HEPATITIS C COMMUNITY
Maintenance Therapy

Maintenance Therapy

Scott (revenire) had said that he was considering "maintenance therapy" when he relapsed after 88 weeks of tx.  The following trials are underway for maintenance therapy to reduce or slow the progression of HCV disease:HALT-C, EPIC-3, COPILOT, PROI-C, AEGIS.  The data that I'm finding is early.  Does anyone have any data about the effectiveness of maintenance therapy?
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Hey Scott, I was thinking about you and I can't recall whether this last tx was your first. Would you give me a short rundown on your treatment. Thanks, Mike
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Hmmm...what is his logic?   And does he want to retreat with Pegasys and Riba?  My intuitive hit is that your doc, bless his heart, is trying to do you no harm, which is quite good and admirable, but is he maybe a bit too fixated on "maintenance" rather than accelerating?   The question is,  maintain what?   Because you're retraining the immune response, hopefully, so it doesn't shut down when the drugs are withdrawn and the old inability to recognize and eradicate the virus reappears.   And can that retraining be successful if one merely repeats the last protocol, and repeats it at a lower algorithm?  I don't understand.  

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Scott,
Did your dr suggest daily dosing with infergen?My dr has suggested that for my next treatment round. (I've failed/relapsed 3 times so far).
Pam
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Thanks Scott.  Please keep us informed about your bx results and what's next.  Mike.
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Gotcha.   Sensible approach.  And then the question is about quality of life.   Could you go indefinitely on 90 mcg?
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Yup,  very tough situation.   I don't have any answers, I'm just raising the questions I would ask myself.    But I think you have a great shot at getting this reasonably under control.   Those biopsy results just might be more than compensation for that crappy PCR. ...that's what I hope, at any rate.      

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What report from the Mayo Clinic did your doctor read???

The issue of testing positive for HCV in the liver, versus in the blood, after SVR, has been studied by a wide variety of research teams, and in various trials.  Generally the after tx % of people who test positive for HCV in the liver, but negative in the blood, has been very, very tiny...about 2%.  Usually these people go on to a relapse in the year or so after therapy.

What statistics or trials is your doctor referring to when he makes generalized, blanket statements about SVR's implying that they all carry HCV in their livers, but not in the blood, in a dormant state???
This flies in the face of all the expert opinions, and research gathered to date.  Is there a new study out there that we have not seen???

Does you doctor have some inside knowledge that the other HCV experts have not been aware of?  I am very curious as to the underlying evidence for his statement.  One person relapsing years down the road does not prove a theory at all!!!

DoubleDose
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I may be wrong, but i thought that an RNA (qualitative) test told us if there was any HCV in our genetic maaterial, not just our blood, Isn't RNA similar to DNA? I certainly have never heard of this "dormant in your liver" stuff. Anyway, even if it is true I have taken a decision never to be tested again after a one year post-tx negative, so i guess I'll never know, I don't want to spend my life worrying about HCV "coming back", or whatever the terminology is. I have been told I am cured and i have chosen to believe this.
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As a follow up, please note the studies cited in the HCV Advocate newsletter regarding ABSENCE of HCV in hepatic tissue AFTER SVR, after many years.  Most studies have borne this out.  There are several studies referenced in the linked issue.  

Please let me know what studies have shown otherwise.  I am not aware that HCV is being found routinely in the liver cells AFTER SVR status is achieved...either shortly after, or many years after.  In fact, it seems that in the great majority of cases, the liver continues to improve over a span of years, often going back to low or no damage status.  If there were virus 'hanging out' you would have to believe that it would begin replicating at some point, and cause continued damage to the liver.

Of course, I will keep an open mind, and consider any other contrary research...but I do not want to start assuming something that may not be true at all.  If we are going to start freaking out about possible liver related HCV coming back to 'get us' we need to see some proof that this is happening...or has a certain probability of happening.

See the link below:

http://www.hcvadvocate.org/news/NewsUpdates_pdf/2.4.3_HCV_Advocate_2001/advocate0107.pdf#search='is%20hcv%20gone%20from%20liver%20after%20svr'

Doubledose
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Here is another very comprehensive article, that looks at both sides of this, and related issues.  It cites various research studies, on both sides of the question.

http://www.natap.org/2002/Dec/121202_2.htm

DD
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One more very relevant article.

http://www.askemilyss.com/bites/bite0103/cure.htm

DoubleDose
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haha I'm with Britgirl and if I make it to 6 month or 1 year post,,,,Clear!  I don't even want to think about that still hiding,,,ready to pop out at any time that my immune system is down.
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Please do ask your doctor for a reference to the study, or where he is getting his information.  This is a very disturbing thought, and we need to be up to date on any new or different understanding of how HCV acts within the body, either before or after SVR.  It could be critical to how we live AFTER attaining SVR.
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I go to the same clinic as you and that is not the info I am getting. While you did do 88 weeks of tx you did just a year of full tx dropping the riba after a year and continually lowering the peg dose after the first year. With the amount of damage you had to your liver, which does affect your SVR percentages, I think going full dose for 72 weeks would have been recommended. I am and was surprised your doc did not recommend this. This is not at all meant to question your choices but just a thought I've wondered about. LL
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I am having a problem with posting here and I don't know why??  Anyway, I've done maintenance therapy on the old interferon, Intron-A.

Susan
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Scott, is this the paper that you are looking for?  It's over 2 years old and was written by the heavyweights....McHutchinson, Poynard, Davis.

HEPATOLOGY, Vol. 35, No. 3, 2002 - "Hepatic HCV RNA Before and After Treatment With Interferon Alone or Combined With Ribavirin".

"Of 400 SVRs, 393 (98%) had undetectable hepatic HCV RNA, whereas 7 (2%) had detectable HCV RNA; 5 have been followed and 2 have had reappearance of serum HCV RNA 12 months after therapy.  In conclusion, measurement of heptatic HCV RNA before or after therapy reflects changes observed in serum HCV RNA and correlates inversely with heptatic inflammation and fibrosis, but otherwise has minimal clinical use."

I have a PDF copy but no way to post the entire document here.  Try Googling the above title.

Hang in there Scott.  I hate this thing with all my heart too and I'm determined to do everthing to kill it.  

Mike.
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Hey Scott,

Haven't been around for a while and was catching up.  Read about your relapse and wanted to express my sorrow and provide some encouragement to you and all.  Regression of fibrosis and even cirrhosis can happen, even without clearing the HCV.  If you recall, I had my first biopsy in September of 02.  Stage at that time was a 4 on the Metavir system.  Compensated cirrhosis.  I went on tx with Peg/Riba combo in January of 03 and stayed on for 9 months.  Never cleared.  I switched to the Mayo clinic where they reevaluated my old Biopsy samples and graded them a 5/6 on the Ishak scale, confirming early cirrhosis.  Was off tx for 6 weeks then started on the alfa(daily CIFN)/gamma/riba tx.  Was on for 48 weeks and never cleared.  After completion, a second Biopsy was done and was graded 2/3 on the Ishak scale.  Not an easy road, but there is hope.  I am sure your improvement will be just as great as mine was.

Hoping you have success with your next attempt,
Steve
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as you said, there several options your team is considering, but given the fact that there was a relapse after 52 wks full dose, I can't see why he would go on maintenance after 12 wks if negative PCR, unless he is not after erradication, only histological improvement.
I think you want to go for full erradication attempt as well as improvement, ... I have a feeling you will do 72 or more at full doses...
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Has this been posted previously?  Along the lines of incomplete/inaccurate results from routine PCRs...

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I don't know about your doc but mine answers emails. Maybe you could ask for that study via email or call the RN and ask him to get it for you. It's pretty important to know that and I think this suggestion is bothersome to some here. Me for one, but I would have to see it to beleive it. I have not seen thios anywhere. LL
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Just wanted to drop my 2 cents around, and well, you know. I don't see the Dr's logic in maintanance. We all know you can take a vitamin supplementation protocol, and halt progression, so why forcefully induce possible other harm from prolonged interferon? If the Dr came at me with that Bullsh*t, he would have some definate explaining to do. I know you are somewhat intelligent, so I can't imagine you letting him not explain himself thoroughly. I see the importance of Biopsy, as it would be first on my list of things to do, But from there, maintanance? Why not retreat full dose. Different peg, or something. You DID respond, you DID kill the beast for 88 weeks or whatever. Why thrown in the towel?? You never did that to me, or anyone else, so why would you do it to the dragon? Don't give me that **** about halting progression, OUR number one priority and goal is for total anniallation!! I'm not trying to put him to sleep, and nobody else hangs around these forums to read the dragon a bed time story, we want death!!! We want a dragon on the damn Barbeque.
I'm sitting here on week 7, of ?, and I'm not even considering any other options. I'm going for the throat, and direct kill or nothing.
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Amusing to say the least. You never believe anything anybody says, other than what you decide credible. BULLSH*T.
Califia is ONE here that you can talk to, and can document that supplementation halted the progression of her liver damage for 14 years. 14 years, when is the next tx coming around?
No vitamins claim cure, nor has anyone every stated such. What they do claim, is suppresion. If you can take supplements to stabilize ALT's, then the virus is not destroying the liver. Forget what ALT's are measuring? I went on supplementation protocol as per many different websites and resources, and stabilzed my ALT's in only 4.5 months. I also dropped VL by 1460.. Can you explain that?
Buddy we have alot of differences, but this is bullsh*t. I have never held back before, so I sure as hell not gonna start now.Are you actually that afraid to tx again, or are you just a Dr's lab rat?Do the research, you know what the web turns up. You responded, the meds worked. Maintanence is for people with NO OTHER options. When all other approaches fail. You did not fail, yet!!!

"It is possible to fail in many ways...while to succeed is possible only in one way"  Aristotle

"Success is not final, failure is not fatal: it's the courage to continue that counts"  Sir Winston Churchill
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AHHHH, ignorance has always been your best virtue. Buddy, just sit back and let the Dr use you as a rat. Don't drop the soap!!
Have we not gone over this before? Why would a Dr recommened a supplement when he owns stock, or gets bonuses for Rx'g certain drugs. Is Scherring not in a 500 million dollar law suit right now for bribing Dr's??
Many Dr's do Rx supplements to treat HCV, but obviuosly not yours.. But on the other hand, your Dr doesn't believe we can be cured either. ****, lets all just throw in the towel. Damn your weak!!
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LLLLLLOOOOOOOOOLLLLLLLL.
Your last comment had me laughing so hard it was difficult to get back up and type this.

Thank you,
Steve
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Intellectual curiosity can be a real life-saver.  That's all I want to say on this subject.    And I'm not talking about  satisfying that curiosity by reading snake oil ads about Hep-C cures on the internet.

I'm with Snook:  annihilation of the virus is a worthy goal.   But if we don't make it, there are indeed other ways to halt progression.   I myself don't want to spend the next few years on chemical treatment.  I've seen the effects of that, close up and personal.   One guy I used to work with (at an HIV/HCV  Buyers Club)  had been on interferon maintenenance for five years  by the time I met him and mostly operated in outer space.   Not good for an Executive Director.  He had been a real mover and shaker and innovator, but had most definitely lost his edge.  Very sad situation.  Cognitive dysfunction definitely happens.....    


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Poor Rev.. I guess we couldn't expect anything more from you. You didn't have enough insight to research your candidate, and you still overlook the facts of research on HCV.
Are you that ingnorant, or just scared? You have to be kidding right? Ok, we'll wipe the slate, and you can correct yourself right now.

Do you understand the consept of what ALT's measure? If you can stabilize ALT levels, liver cell destruction is not happening. The vitamin protocol I took for 6 months, stabilzed my ALT's, lowered my VL, and raised my platelets and CBC's. My mother took the same, and her VL went from 4.1 million, to 2.3 million. ALT's also dropped.
No magic bean, as you seem to linger on, just supplements PROVEN to reduce inflamation (inflammation) and free radical damage.The VL drops, I can not say whether they where just fluctuations, or dou to supplements, just that they happened.  

If you ever open your eyes, wanna make a decision based on RESEARCH like you claim to always go by, email me and I'll point you to some links. Hey, you are waiting six months to restart anyway, take the supplements and see what happens till then. Get your head outta that Dr's arse, it's effecting your judgement.
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Hey Chev,

Absolutely no reason to be sorry.  I didn't answer because I did not get back to the board until this morning, (was too busy still laughing).  You sure hit it right on the head when you said "put it in the back of your mind".  I am one of those who likes to think about this condition as little as possible and usually comes here only to see if there are questions to which I might be able to provide some light.  Believe me when I say that I appreciate your support, and your humor, and hope that you put a smile on many other faces, not just mine (but reserve the best for me).  I'll email you as soon as I get the chance.

Thanks again,
Steve
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I am not sure about the accuracy of stating that normal ALT means no damage is happening...I always had NORMAL liver functions, all of them, and damage was still happening from the virus influence grade 2 of 1rst stage, mild but IT WAS happening even with low ALTs.
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Hey there,

Take a look at this article and I think it will answer your question.

http://www.hivandhepatitis.com/2004icr/aasld/docs/hcv/121004_a.html

Best to you and all,
Steve
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Thanks for that article, in ALL tests we take OUR "normal" might not be the same as the average normal for most,
It would seem that to determine mine, I would need records from many years ago and compare to post dx range, and then post tx ones.  
So when people comment that they halt their liver damage with alternatives, do you think it is accurate to decide that based on the enzymes readings?
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It seems the only answer to that question would be; yes, but only if there are baseline values to compare against.  I would say that these would have to be from a time pre exposure to HCV, post exposure and then current.  Hmmmmm, don't think too many folks have that infromation but would love to see it if they do.

Best,
Steve
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PERSISTENCE OF HEPATITIS C VIRUS IN PATIENTS SUCCESSFULLY TREATED FOR CHRONIC HEPATITIS C

Marek Radkowski, Mayo Clinic Scottsdale, Scottsdale, AZ; Joanna Jablonska, Warsaw Medical Academy, Warsaw, Poland; Jeffrey Wilkinson, Thomas V. Colby, Mayo Clinic Scottsdale, Scottsdale, AZ; Bozena Walewska-Zielecka, National Institute of Hygiene, Warsaw, Poland; Debra M. Adair, Jorge Rakela, Tomasz Laskus, Mayo Clinic Scottsdale, Scottsdale, AZ.



Introduction:

It is unclear whether the current antiviral treatment for chronic hepatitis C virus (HCV) infection results in complete elimination of the virus.



Methods:

We studied 17 patients with chronic hepatitis C who had sustained virological response (SVR) after IFN/Ribavirin treatment (HCV RNA negative in serum 6 months after treatment by Amplicor HCV ver. 2.0; sensitivity limit 100 viral copies/mL). Serum and peripheral blood mononuclear cells (PBMC) were collected 2-3 times at 3-6 month intervals starting 40-109 months (mean 64.2
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thanks Mike for that one, any one knows what interferon was used?
I was wondering if pegylation makes any difference.

Why aren't more people's hcv replicating after their SVR, then? Is this "leftover" hcv even a functional virus?

I just don't see many studies showing positive hcv in the serum  after years of SVR, so makes you wonder if these findings in the 17 subjects is even significant. I guess that is why they always ask for reproduction of results in these studies by a separate source.
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Rev, I am not the only person on this forum that is disturbed by what you are trying to lay out. Many just are afraid or too intimidated to speak up. Go back up and read what you posted.  What it came across as, was that if a person has moderate or severe fibrosis even after SVR, the virus lays dormait or hides in the livers scar tissue. A false PCR.. Is this not what you stated? Why the hell are any of us doing tx if the virus just hides and there is no cure? Do you realize what you are saying?

Many memebers here have ESLD or chirrosis (cirrhosis), and obtained SVR. These memebers remained SVR, and continue to live HCV free. Just because you relasped for whatever reason your Dr has milked your prostate with, don't try to bullshit us. If that was correct, why do any of us treat? Why don't all of us just follow your Dr's advice, and maintain? If we have damage, and there is no hope such as you stated, why go through it right? Please, now is your chance to correct yourself, and try to MAINTAIN a little bit of credibility.

I understand your frustration of relaspe. None of us deserve such a hardship, even you. Anyone who fought as long as you should have reached SVR, and freed themselves from HCV for good. But life has away of playing hardball. All we can do is keep fighting, or crawl into a whole like a rat!

I do ALOT of research myself.. I have read ever study that is posted above, and probably more. I am on every weekly HCV news letter, and I get every update on HCV related bills that go to Congress. What happened to you, is a fluke. Your Dr is scratching his head and wondering himself what happened. Unfortunately he has to give you an answer, so he attempted to give you his best explanation. What we all know about this disease, is there is absolutely NO rythme or reason. NONE!! Every case is different, EVERY person reacts different.

What we also know from many of the EXACT same sites you reference above, is supplementation does help HALT progression. Milk thistle has a protective agent that works so well to protect the liver, the new studies suggest many not to take it if on certain medications as it does not let the meds to filter properly through the liver. That is why many Dr's tell you not to take it while on TX. Vitamin E, and C, have shown to halt and Reverse fibrosis in  lab rats. NAC, has shown to stimulate interferon and actually HELP it regenerate liver tissue in patients on pegylated interferon/riba tx. Many studies on that. Many studies on patients who took just vitamin C and E along with tx, and achieved SVR with greater % than people who did not. You can hide your head in a hole and blame everything in the world, but truth is you responded.. Treatment did what it was supposed to by all standards. You had drop in VL, went undetectable, and stayed undetectable. You just relaspsed. Now you gotta see where your liver stands, probably alot better, and either go at it again, or  give in to a Dr that is in the business to TREAT, not cure.
Question you gotta ask yourself, is do you wanna be free? Do you wanna kill this DRAGON? You once said to me, that the worst fear you have is passing it to your wife or children possibly in a car accident or from some other accident. Do you remember? What has changed?
Find out the condition of your liver, whether or not you reversed some damage, get your fighting face back on, and kill that f##ker. Don't give us this sh*t about if there is fibrosis, we are all doomed. I'm not falling for it. Studies and other memebers here, have proved that wrong, LIFE has proved that wrong.
Open your eyes my man, and show us that confidence you use to have. Not this my Dr knows eyerything, and I'll follow him too the moon. I know your not a follower, we all know your not a follower, prove to us again that you can lead.
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Both of you are absolute Loons!! Chev, we know you are a sex deprived nympho, but do you have to swing off Rev's pathetic little *****?

Who the hell is jumping on magic beans? I'm on tx. I'm killing my dragon.

Who is intimidated to speak up, many because of the childish bullshit both of you just demonstarted.

Mother issues, is that your reasoning? Nothing else to try and rub my face in. I am strong, and moved on. I love my mom, but she can not have any part in my life, where done. I don't need a tissue, or an excuse, I move forward. Can you?

As far as your study, read only what you want. You are lingering on one study. Blaming your relapse on it. Well we can both pull together 10 or more other studies to contradict it.

Enemy? Who was one of the first to offer their support to you Rev? When I heard the news, I WAS devastated. Nobody deserves that. You always need some excuse or finger pointing when you can't win an argument. Don't give me this **** about trying to be amusing, you are acting like the little b*tch you have proven so many times to be. No one needs to argue or debate with you, nobody can. Your mental retardation, or brain under development has denied you from any further education. You are trapped in a world of self delusion. Rev, you are not a leader. I tried to fill you with some confidence, cause you are obviously just overwhelmed and depressed, it shows.
Your response and immaturity prove the exact point I have always stated, your a pathetic little angry looser. Your probably some little guy who sits by himself, a loaner with no friends. You speak out on the computer because in real life you can't. Rev, if we are enemies, I pity you more. The falling down and division in America that you speak about is never been so evident. Despite our diferences, I have extended my hand numerous times, and offered encouragement and friendship. I am infected with HCV, so are you. We ARE brothers, not enemies.
When you remember that,you can start focusing back on the TRUE enemy, HCV..  
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I am still looking up 'flaccid comments'  in my Webster's...
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I must have missed something because I can't figure out where all the anger is coming from. I posted the article. I have known for at least 2 years that there have been instances of the virus being found in the liver even when the plasma was clean. It has also been found in the cerebral spinal fluid and brain. My own surgeon suspected when after testing clear and having normal enzymes my ALT and AST spiked that I may have some viral activity in my liver. Apparently that wasn't the case but he wondered aloud to me if it might be. We must remain optimistic and positive but that doesn't mean we muxt close our eyes to new and possibly negative information. We must remain open and curious and honestly and intellectually curious. Mike
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hahahaha flaccid comments??  The studies are great because none of us know enough about hep c and apparently the drs are all still puzzled by it so if you throw out a negative study,,,,Like you say,,,read it and if anything...it has me searching more on the topic.  None of us want to believe that after clearing,,,its still there in the liver but terror....I don't think so.  Been there done it with the initial finding out of the disease. All we can do at this point,,,,is what we know of today that will kill the virus and that is interferon.  
I don't understand how Snook's mother got pulled in on this though.  I know at one time he was having problems with her but if members post something and then we hold that against them at a later point,,,Everyone will be parenoid.  That is not the message we want to convey here.
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Rev...of course we want SVR to equal cure...  And I also want interferon to lock in SVR. Thats exactly why I'm taking it.  Otherwise,,,,why even bother taking the tx?
As far as Snook,,,I have never read of him saying he is impotent LOL....Sorry Snook
I do know that several men have stated here that while on tx,,,,They had problems but that is normal and due to the meds.  I wonder if we should list these men and chant how they can't get it up....LOL
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ROTFLMAO!!!
Rev:
It is soo funny how when you can not win a argument, you resort to anything possible. Please, show me where I have stated anything you mention. Please, let my wife explain my third leg..
Buddy, I'm 27, do remember when you where that old? I know it's been decades, but do you remember?
"I'm young, hung, and full of ?".. Wait, maybe you can not remember that same senario. HA HA HA!!!
I remember the posts and conversations at both forums, and the impotence and "MINI ME" ****** was a problem of YOURS. We might have to search the archives, but it is there.
As far as adopting me, please.. OH boy, you got me figured out. I've always wanted to live with a family of anti-american facists. Maybe we can plan the next attack or something. Yippee!! The professer, HA HA HA HA!!!!! You get even funnier. The only professer you could ever play, is Holly Berry in Gothika, as they would lock you up and medicate you. And by the way, did you and Indy not battle it out for days over how tx does not effect the mind, YOUR words remember?

Mike:
There is no fear, no anger as these loons have suggested. This is a support forum. Other memembers have been run off for comments like that. Thanby, remember? People are undergoing tx right now, and the doom and gloom is not called for. I have read the studies also that suggest HCV lying dormait in the liver even after undetectable PCR. I have also read the studies that many have remained SVR for years. There is a 52-60% chance of SVR for gen 1's, so that info enough for me. Cancer patients go at TX with only 5, maybe 8% chances. We are looking pretty good from my seats! The problem in this situation lies between myself and Rev. He has held a grudge against me ever since I made him look like a fool on his political beliefs over at OOB. He openly stated he "wished me to fail my TX". It was just as crazy as every other of his comments, so it went in one and out the other. Its the others that jump on his wagon that **** me off. Have a good day my man, you earned it.

Ms Chev:
Where should I begin? What role do you play in this conversation? What do you stem to gain? Where has your name come into the argument? We have seen this over and over again. Then, the apology. By the way, is Rev the new boyfriend you have that relapsed? You told us all about him, geno 1 and all. Is it? You sure attacked me like a jealous girlfriend defending her man. When should I expect all the sympathy emails about how sorry you are, and what an @sshole Rev is? Do you remember those?
Hypocrits are a dime a dozen, leaders and motivators are of a dying breed. Remember WHICH you are trying to portray.
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Well, I've had my fill(no pun) of phalic disorders, so I hope they soon fizzled out...

Snook: it is not doom and gloom to post studies that show both positive and negative outcomes, ignorance is not bliss when dealing with hep c.  


What I would like to see is more details on the liver condition in these subjects, was there fibrosis or cirrhosis that account for the virus remains in liver tissue?
Often, we read studies abstracts and briefs and take it to heart without taking into consideration that it might not relate to us, because these people had more severe damage or were still engaging in harmful behaviors.  We have one study that shows 15 subjects with no HCV in their liver years after SVR and we have another one that does find it. So, the next thing I want to know is what were the details not mentioned in these studies? Does anyone know how to access the full study? If these subjects had severe damage, I can't apply the results to my personal situation. We all hang on to some hope, we have to.
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