non-reproductive genome of the virus can remain behind. It can be re-incited to reproduce but it's uncommon since the heightened immune response remains. I assumed he meant re-incitement from returning to liver damaging old behaviours and also assumed he meant overall heightened immunity. A query of this group tells me that the heightened immune response is probably against hcv, not overall viral infection. I recently asked again about viral material left behind and he said that is not a given in every patient, just some.
If I see him again, I will ask some more questions. I only see him when I've developed a scarey side effect and now that I am off meds, I may not see him again.
dude i didnt mean to suggest u havent been staying current, its just some ive talked to on here either havent or just dont want to know cos it takes em out of their cured safety zone sorry dude. dont wanna annoy anyone, id just love to see everyone afflicted with this get together and stand as one then we might get more results and more truth that all im only trying to get some peeps thinking. sorry again dude.
I cant answer your question sorry , but I do appreciate being called a hero . that was nice cant get enough of that ps your screen name is possitive ,and shows me you are a compasionate person . good luck
Where have you been Dude? We've been researching this stuff for years. Here you come with something we haven't thought of before? Dude, get real.
thanx for the feed back dude, but im tellin ya if even 1% of us 400,000,000 got together we would have serious lobbing power and if we threw $5 a week together we could do our own research or but stock in drug companies and as share holders we d be able to get a hell of a lot more info.
Gee, that's something we should think about. I may be wrong but I believe this topic might have been discussed before.
Regarding your observation:
"....svr peeps are being found to have hcv still hanging around in pmbc blood cells or liver tissues still doing damage although it seem at a slower rate. now i havent really had any feed back about this possibility of latent infection,..."
Check this page out because there are about 40 or 50 articles addressing that very subject. Many of the articles are complex so be prepared.
http://www.medhelp.org/health_pages/Hepatitis/Occult-Hepatitis-C/show/54?cid=64