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.

[klonny55]

I am a genotype 2 as well. I am mostly likely going to wait for the sofosbuvir/ribavirin combo that is likely to be approved for 2s and 3s by the end of this year from what everyone is saying, I hope they're right about that. I can always fall back on the current treatment if necessary. I won't give it more than a few months of waiting.

Congrats on your SVR, I'm very happy to hear that you are doing better!

[rivll]

Sorry, yes I was in a clinical trial in San Francisco.

[rivll]

Hi,
I was geno2 and it has been very effective for geno2, even with cirrhosis.
I am not sure of the stats for geno1.
I was very ill near endstage and was feeling real bad so I found the riba hard to take. However for most people it is pretty easy and some have no sx.

I feel much better now and my liver is recovering nicely. :)

I definitely recommend it! Good luck to you and pls keep us posted on how it goes.

[klonny55]

Hi rivll, were you in a trial? How was the treatment for you? I am not cirrhotic but am curious how it went as this is the treatment that I will most likely be doing in 6 months (hopefully)

[rivll]

Genotype 2, had virus for at least 30 years.Cirrhosis. SVR after TX with sofosbuvir and Ribavirin 2013.

[sammyandb]

25 years stage 1

[willbb]

meant to add:

Originally Dx. 2001  St.0

[willbb]

Contracted 38 years ago...  .early St.2 (as of Jan..2013 Dx. by Fibroscan/biopsy)

Will

[klonny55]

58 yo male. Probably got it in the mid-80's while working as an EMT. Diagnosed in March 2013. First biopsy June 5, 2013 showed stage 2-3 grade 3 portal/periportal, grade 2 lobular. No symptoms at the moment, I feel very good actually! Have my follow up with the hep department tomorrow to discuss next steps. I am genotype 2b . They will most likely say to wait until the interferon free treatment for gen2 is available sometime around the first of the year.

[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.

[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)

[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.

[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!

[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

[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 .

[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.

[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

[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.

[can-do-man]

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

[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

[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]

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

[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).

[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.