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184420 tn?1326739808

Long Term Outlook

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!!
34 Responses
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96938 tn?1189799858
Before treatment I had been infected about 33 years. I'm pretty sure I've narrowed the time down pretty closely.  I had made it to early cirrhosis.  The longest infected that I've read here is Andiamo.  If I recall, he can trace his back to the '60's. Jmjm also has a pretty long history, exceeding 30 years - I think. All svr, by the way.
Helpful - 0
Avatar universal
I was just diagnosed. As close as we can determine I've had the virus for about 40 years. I'm stage 3, grade 3 and beginning treatment in the next week.  Given that I've had it so long I could probably have simply kept on, but it would no doubt have become dangerous with 10 to 15 years. I plan to live longer than that so I've decided to seek treatment.

Helpful - 0
619345 tn?1310341421
45 years!!!
62 next week and was 17 when misdiagnosed with Hep B with all my other friends in our circle
have had several  relapses over the many years and symptoms just got worse and worse over the past 10 years
FINALLY with a Dr. who asked all the right questions and took the time I was recently diagnosed with Hep C genotype 1b viral load 47,300,000 grade just below 2 and stage just below 1  

All other blood tests  eye exam heart eco cardiogram ekg insulin resistance thyroid and full blood work up came back normal I will begin treatment  on Pegitron and Riba the end of the year  
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Avatar universal
I was diagnosed in April of 08.  I traced my medical records back far enough to know that I had elevated liver function tests  and low WBCs ever since at least 1985...but none of my doctors ever told me.

I am pretty darn sure I got Hep C from one of two ways.  I was born in 1954 and had to have a transfusion when I was 2 days old.  That is most likely where I got the Hep C.  If it wasn't that transfusion, then the other choice is that I got it in 1974 when I worked at Mayo Clinic.  I had my wisdom teeth removed by the dentist that I worked for there.  He did not put me in the hospital but rather he did it right in his office at the Clinic and I can still remember to this day how he had to practically crawl into my mouth to get my impacted wisdom teeth to come out.  It was horrible...I think he misjudged how deeply rooted those suckers were.  Very traumatic.  The only reason I feel the wisdom teeth event could be a source of Hep C is because I don't think dental instruments were sterilized as well then as they are now.

So, I  have either had Hep C for 54 years or for 34 years.  My liver bx in May was Grade 1/Stage 1.  I started TX  on 9-5-08.  I'm genotype 1B and I was undie at week 4.
Helpful - 0
362971 tn?1201987034
   I just SVR'd. But as far as I can tell I had the Virus for between 30 and 35 years. I was stage 3 and my GI told me I could live with Cirrhosis 15 to 20 years if i developed it.
  
   I didn't want to take a chance. I didn't want to start feeling the problems of decompensated cirrhosis in 10 or 15 years. I am 56 and very healthy otherwise so I want to have a robust and healty retirement. I did not want to spend it sick and going to DR's all the time so I decided to treat.

  In my case it was the best thing I could of done.    As far as 20% going on to Liver failure that is not neccesarily true. This is a relatively new desease as it was not discovered until 1990. They expect a lot more people to need transplants as this population ages.

Bobby
Helpful - 0
388154 tn?1306361691
I´ve most likely got it 1971 on my second  treat now.
Did a biopsy nov 07 litle more then one month before starting this tx was grade 1 stage 0.

Dont know if i can trust that biopsy though, have had severe symptoms for more then 20 years such as extrem fatigue, stiffnes in joints and muscles, lower back pain, insomnia,  coughing fore years and more weird stuff.

ca

Helpful - 0
338734 tn?1377160168
I have most likely had HCV since 1967, but it is possible that I got it later in the military in 1972. In any case, I have likely had it for about 40 years. I was not diagnosed until 2000. In 2005 I was in ESLD and required transplant in 2006.

Brent
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Avatar universal
Most likely infected in '71.  37 years.  Stage 3.  Never had any symptoms.  Diagnosed 10/07 only because I developed a disorder called Porphyria Cutanea Tarda which is usually associated with Hepc exposure.  Ironically, PCT probably saved my life.
Helpful - 0
223152 tn?1346978371
Seems like they are tracign this back to about the time of the Vietnam war - not much before, I don't think  Somewhere I have seen the history of Hepatitis C and I will try to find it.  

It was sometime between 1969- 1971 for me, I believe and I have very little damage.
frijole
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Avatar universal
For me...i got it in 1980....29 years may as well say 30
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Avatar universal
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.
Helpful - 0
412873 tn?1329174455
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
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Avatar universal
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
Helpful - 0
476246 tn?1418870914
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
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Avatar universal
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.
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Avatar universal
1971-G1-stage3-now treating w/ SOC+Alinia(off label) UND at 2 weeks- 14th shot Sat nite. jerry
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356052 tn?1260205104
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
288609 tn?1240096756
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?
Helpful - 0
374652 tn?1494811435
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
Helpful - 0
634590 tn?1293774093
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.
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408795 tn?1324935675
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.  
Helpful - 0
419309 tn?1326503291
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).  
Helpful - 0
Avatar universal
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
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