slow down fibrosis

[nooga]

i am 51 y ole with hep c  recently my scan suggested  cirrhotic changes ,i am non responder,after 4 times of treatment .
how can i slow down this cirrhosis process   ?
any ideas ?  thanks

[Trinity4]

Let me reiterate what nygirl said.  Before attempting any supplement therapy please see a qualified liver doctor and discuss your options.  Even if the supplements appear harmless it does not mean they will be harmless to you because no one except a qualified medical professional knows your individual history.  You may endanger your health further by starting supplements and opting not to consult with a qualified professional.  Safe and improved liver histology is not guaranteed with supplements just because certain individuals on this forum advocate it is so.  

Trinity

[Claire_MHModerator]

Thanks for all the suggestions to help nooga make an informed decision!  I've made a list and hope I've included everything that's been suggested:

* everyone's disease progresses differently
* 3 cups of coffee per day
* no alcohol
* sensible diet (low carb / low fat / high plants)
* sensible use of otc meds
* exercise
* maintain healthy weight
* consider Losartin if hypertension's present
* consider the possibility of transplant or tx with new
  drugs next year and be proactive in anticipating the possibility:
   -seek hepatologist at a transplant center -
   - get listed for a transplant (check out Boston, where you'll  
     probably have better luck than NY and LA)
   - no operations or anesthesia
   - get vaccinated for Hep A&B, pneumonia and flu
   - scan for liver cancer q 6 mos
* consider antifibrotics after checking out research
* obtain bx to confirm cirrhosis
* read everything you can about current protocols for therapeutic
  and preventive care, adjusting for current state of decompensation
* talk to a medical professional instead of Internet knuckleheads

And with that, this discussion is closed.

**********************NO MORE POSTS***************************

[nygirl7]

Ask a medical professional who is not bias that is the best idea.
We are only knuckleheads on the internet. :)

[mhudnall]

The original question was:

"how can i slow down this cirrhosis process? any ideas ?"

One option given is to treat again using INF. This does not address the question. INF tx does not address cirrhosis or fibrosis.

Another option given is a non-answer - liver transplantation. This is not an answer to the question, it is the result of failing to find an answer.

A third option given is to use science-based nutraceuticals. Harmless, and possibly effective. Many people on this board have used HR's supplements with great effect. This is the option that I choose to address my fibrosis.

Do your research, look at the facts, and please make an informed decision. In general, I would beware of uninformed opinions based on preconceived biases (not that anyone on this board would do this!). If there are reasons to support a position, then they should be able to be articulated and heard. If they cannot be articulated, then beware that advice.

[willing]

See Fig. 2 "Current status of targeted antifibrotic therapies in preclinical or clinical development" from:

"Antifibrotic Therapies: Will We Ever Get There? "
http://www.springerlink.com/content/25g827154j696057/

Note that while oxidative stress is recognized as a  key player in activating stellate cells, there are many other players in the field.

[Trinity4]

"In my opinion, it is best, if you are not treating, to protect your liver with science-based supplements and anti-fibrotics."

AS STATED BY THE FOUNDER OF THIS FORUM ON THIS SAME EXACT SUBJECT

***************************************BUYER BEWARE*************************************

[nygirl7]

As always we all advise that you talk to a medical professional before ingesting any supplement.  We do not know your medical history or conditions and since we are not doctors on your case it would be best to speak to a qualified heptologist who is aware of all your medical issues. After all this is the internet and although most people certainly have your best interests at heart - we are not doctors and even someone like HR who we have known here for many years as he treats hep patients and is always looking for things to help (as a researcher)  he is not your personal doctor.

We wish you the best and hope that you take care of this condition on all fronts and get well. Please don't get discouraged and just stick your head in the sand, continue to follow up with all the medical suggestions that we have given.

[Trinity4]

"My position is that doing nothing will not keep you alive"  

Please stop with your supplement or die nonsense.  That is simply not true.

Trinity

[mhudnall]

In my opinion, it is best, if you are not treating, to protect your liver with science-based supplements and anti-fibrotics. Tx and supplements are not mutually exclusive.  HR has listed many important and beneficial substances in previous posts, such as the one listed below:

http://www.medhelp.org/posts/Hepatitis-C/Research-supported-antifibrotics---do-they-exist/show/346752

Here are some:

PPC - pharmaceutical grade Polyenylphosphatidylcholine is a prescription drug for hep c in Europe. Scientific studies by Dr.CS Lieber have shown that PPC is involved in reversing fibrosis in alcoholics and animal models.

Biocurcumin - is involved in the apoptosis (programed cell death) of activated stellate cells. Activated stellate cells clamp down on hepatic vessels to decrease blood perfusion. They also are responsible for secreting collagen (scar tissue) into the extracellular spaces in the liver.

Transresveratrol - prevents fibrosis, NF kappaB activation, and increases TGF-beta in carbon tetrachloride induced fibrosis in rats.

Alpha Lipoic Acid - extremely hepatoprotective, high antioxidant potential and a precursor of glutathione.

ALA, N-acetylcysteine and glutamine - are precursors of glutathione. Hep c is notorious for seriously depleting glutathione stores in the body. Many of the negative consequences of hep c are due to the depletion of glutathione in the body, and by supplementing the precursors of glutathione you can help decrease the oxidative stress on your liver.

There are many more valuable hepatoprotective substances that shold be in the conversation. I would encourage anyone not treating to peruse the excellent post by HR listed above.

[Trinity4]

Like I said, you can take your supplements until the cows come home but you have no guarantees, you discourage biopsy which is the only true indicator of liver fibrosis or iron overload of the liver that occurs between minimal and advanced stages and you give advice to people regarding supplements who should clearly be seeking professional medical help..  You are dangerous and you have no clue when you advocate your supplements whether it is good or bad because you don't know the health condition of each and every individual.
Just because you have chosen to live with hepc for the rest of your life doesn't mean squat.  Great if you works for you but it doesn't mean you or anyone else will own a home free card because of it.

Trinity  
  

[Trinity4]

I don't care if you or anybody else's take supplements the rest of your life and die of old age rather than cirrhosis.  You can't say for certain your liver disease won't progress with supplements just as I can't say mine won't progress without them.  Seems like I'm in pretty good shape without them but when you stop taking them your enzymes sky rocket.  Hate it for you and the bottom line is the disease progresses differently in everyone and your damn hepatoprotective antifibrotic regiment guarantees NOTHING

BTW, would you recommend the AEMD hemopurifer before, during or after antifibrotic use?

So how about jumping off my you know what because I too am sick to death (oh yes, death is looming because I'm unhepatoprotective) of your sales pitches.


Trinity

[nygirl7]

Dear Mike H,

Nothing wrong witih adding supplements for liver health; but not INSTEAD OF medications that are proven to be more effective than just regular peg which would give him a good chance of being CURED so if necessary he could NOT have the virus when he transplants.

Nobody said he should not protect his liver or do the best he can to live a healthy life while he is looking to CURE his hep which is CAUSING HIS CIRRHOSIS - what we said was the only real valid medical opinion that we could share with someone in his position. This man has no time to play these speculative games with you and he needs to be thinking of what to do to stay ALIVE.

ALIVE.  We'd like to see him live.

[mhudnall]

Good for you, but while you are waiting for a biopsy, doing nothing at all as a protocol may be running out your clock.

I'm six years after failed treatment, F3 by biopsy also six years ago, and fibrosis has not progressed in six years. I also have low viral load, normal enzymes, and I am doing a followup fibroscan this fall and anticipating fibrotic regression. I'm pretty sure there has been no progression of fibrosis, because I have been very religious with my science-based supplements. I'll let you know what my fibroscan says.

[Trinity4]

Hey Mike,

One year after failed treatment, low viral load, normal enzymes, perfect blood values with no science based antifibrotic therapy.  I'm having a biopsy in November, I'll let you know how that goes.

Trinity

[mhudnall]

You claim that for Nooga, "...time may be running out", and that "...waiting too long can be fatal...". But Nooga has tried treatment four times and failed. The AASLD guidelines you cite above should not be unfamiliar to him, being a four-time non-responder.

You seem to imply that he should not try anything that the AASLD does not endorse as standard therapy. It seems to me that this course of action (times four) has been exhausted and has proven unproductive. Meanwhile, while he is waiting to treat again, it seems to me that he should do everything in his power to protect against the progression of fibrosis.

Your comment about time running out seems to me to be especially applicable to prophylactic anti-fibrotic therapy. These substances have a lot of science behind them, and all indications are that they work to decrease the progression of fibrosis. There is no science that indicates otherwise. Just because AASLD does not specifically endorse anti-fibrotics as standard therapy at this time does not mean that anti-fibrotics are not effective. The AASLD also does not endorse antioxidant therapy, and yet that has been proven to be extremely beneficial for hep c.  They don't endorse milk thistle, PPCs, ALA, NAC, TMG etc. Should he wait until mainstream science catches up with the current science, when, as you say, he has little time left?

I think your AASLD guidelines have not panned out for him (4x), and it is time to try science-based antifibrotic therapy.

[HectorSF]

Nooga should first get a biopsy to confirm stage 4 cirrhosis.
Assuming nooga has cirrhosis CPT class A, B,or C...

Cirrhosis is a late stage of hepatic fibrosis that has resulted in widespread distortion of normal hepatic architecture. Cirrhosis is characterized by regenerative nodules surrounded by dense fibrotic tissue. The damage has been done probably over decades. At this time antifibrotics are not part of the standard protocol for the treatment of HCV or cirrhosis. Speculation from articles from 10 years ago is fine for people who have time but for many cirrhotics time my be running out. Waiting too long can be FATAL.

The standard protocol for treatment of HVC liver disease is shown below.

American Association for the Study of Liver Diseases
AASLD PRACTICE GUIDELINES
Diagnosis, Management, and Treatment of Hepatitis C:
An Update: April 2009
Marc G. Ghany, Doris B. Strader, David L. Thomas, and Leonard B. Seeff
This document has been approved by the AASLD, the Infectious Diseases Society of America, and the American College of Gastroenterology.

Preamble
These recommendations provide a data-supported approach to establishing guidelines. They are based on the following:
(1) a formal review and analysis of the recently published world literature on the topic (Medline search up to September 2008); (2) the American College of Physicians’ Manual for Assessing Health Practices and Designing Practice Guidelines; 1 (3) guideline policies, including the American Association
for the Study of Liver Diseases’ (AASLD) Policy on the Development and Use of Practice Guidelines and the American Gastroenterological Association’s Policy Statement on the Use of Medical Practice Guidelines; 2 and (4)
the experience of the authors in regard to hepatitis C.

Intended for use by physicians, these recommendations suggest preferred approaches to the diagnostic, therapeutic and preventive aspects of care. They are intended to be flexible, in contrast to standards of care, which are inflexible policies to be followed in every case. Specific recommendations are based on relevant published information. To more fully characterize the quality of evidence
supporting recommendations, the Practice Guidelines Committee of the AASLD requires a Class (reflecting benefit versus risk) and Level (assessing strength or certainty) of Evidence to be assigned and reported with each recommendation

* Patients with HCV-related compensated cirrhosis (CTP class A), can be treated with the standard regimen of pegylated interferon and ribavirin but will require close monitoring for adverse events (Class I, Level A).

* Patients with HCV-related decompensated cirrhosis should be referred for consideration of liver transplantation (Class I, Level B).

* Interferon-based therapy may be initiated at a lower dose in patients with decompensated cirrhosis (CTP class B and C), as long as treatment is administered by experienced clinicians with vigilant monitoring for adverse events preferably in patients who have already been accepted as candidates for liver
transplantation (Class IIb, Level B).

* Growth factors can be used for treatment-associated anemia and leukopenia to improve quality of life and may limit the need for antiviral dose reductions in patients with decompensated cirrhosis (Class IIb, Level C).


Regards,
HectorSF

[mhudnall]

Treat with interferon or transplant? Those are your only two options?

What about protecting your liver from fibrosis? Are you saying that HR's protocol is not worth the effort? Are you saying definitively that anti-fibrotic substances do not work?

This seems to be extremely bad advice to me.

I would say that the most prudent thing to do is protect yourself if you are not treating.

Mike H

[nygirl7]

As Hector said:

Each persons disease progresses differently. Basically there is nothing you can do at this point but proactively plan the 2 major options you have. Treat with new meds next year and hope for SVR or prepare for a liver transplant. I would recommend preparing for both.

I think it's better in this case to be over prepared then just doing nothing except trying to live healthy hoping that will take care of it.  Cirrhosis is not the type of thing that is just going to go away but while you are being healthy and watching all of the things that you are ingesting to take the stress off of your liver you should be seeing a top notch hepc doc and taking the steps he mentioned.  

It is very good advice.

[mhudnall]

In addition to the substances listed above, here is a study on trans-resveratrol which concludes that activated stellate cells (responsible for scar tissue formation in the liver) can be deactivated by resverotrol.

http://www.ncbi.nlm.nih.gov/pubmed?term=%22Couronné%20B%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract

[mhudnall]

Here is an older post by HR on modern antifibrotics:

http://www.medhelp.org/posts/Hepatitis-C/Research-supported-antifibrotics---do-they-exist/show/346752

PPC - polyenylphosphatidylcholine is important, as well as antioxidant therapy (botanical antioxidants and anti-inflammatories such as curcumin and milk thistle), and glutathione precursors (alpha lipoic acid, n-acetylcysteine and glutamine), plus TMG, etc.

To assume that fibrosis cannot be reversed is a big assumption. You should be protecting your liver at all times - before and after tx, absolutely.

Mike H

[HectorSF]

I'm sorry to hear about your cirrhosis. Each persons disease progresses differently. Basically there is nothing you can do at this point but proactively plan the 2 major options you have. Treat with new meds next year and hope for SVR or prepare for a liver transplant. I would recommend preparing for both.

I assume you are still compensated? No ascites, esophageal bleeding,hepatic encephalopathy, etc. If so then you probably have time to wait until telaprevir and boceprevir come to market next year. Soon there should be data available showing the odds of SVR in cirrhotic patients with telaprevir. The odds should be much higher then with current SOC treatment which from your experience with previous treatments is extremely low. Less than 10% usually.

Meanwhile I would look for a hepatologist at a local transplant center. If the new meds fail or if your disease progresses to the point where you can't treat your HCV you want to be known at the transplant center ASAP so you can get on the liver transplant list as soon as possible. Unfortunately the New York/NJ area has the second longest wait list for livers. Northern California were I am at has the most people waiting.
FYI: If you could go to the Boston area for example, where there are less people waiting fro livers you could probably get a transplant sooner. Or there is the option of a living donor if you have a younger person who is willing to give you part of their liver. There are many things to consider and this is a life changing decision. But don't wait too long as your options will become more limited over time.

You need to be under the care of a hepatologist at a transplant center so they can manage your health until if and when you need a transplant. It will make the whole process of getting listed easier. Getting listed can be a challenging process depending on insurance coverage, your family and friends support people who you will need to get through a transplant, etc..

Basics while you wait:
Remember no alcohol, drugs, operations/anesthesia or anything that will hurt your liver. Consult with your doctor first. Get vaccinated against Hep A, B, pneumonia, and a current flu shot if you haven't done so already. And of course every 6 months get scanned for liver cancer (HCC).

Best of luck.
I hope you get to try the new STAT-C meds.
HectorSF

[spectda]

How long has it been since you last treated, what genotype do you have? What did you treat with? Are you going to have another biopsy?

Some suggestions that may help. Stay at a healthy weight, diet not too high in carbs and fat, exercise regularly, drink 3 cups of coffee a day, Perhaps look into some supplements like milk thistle, but be careful about what you take.

If you take blood pressure medicine losartan may be helpful to use as your medication. There have been some studies that suggest it can slow or reduce fibrosis/

http://www.wjgnet.com/1007-9327/11/7560.pdf

RESULTS
Effects of losartan
The changes in fi brosis stage were signifi cantly different
between losartan group and controls (a decrease of 0.64±
1.3 vs an increase of 0.89±1.27, respectively; P<0.02) (Table
2). In the treated patients, a decrease in fi brosis stage was
observed in 7/14 patients vs 1/9 control patients (P<0.04).
Three of the seven patients showed a reduction of two or
more points in fi brosis stage. No differences were observed
in HAI after losartan administration. Sub-endothelial
fi brosis evaluated by image analysis of lobular areas was
signifi cantly reduced after losartan administration, without
changes in the control group (Table 2 and Figure 1). A
significant correlation was found between fibrosis stage
and sub-endothelial fi brosis (Spearman’s ρ 0.36, P<0.03).
A signifi cant increase was observed in albumin level and
platelet counts in the treated patients.
Additionally, no signifi cant differences were found in
any clinical or biochemical parameters between responders
and non-responders to losartan, except that patients who
responded to losartan had higher baseline serum alkaline
phosphatase than non-responders (309±132 IU/L vs 194±
25 IU/L, P = 0.009

Good Luck,
Dave

[Diane12855]

They say that 3 cups of coffee a day helps. Make sure you don't drink any alcohol. Remember that the liver filters everything we eat, breathe, and get on our skin, so if it is toxic, stay away from it. Low fat diet with lots of fresh fruit and veges and little red meat is also helpful. Make sure you never take more than the recommended dosage of OTC meds and wait the total time between doses, even if it feels like it has worn off.

There was another person on here who had done tx 10 times and failed. She is a very active exerciser and her last biopsy showed that her liver was in better condition than it used to be, so the exercise could have been the reason for that.

Diane