Infected 45 years and still only F1? Is it possible?

[mike716]

Hi, guys. It's me, Mike the forum lurker, back again with another mind-twister question that will no doubt cause dissention and get me into trouble, but here goes:

Has anyone here ever heard of someone having HCV for over forty years and still being only at the F1 stage of liver fibrosis?

This is the story (I say "story" for lack of an adequate censor-passing epithet) that my hep MD has been feeding me for a year now. He says that from my medical history I probably got infected from contaminated blood when I had a motorcycle accident at the age of nineteen (I am now 65) and was transfused at the hospital that treated me for concussion.

Personally, I think this story is a lot of self-serving hooey, and that in reality I was infected by a bad dentist here in Argentina just a few years ago.

My biopsy six months ago showed F1-F2 fibrosis, but my blood markers and GGT have been going steadily upwards in a continuous progression through eight blood tests over the past 14 months, and I definitely do not have the energy I had even one year ago.

So, my hep MD thinks that I was infected 45 years ago and am a very slow progressor, and I think that I was infected a coupla years ago and am progressing rapidly.

This is not an academic question. My hospital is postponing treatment based on their diagnosis: they think I can wait a few years for a better tx. Whereas I think I may have cyrrhosis before they ever get to my next biopsy.

What say you all? Is it possible to be F1-F2 after forty-five years of HCV?

Mike

[meg115]

Hi Mike there is a new drug called Harvoni (by Gilead) that cures Hep C from 8 to 12 weeks.
All the best wishes to you and all in this forum!
Meg

[mike716]

It's been a while. I'm glad to see you're still around in the forum. Old friends are the best friends.

I haven't forgotten your great line: There is no such thing as a healthy patient you only simply have not been examined enough.

M.

[mike716]

I was unaware of that information. Thank you very much for bringing it to my attention.

M.

[Bali05]

"Total reliance on a 24-week post-Tx blood PCR is just a pleasant illusion, in my opinion. It suits everyone (MDs, drug companies, insurance companies, etc.) except us."

I could have said something like that about 5 years ago ....lol.

Wishing you nothing but a smooth and successful tx so you can finally get cured of this horrible disease.

There are a lot more options than 5 years ago too.


Cheers
b

[JimmyMose]

Good point I was working on a similar reply last night

Sustained virological response: a milestone in the treatment of chronic hepatitis C.
abstract(Excerpts)
AIM:To evaluate the long-term eradication of hepatitis C virus (HCV) infection and liver-related complications in chronically infected patients that have achieved sustained virological response.
METHODS:One hundred and fifty subjects with chronic hepatitis C (CHC) or cirrhosis and sustained virological response (SVR) between the years of 1989 and 2008
SVR was achieved by interferon-based therapy, both conventional and pegylated, with and without ribavirin treatment
RESULTS:The median follow-up was 8.6 years (range 2-19.9 years). HCV RNA remained undetectable in all patients, even in patients who eventually developed liver-related complications, indicating no risk of HCV recurrence.
CONCLUSION:Patients with CHC and SVR show an excellent prognosis with no risk of recurrence and a very low rate of mortality. Our data indicate that virus-eradication following interferon treatment can last up to 20 years
http://www.ncbi.nlm.nih.gov/pubmed/23687416

20 years so far is pretty damn good especially for those of us over 60 years old.

[can-do-man]

"Total reliance on a 24-week post-Tx blood PCR is just a pleasant illusion, in my opinion. It suits everyone (MDs, drug companies, insurance companies, etc.) except us."

Studies have shown way more follow up then just 24 weeks. As posted below..."and showed that serum HCV RNA remained undetectable in 1300 samples, indicating that none had a relapse with up to 18 years of followup ." to me 18 years is a pretty solid track record.

One of these studies followed 344 patients for a median duration of 3.3 years (range, 0.5 to 18 years) after completion of interferon-based therapy with an SVR, and showed that serum HCV RNA remained undetectable in 1300 samples, indicating that none had a relapse with up to 18 years of followup . It is unclear if late detection of serum HCV RNA after an SVR in a small number of patients represents true relapse, especially if the detection occurs only once or is intermittent and with use of a very sensitive assay. Although additional followup studies may provide further clarification of this distinction, an SVR appears for now to be durable and an accurate reflection of a cure.

http://hepatitiscnewdrugs.blogspot.com/2010/10/hepatitis-c-treatment-long-term-effects.html

[mike716]

Have his MDs said that a 12-week course of the new DDAs w/o IFN is contraindicated for his present treatment?

Mike

[mike716]

No problem about the hijacking. I'm happy that an old thread turned out to be useful again. I think we all learned something here.

Regarding Bali05's post, that's a psychologically comfortable position to take, and trusting the MDs and labs implicitly the way you seem to do may give you peace of mind, but telling people not to be vigilant or scientific or objective isn't such a good thing to do, is it?

Nobody knows yet what the full extent of the consequences of infection are, and won't for many years? And how can you have such total faith in what the drug companies say, when they are in competition for cure rates?

Total reliance on a 24-week post-Tx blood PCR is just a pleasant illusion, in my opinion. It suits everyone (MDs, drug companies, insurance companies, etc.) except us.

Best to rely on one's own vigilance, don't you think?. I don't believe in magic bullets, myself. I hope I'm wrong, but. . .

Mike

[nan535]

Thanks so much  for your suggestion. My husband unfortunately has another serious complication that the pathologist says is also responsible for his new cirrhosis. He has extensive bilary tree damage  caused by a hepatic artery blockage found  two months post transplant. Because of this, I doubt he would be a good candidate for this trial. He has been through hell so he just wants to stick with this treatment recommended by his doctor.

We are both looking forward to the day we hear he too has reached SVR.
But I promise when we do, we will remain vigilant!  Everything he has been through these last three years won't let us be anything else.

Nan

[can-do-man]

Nursehepc..."Your post has been hijacked (how did that happen? Grin)."

That's OK, the thread is 5 years old...:). Besides your post was great. Suzy all I will say is I hope Hep c doesn't end up biting you in the backside like it has so many of us. Trust me the CURE is much better then what can be the end results... Good luck

[nursehepc]

Your post has been hijacked (how did that happen? Grin). I will now slither back into the shadows again. Joanne.

[nursehepc]

You inferred that you understand that the virus, irregardless of how pure ones' lifestyle is, can and will progress to ESLD for many. This is not disputable, but is also not predictable. Some folks are lucky (consider yourself lucky - I hope your luck continues). Some people live a lifetime with no ill effects, and some progress to ESLD, some clear the virus with treatment and some don't (hopefully that is changing-it seems so),

No one doubts or disputes that a pure and healthy lifestyle is essential to not aggravate whatever the virus, on its own, will do.
Please do not use accusatory language (illustrated by all CAPITALS) that infers that those who have not been as lucky as you may not have not been living a healthy lifestyle. Its insulting and ignorant.

Many of us are choosing to live a healthy lifestyle AND seek treatment to erradicate the virus. Its a wonderful thing to have choices.

Good Luck. Joanne.

[Bali05]

Once you are cured of HCV infection there is no need to be vigilant or scientific ect..... The virus is considered eradicated.

You should go back to a normal healthy life with normal routine check ups. A prudent thing to do is to include an ultrasound with your normal check ups because of possibly still increased HCC risk. An ultrasound
is a very easy non-invasive procedure and the chance of cure from
HCC when caught early is just so much better.

That`s it. You are cured !

What treatment is concerned ,yes, you need to be very vigilant in terms
of taking your meds on time , right dosages and run the most sensitive
PCRs you can get your hands on and run them at the critical times during
your tx. Unquantifiable is not Undetectable.

It is amazing how far we have come in the last few years. When I first
signed on to this forum the cure rates for Geno 1/4 were still  around
50% at best and that only with many many months of PegINF/RBV.

b

[suzy2000]

When I say healthy lifestyle I mean no alcohol or drugs that cause the immune system to work harder.  Many people with Hep C just can not stop the alcohol and then wonder why they are taken down so rapidly.  Actually, I was told not to take medications foreign to the body, ( even antibiotics or an Aspirin) unless absolutely necessary.  This causes the body to work harder to fight the virus. Perhaps I was told this because, for me antibiotic cause me to acquire cytomegalo virus.  Explained to me that my blood became confused, not only destroying the virus but was destroying my good red blood cells. The minute a foreign substance enters the body your cells begin to fight.  The medications caused the confusion.  I became very low on red cells, my skin paste white. Even a sunburn would not show. This was years ago when I was at my most ill point.  When Scripps took me off all medication, my blood improved within two weeks and later I became better and better with each year to living normal. So, Bali05, you see I was speaking of healthy lifestyle as No harmful substances consumed. I have seen several people with Hepatitis C that refuse to stop partying or just drinking alcohol until they are jaundice.  And also I HAVE NEVER BEEN JAUNDICE through all my trials with this Hep C.  

[mike716]

Hi, Nan. Thanks for your kind post. Terribly sorry to hear about your husband's misfortunes.

I wonder if your husband's HCV infection increased after transplant because of increased virulence of the virus, or because of the immunosuppression required by the transplant?

Would he be a good candidate for the Phase IV trials of the new DAAs? If they can cure his infection now, after transplant and reinfection, that would be kudos for the new drugs. Might be worth looking into.

Mike

[nan535]

Thank you for your excellent post.  I totally understand what you are saying.  My husband experienced this when he went on triple treatment. He lasted only 5 weeks because he became very anemic and decompensated. Yet the virus remained "unquantifiable" for 8 months until his liver transplant. We were warned that the virus WOULD return after transplant  (not "might") and of course, it returned, much more virulent than before. He now has cirrhosis of the new liver.

From what I'm reading, these new drugs work differently in that they prevent the virus from replicating.  Once treatment ends, for some, the virus returns but for most, it remains undetected.  So even if some of the virus may still be in the body hiding,  the patient has a much better quality of life going forward.
No one can really say for how long. BUT, on the other hand, it may never replicate again.

I believe that anyone having gone through this Hep C experience,  even after achieving SVR, will nevertheless forever remain vigilant of this old nemesis.
God willing, they will never meet up again.

Thank you again for your post. Knowledge is power for everyone.
Nan

[mike716]

Hi, all!

Just thought I'd put in my two cents on the question of "cure". I've had some experience with this still-debated issue, as I worked for five years on a bibliographic research project on HIV at the Pasteur Institute in Paris. And while HIV is not HCV, they are both viruses that work slowly to destroy you.

The thing about viruses, or at least most viruses, is that they are intracellular pathogens. This means that they go inside cells, primarily in order to use the cell's machinery to replicate themselves. Thus there is always the posibilty of cells, whether of the liver or some other tissue, harboring the virus even though blood in blood vessels shows no trace of viral RNA.

This is what is probably happening when people do Tx, achieve SVR, and then relapse later on. It's not necessarily because the VL tests used to determine "undetectable" were too insensitive to register the few virions still in the blood. It can also be due to virus that was not in the blood stream, perhaps not even in the liver, replicating again in cells in sufficient amounts so that some virions end up in the blood.

When a pathogen is under attack it tries to protect itself, to survive. One method of doing this is to mutate, maybe even to become more virulent. Another way is to stop presenting viral antigens on the surface of infected cells so that the immune system can't spot them. Still another method is to hide inside cells and stop replicating, at least for a time.

Smart doctors who treat infectious diseases, and the microbiologists who search for ways of fighting pathogens, have become hesitant to speak of "cure" when it comes to viruses. Too little is known about the strategies of viruses to hide and survive. For example, some of the herpes viruses can apparently hide in nerve cells for decades and reappear to cause all sorts of lesions.

We all hope that achieving HCV undetectability in the blood (SVR) also means that it no longer exists in the liver and in the rest of the body. But this virus has only been studied for 22 years, and the current chemical treatments for even less time.

People who achieve SVR need to be vigilant. And those who have had the infection for many years without major symptoms need to not fall into complacency, believing that it will be so always.

We need to be objective and a little scientific. After all, we are part of a huge experiment going on in nature between the human species and the hepatitis C virus. Who will win?

Mike

[nan535]

I think you have done an incredible job taking care of yourself and your liver.
I would just like to say that amazing things are happening in medical research in general. I do not agree with you that Hep C can not be cured but I certainly agree that you are entitled to your opinion.

This video is why I believe the best is yet to come in HCV treatments and prevention:
http://www.youtube.com/watch?v=8gRJMaCa3IM&feature=youtu.be

I respectfully suggest you keep yourself open to the possibility of being cured of this virus sometime in the near future.

Best.
Nan

[mikesimon]

Amen!

[Bali05]

"......live a healthy life style and perhaps it will not come back "

Oooh please not this again......

When you are cured you are cured. The virus is considered eradicated .


b

[mikesimon]

Apparently some Scripps doctors believe that HCV can be cured.

"Scripps Research Institute Scientists Achieve Most Detailed Picture Ever of Key Part of Hepatitis C Virus

A Silent Killer

There has long been an urgent need for an effective vaccine against hepatitis C virus. Once confined to isolated geographical regions, the virus spread globally during the 20th century, chiefly via blood transfusions, unsterilized medical instruments and re-used hypodermic needles. Although hospitals have screened blood products for hepatitis C virus (HCV) since the early 1990s, as many as 200 million people currently are thought to harbor the virus. These include more than 3 million people in the United States, where the virus is responsible for more deaths each year than HIV.

HCV was able to spread so widely because it typically causes few or no symptoms when it infects someone. In many cases it establishes a long-term infection of the liver, damaging it slowly for decades—until liver cirrhosis and/or cancer develop. “It’s known as a ‘silent killer’,” said Law. Expensive and risky liver transplantation is often the only way to save a patient’s life. Some antiviral drugs are useful in treating and even CURING CHRONIC HCV INFECTION, but the more effective ones are extremely expensive—and most HCV-positive people don’t even know that they’re infected and need treatment...."

http://www.scripps.edu/news/press/2013/20131128hepatitis_e2.html

[suzy2000]

I wrote an explanation but my post was not permitted.  I think because I voiced facts I leaned about the FDA and Pharmacy/doctors profits. Sorry, I have no faith in the FDA.  It is each persons choice weather to treat or not.  I see top doctors once a year at Scripps research foundation.  I travel to San Diego from Texas.  I stay in the institution a few days of testing once a year.  This is the hospital where all the movie stars go to be treated and it is very costly per day. These doctors at Scripps will not lie or cover for another doctor who has made an error. Through an experience with my sister, I know this for a fact.   I DO NOT YET HAVE CIRRHOSIS. That's quite good considering I have had this virus for 45 years.  But I realize there are different strains of the virus.  I do not drink alcohol and never have. As far as being cured with the horrible treatment, I still say what I have been told.  Eventually the virus shows its face until there is an absolute cure. Example, if one was to start drinking a lot, the virus could resume. I believe when they say you are cured, it is simply dormant, just like a cancer can be dormant and suddenly show its face. I tell you the truth. Many doctor tell me the virus hides.  All I am saying is if you think you are cured to live a healthy life style and perhaps it will not come back.  I choose not to take myself through horrible treatments and my doctors say this is okay for me.  My faith, I know the Lord will bless me with enough good years.  Did not mean to discourage anyone.  To each his own.    

[Dee1956]

Hi I just saw this and wanted to say that I am cured.  Many many of us are cured.  The virus is gone, my blood work looks better than is has since the late 80's.

I have a family member who had HCV and treated it a few years before I did, he is cured.

I know a couple of others, not on this forum who have been cured for many years.

The odd thing about him is that he got it when he was about 14 so had it a very long time til 48 or so.  He drank for many many years. A 6 pack a night and a case on the weekends.
He was an F2.  The doc could not believe it so he tested him again.  Then told the guy that he was very lucky not to have more damage.

Take care

[ceanothus]

I wish you continued good luck and especially hope you are fortunate enough to outlive your HCV. I just shudder at the thought of liver failure being the end, as from what I've seen and read, it is an exceptionally unpleasant way to end life, and I am extremely happy and relieved that I no longer have this virus attacking my liver. Mine was getting way too close to the end of the line, with full cirrhosis having been present for at least 10 years, and I couldn't risk any more damage from the virus. It has been undetectable in my blood for over 2 years now, since about  6 weeks into my final treatment for it, and my hepatologist tells me that while my liver may never fully recover, it will be gradually getting healthier all the time. I do use some supplements to try to help it get healthier, and I think they are probably more effective when their good work isn't constantly being undermined by continued viral activity.

We do each have to make our own decisions however, and you clearly have very strong personal beliefs regarding treatment and perhaps about the medical profession itself.  I just hope you continue to feel good and to be content with your choices. Best wishes!