Long Term Outlook

[pjhep80]

im wondering if anyone on here has been infected for like 40-50 years and what stage/grade... i have always heard that something like only 20% infected go on to liver failure but is this data based people infected 20-30 years ago or what?  what are the stats on people infected 40 years and beyond?

im infected 28 years or so, grade 2/stage 2

please add your stats to this thread thanks!!

[burned74]

I probably got it from IVDU in 1974. I am 50 now.
My biopsy in 2004 showed stage 2 grade 2.
Treated unsuccessfully then.
I am looking for teleprevir in a couple years and will also incorporate some of the things I learned on this forum such as

predose riba.
peg shots every 5 days for first several weeks.
add alinia

Since I needed neupogen during my first treatment I would not want to chance doing clinical trials where I would be denied rescue drugs and waste my teleprevir chance.

By the way, I have a friend whose dad probably got it from blood transfusion over 50 years ago and I know he is in his late 80's. He is a social drinker but not a heavy drinker but at this point he figures what the heck.

[koala68]

The genotype of your virus will tell you the kind of HepC virus you have. For instance genotype 1 (one of the most common) is harder to treat than genotype 2 so people with G1 have to treat twice longer than G2 (48Weeks instead of 24Weeks).  

[Mary4now]

Very interesting.  My hepatologist indicated that my hepC might be a less virulent form.  I didn't quite get that, but your explanation may be more in the right direction.
I will be getting my blood tests done in another month or so.... Just to see whats what there.  What a drag.... hep c
I also think things could change either way at any time.  So I just feel like a little time bomb trying to stay below the radar until I actually start to treat.  

[jmjm530]

If I remember correctly, one study used age 40 as a benchmark for younger age of infection.

Related:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1415847

".On the other hand, female sex and younger age at infection are regarded to be associated with a lower rate of progression.."


http://linkinghub.elsevier.com/retrieve/pii/S0953620507003536 (you would need to order the article to verify)

[portann]

Can't in any way speak to the value of this study and I'm sure there are others if this is not quite what yo had in mind:

"The outcome of CHC could be favourably influenced
by female gender and young age at infection,
as suggested by Minola and coworkers.22"

See http://www.medigraphic.com/pdfs/hepato/ah-2008/ah082c.pdf

Hope all is well.

[epiphiny]

"Studies show that being infected at a younger age shows both slower progression and also positive predictor of SVR"

Could you elaborate a little further, jmjm?  What age is considered a younger age?  Does it mean infected during infancy or childhood,  or late teens, early twenties?  I imagine it's relative, are there any studies or figures you could point me towards?

Many thanks!

Epi :)

[pjhep80]

thanks so much for replying i think this thread is really showing how different this virus is for everyone... keep it coming!!!

im much encouraged here about waiting a bit, i was infected young, between 18-21 yrs old, im 46 now stage 2/grade 2 and i bet i would be stage 0 or 1 if i had not drank so much for the last 20 years or so lol ...  now that im not drinking  , eating right, lots of water, milk thistle, etc i think i have some time to wait for better tx, find out what the dr thinks on the 13th ... and i am going to get another biopsy soon, its been 4 years

[apache1]

38 years for me. Geno 2b
fibroscan showed 6.8
On tx,  my 13th week of 24

Probably middle of the road fibrosis, but
imo without an accurate laprascopic bx you really do not know for sure what your liver damage is unless symptoms or your blood work, ultrasound, etc, is showing signs of cirrhosis.

apache

[Trinity4]

"If I thought I was between stage 2 and 3 would not have treated when I did and probably still would not have."

I don't like the number 3 in any staging of liver disease whether it's on the low side or the
high side.  Sixty five isn't always the magic bullet number when cirrohois begins.  An inaccurate liver biopsy result can also be given indicating a lesser stage of damage than actually exits.  We know this happens too.  

[jmjm530]

Just want to add that being female (you not me LOL) is also associated with slower fibrosis progression, along with being infected at a young age.

[jmjm530]

Time of infection to treatment around 37 years.

Best guestimate after having four unafiliated pathologists read my  biopsy slides is that I was between stage 2 and 3 when I started treatment, possibly closer to stage 3 with bridging not fully mature.
FWIW I made a treatment decision based on what a previous hepatologist incorrectly told me, i.e. that I was between stage 3 and 4. This was not even accurate per his pathologist's report, and I now wonder if he was either ignorant, sloppy or just loose with the facts to scare me into treatment. There is also the possiblity that I didn't interpret properly what he told me as I knew almost nothing about staging back then.
If I thought I was between stage 2 and 3 would not have treated when I did and probably still would not have.

In any event, SVR after 52 weeks of combo. Studies show that being infected at a younger age shows both slower progression and also positive predictor of SVR, or at least one of them, have to double-check.

They also show that stage 4 (cirrhosis) tends to hit many of us around age 65 regardless of age infected. So, if you don't want to treat make sure to have your liver monitored on a regular basis and even more frequently as you head toward 65.

-- Jim

[eureka254]

My husband's infection most likely is about 40 years.  He is Geno 1, currently Stage 4 cirrhosis (and may have been for some years unbeknownst to us).
He was in the unfortunate 5-10% who contracted liver cancer as a result of his hep c, but was one of the few lucky enough to have it surgically removed.  He is currently treating, having just started yesterday, in hopes of preventing his Score A cirrhosis (compensated) from progressing to Score C (end-stage).  

[fretboard]

I traced it back since 1973 that's 35 yrs.  I had HepA before that, in 68 or 69, so in 1973 I went to the hospital cause I was having that same feeling of nausea and tenderness  under my ribcage.  Last bx stage 1 to focally 2 fibrosis grade 1, in 2005, just had another last month.  Not so bad, but in between all that krap I've been in a couple accidents that caused broken bones and now osteoarthritis.  I've also had problems with toxicity leveI and swelling of hands and feet.  I start tx on 11/13.  

[alijee]

in janurary 2003 i drank in a marriage party. Next day i felt leg pain. Things got worsen day by day. i lost appetite and became week. leg fatigue and pain was realy concern. After all iwas digonosed hcv infect. sgpt was 149 at that time. now im on my 8th week.

[Mary4now]

Wow, very interesting,, there must be so many people who have it and dont know it.
I think i've had it for 38 yrs. last look in 2/08 I was stage 1 grade 1, G1, millions of the buggers.  
Waiting for my next blood, to see if I can wait a bit more.  I just cant seem to get straightened out in my life (work) to make a go of the treatment.  I'll keep trying though.
Good luck to everyone.... M

[CMcH]

I have probably had it since 1976 and I am 1a grade 1/1. In the last couple of years I started having some autoimmune problems, Thyroid & RA that lead me to TX.
Now I feel like **** at 24/48 but have been UND since 4 wks. Brain fog is getting bad.
I am glad I read this tonight it reminded me that it is Friday night, shot night.
Where is that Friday night fight song when you need it?

[koala68]

Most likely for 40 years since had blood transfusion at birth. Only discovered it in 2005. Biopsy the same year showed stage II, Grade II fibrosis. I was very active in my youth and drank a lot of coffee all my life, so that may have helped too.

[tahoeunicorn]

I most likely got HCV when I had a blood transfusion when I was about 12 hours old. So I have had it for 46 years. I am Geno 3a. Non-responder to first try, beginning VL was 19,600. my dr said that it was the lowest VL that he had seen. started SOC 11/07 and ended 2/08, never had the 2 log drop, my BX from 05/07 showed stage 4 grade 3 cirrhosis.

[orleans]

1971-G1-stage3-now treating w/ SOC+Alinia(off label) UND at 2 weeks- 14th shot Sat nite. jerry

[HCA]

I had two risk episodes with drugs in 1978 which was undoubtedly the cause..Therefore I can claim thirty years.
I still have it with advanced fibrosis-possibly cirrhosis.
Ultrasound and MRI show nodular reconstruction on edge of liver,however fibroscan is consistently around 8.8 kps which is not cirrhotic.
I became symptomatic in year 2000.
Treated three times as non-responder and once as relapser.
Liver functions persistently normal.
I am hoping to participate in the Telaprevir phase 3 trials starting next month.

[Marcia2202]

geno 3a, baseline vl 1.3 mil, infected ca 25 years

In week 12 of tx

Could not have a biopsy, but 2 ultra sound scans showed no signs of cirrhosis nor abnormalities.

Symptomatic with severe fatigue and brain fog since Feb 08, dx in March 08

Marcia

[PegOnPeg]

I'll assume that I got infected in the 80's, tho it's progressed to Stage 2-3 over, what seems, a short amount of time, compared to others posting here.  I did get some blood during a procedure in the early 70's...It's hard to say.

Tonight was my first shot of, at least, 48..G-1, VL 13,500,000

[Isobella]

I could guess at about 28 years.  I am geno 1a, Stage 1, grade 0.  Viral load 1,040,000.  Presently in week 15 of tx.  

I was diagnosed "by accident" while being evaluated for RA.  I had no symptoms-other than the pain in my right hand that led me to the RA doc in the first place.

Isobella

[mkp13]

I got it in 1963 when I was 5 years old.  Blood transfusion during heart surgery.  So I've had it for 45 years.  When diagnosed last December I was stage 1 grade 2 with viral load at 6.23M.