Maintenance Therapy

[miked]

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?

[mikesimon]

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

[Califia]

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   Because you're retraining the immune response, hopefully, so it doesn't shut down when the drugs are withdrawn and the old inability to recognize and eradicate the virus reappears.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.  

[BNR]

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

[miked]

Thanks Scott.  Please keep us informed about your bx results and what's next.  Mike.

[Califia]

Gotcha.   Sensible approach.  And then the question is about quality of life.   Could you go indefinitely on 90 mcg?

[BNR]

I'm keeping my fingers crossed for you. Enjoy your "time off."

[Califia]

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.      

[DoubleDose]

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

[britgirl]

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.

[DoubleDose]

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

[DoubleDose]

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

[DoubleDose]

One more very relevant article.

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

DoubleDose

[honey1616]

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.

[DoubleDose]

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.

[layla]

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

[susan400]

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

[miked]

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.

[Southernboy]

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

[cuteus]

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...

[cao]

Has this been posted previously?  Along the lines of incomplete/inaccurate results from routine PCRs...

[layla]

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

[snook_man]

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.

[snook_man]

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

[snook_man]

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!!