How long for you and how much damage?

[Mike1A84]

Heres a queston for everyone.How long have you had hep c for?and what
kind of damage to you have at this point.For me I have had it for almost 20 years and was stage 1 grade 1 in the beginning of 2011.anyway feedback would be nice.

[purplecat]

I was exposed to HepC in 1971.  Showed up end of 1999 blood tests. had biopsy 2000 was stage 0, had biopsy 2005 was stage 2, grade 0.  Treated 2006-2007, relapsed. 2007 Started anti Fibrotic regime with diet, exercise, RLA, NAC, PPC, Curcumin, resveratrol, milk thistle and a few others recommended by Hepatitis Researcher on this site.  Biopsy in 2008 stage 2, grade 1,  Biopsy 2013 stage 2 grade 2.  I'm being monitored every 6 months with AFP and liver panel tests.

[pooh55811]

I think I got it in 1975. Diagnosed 2011.  

So I guess I had it about 36 years when I had the biopsy in 2011.

Biopsy 2011 was Grade 2, Stage 2.

There are other factors that may be important too. I am a female. I was 65 years old when I had the liver biopsy. I never did drugs although I did drink alcohol socially/moderately. I did use hormone replacement Tx for about 15 years and that may have been a factor in slowing fibrosis progression.

Treated Sept. 2011 - Aug. 2012.  Attained SVR.

[Mike1A84]

Any more comments for this thread?

[cheflady]

hi Mike my hubby 8wk post tx he got his about 34/35 yrs ago he turned yellow head to foot and in those days not much info about for hepc was told not to drink or have sex for a yr! and sent on his merry way!! he found out last yr through a routine blood test that he got it so after reasearch mainly through this site he decided to have tx he did triple tx with incivek(Teleprevir). He attained UND from wk4 and he did 24wk tx we are now waiting to see if he attains SVR which we will know 6mth post tx. Hope that helps best wishes Jules

[desrt]

Probably exposed 1973. SVR 2003. Pre-tx biopsy listed damage as mild, basically stage 1. Post-tx ultrasound showed NAFLD which now appears to have resolved.

[BoceprevirGal]

  Hi Mike, it's nice to hear from you :)  I had it for over 20 yrs, and was a stage 2, grade 3 when I treated, and my platelets had just began to slip to below normal..not a good sign. As I got worse,my Alt/Ast also elevated to 10 times as high as normal, a good warning sign for Heppers.
   Sofosbuvir is being approved this December. My husband is now in a Phase 3 Trial, with anothe new drug regimen, made by AbtVie, which includes Abt 333 and a couple other DAA's, and Riba, and it is only 12 weeks, and no side affects.
   So..you are in good shape, to Treat again!  By the way, people who have already Treated with Teleprivir/Boceprevir are responding to these 2nd generation PI's just as well, with at least a 96% cure rate, so this is great news!

[orphanedhawk]

I think I had it for 30 years when diagnosed with hep C and decompensated cirrhosis. My husband has it too and his liver is fine. It's a fickle virus.

Now, post transplant and post tx, I am hep C free and healthy though it has taken a toll on me, for sure, I'm glad to be alive and doing as well as I am.

[shocked60]

Have had it since 74 from blood transfusion. Minor liver damage. 24 weeks triple tx Und from week 4 until week 24. Waiting for 6 month blood test. Hoping for SVR.

[Advocate1955]

My hubby probably got Hep C in the mid-70's.  Biopsy in 2007 diagnsosed f1-f2.  Has treated 3 times (2007, 2010, and 2011) and failed all 3 treatments.  2nd biopsy in 2010 diagnosed f-4.  Still compensated.
Advocate1955

[medic54]

This shows the problems with diagnosing an entire liver by means of one or two needle size samples from the same region. I find it highly improbable it took 30 years to progress 1 1/2 stages and then only 4 years for the remaining 2 1/2.

[medic54]

Add my above comment to the inherent variability of the individual histology technologists and biopsy's seem almost pseudo science. My doc is most def pro biopsy, and when I confronted him with my feelings on the inherent variables summing to significant discrepancies...he agreed but followed with- "but it remains the most accurate test to date". BTW- I most likely contracted it in 1972 (but like most, have know way of knowing), was diagnosed non A/ non B in 1992, first biopsy 2012 (F-3), moderate alcohol use (yes.. I know) but no other drugs all this time and genotype 3 (never sub-typed). So 40 years from f-0 to f-3 maybe (at least 20 + with ~ 6 beers/wk all this time) but to many variables to really know. There are controlled studies on the net which paint a more accurate assessment. One I read showed a longer span from 0 to 1 and 2 to 3 ( 9 years average I believe) than from 1 to 2 and 3 to 4 (6 years average each...if I recall correctly). It was a study in Karachi, which would have been predominately geno 3 (faster progression type).

[Advocate1955]

I don't know if you're referring to my hubby's situation, but, yes, that's exactly what happened. 2007 liver biopsy definitively showed between f1-f2. Results of abdominal ultrasound and CT scan were consistent with early fibrosis, no cirrhosis. 3 years later, liver biopsy definitively showed f4 beginning Cirrhosis, and abdominal ultrasound and CT scans were consistent w early Cirrhosis. His hepatologist had the pathologist re read both the 2007 and the 2010 biopsy slides to be sure that the progress was that quick. I'm sure you are aware that progression of fibrosis is not necessarily linear or at a steady pace. Some variables that may affect rate of progress may include length of disease, gender, genetics, ethnicity, and age of the individual. I want to be sure to spread the message loud and clear that fibrosis CAN progress quickly because it did for my husband. I am also here to say loud and clear to everyone with f2 and above treat when there are treatment options available to you.
Advocate1955

[desrt]

Agree progression is non-linear. Your husband's situation (little progression over years, even decades and then a 'sudden' jump of a couple stages) is not unusual.

"Some variables that may affect rate of progress may include length of disease, gender, genetics, ethnicity, and age of the individual."
Also age at which infected and all the factors that make up 'metabolic syndrome'  --  insulin resistance, cholesterol, hypertension, etc.  --  seem to play a role.
If I were doing "watchful waiting", I would get a biopsy more often than the every five years that is sometimes suggested.

[Advocate1955]

Yes, in his case, he had the biopsy in 3 yrs, as Dr recommended, and had labs every 6 mo as Dr recommended...
There were no other treatments available at the time, so there wasn't anything different that he or docs could have done, even if they had known he was progressing so quickly.
Advocate1955

[can-do-man]

Two very good posts by Advocate and desrt.......... We have seen this here many times...........

[pooh55811]

I agree with Advocate, Desrt, and Can-do.

I also agree with Advocate on the following statement and wish to repeat it: to everyone with f2 and above treat when there are treatment options available to you.

We see far too many people on the forum who have already progressed to F3 and F4 and who wish they could have treated earlier.

[Advocate1955]

Yes, sadly we have quite a few friends on this forum who have ESLD and/or HCC who are trying to be listed for a life-saving transplant or are listed but there are others ahead of them who are even more I'll and higher on the list. Right now we have friends on this forum who are suffering from severe and life threatening complications of decompensated cirrhosis due to Hep C and who are frequently in and out of the hospital trying to stay alive while they wait for their new liver. To those of you trying to decide whether or not to treat, consider yourselves lucky if you even have an option to treat.
Advocate1955

[medic54]

"Furthermore..hepatic pathology is not always uniform, particularly with fibrosis"... Cleveland Clinic re- first thread of  my Google search 'liver, needle biopsy accuracy'.
Not saying you should not get one, indeed mine motivated me to do treatment, but I don't put a lot of faith in being stage 3 because of some unknown techs interpretation of a needle biopsy... most liver area could be stage 2 or (and a lot more likely considering 40 years) stage 4. When I questioned my doc about the electroelasticity test he referred to it as "the giggle test" and said it's accurate at either extreme but not much in differentiating between stage grades. To me, when I here grade ?, I say probably but maybe + or - 1, maybe 2 over the entire organ. Just saying, several decades in medicine of seeing reversals and absolutes proved wrong has made me quite skeptical... not to mention the inherent accuracy errors in each device/ methodology... add the occasional incompetence and the only things certain are these tests results are far from absolute and unless you do a lot of medical study reading you'll be the last to know how certain/uncertain they really are. The wedge biopsy is suppose to the most accurate but obviously more invasive as it removes much more tissue.

[Kadeeta]

Thank you to all of you for your  posts --I have read them with great interest ,It is a great community  -I am lucky to found it.Thanks again .

[belle19]

i got it in 1974.  diagnosed december 2010.  liver biopsy 2011 stage 2 grade 2.  went into a clinical trial may 2011...finished may 2012.  SVR november 2012.  life is great!  i never had one symptom, ever.  best wishes.  belle

[ceanothus]

I had numerous possibilities for exposure from medical procedures done in a third-world country in 1981-1982 and from a transfusion here in the U.S. in 1984. In 1989 my biopsy was stage 1. I treated unsuccessfully but didn't have another biopsy until 2004, when I was stage 4. There was no question of it being just a bad little area, as that one was a "wedge" biopsy done during a major abdominal surgery with my entire diseased liver fully exposed. It was not a transplant but was a difficult surgery that required the skills of an exceptionally talented and experienced transplant surgeon, and when he later described my liver condition to me he really didn't expect it to last much longer. I treated unsuccessfully again from 2005-2006, and then my third tx in 2012-2013 finally worked. I've been SVR for three months. Contrary to expectations, my cirrhosis is still compensated!

[GrammyA]

My tenure with this horrible disease may be the oddest one so far.  I was exposed to it from multiple blood transfusions when I was 8 months old - in 1953.  I am now 60 and genotype 1b with cirrhosis.  In 2000 I was Stage 1 and failed treatment in 2001 being removed from treatment after 14 weeks.  In January of this year I finished 24 weeks of the triple with Incivek and was undetectable at 4 weeks post but detectable at 12 weeks post.  I was Stage 4 cirrhosis in 2004.  Now I wait until something else comes along that might remove the virus - and pray it will be a treatment that will not kill me in the process.  I could only do 24 weeks this last time instead of going the full 48 due to extreme side effects and indicators that the treatment would cause permanent neurological damage if I continued.  Just had another MRI to see if a tumor in the liver is still under control and oddly enough my AST and ALT are now both absolutely normal and the lowest I have ever seen them... go figure.

[frijole]

I have had 3 biopsies.  The first was in 2005 before I treated the first time and it was G1, S1 - not bad for having Hep C for 35 years or so.

Second biopsy was in 2007 after a failed treatment - still G1-2, S1-2.  Not bad, I thought.

Third biopsy was in 2011 before I treated with triple. - G3-4, S3-4 - cirrhosis!  Total shock.  Age in 2011 was 64.  

Don't be tricked into thinking you have escaped liver damage.  Damage starts excellerating as you age and things can turn quickly.  I had the slides read by 3 different doctors and they all said the same.  It impacted treatment -- had to do 48 weeks, rather than 24 (or 28 in my case with Victrelis) but I am SVR now and glad I treated. (and, by the way, damage in the liver is more or less uniform so core samples do give a good reading of the state of the entire liver).

I hope to have another biopsy in a year or two to see what has happened to my liver.

frijole (bean)

[Dee1956]

I think I got it in 1977.  I was tested in 96, came back neg, was false neg.
After 30 years I was in the very beginning.. transitioning to cirrhosis, yes it makes me feel better to say it that way :).
I was not diagnosed until my platelets fell to 65K.  I had cryoglobunlemia for 2 years before that, not one of the 3 docs I showed it to made the connection, they told me it was nothing to worry about.  Now I am SVR and all the spots on my legs are clearing up.  I was told they would never go away as they were iron stains from my blood leaking out.
I feel better than I have in many many years.