Home Forums Main Forum Patient Stories F3 to F1 in 12 years while still HCV positive?

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  • #9207
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi Bloot, how ya goin?

    That sounds like a great result on the fibroscan! I think there is reasonable cause for optimism that in your case the results may be fairly accurate…..but understand your caution and wish to keep to the original Tx plan.

    Judging from the tale above, and some previous ones we have heard from you, you made some very significant changes to your lifestyle upon diagnosis. I imagine your liver was extremely….and eternally….grateful when you stopped beating the living crap out of it at every opportunity. ;)
    So when it suddenly didn’t have to defend itself against its owner on a daily basis, it was able to fend off the HCV a little better and at the same time it had enough reserve capacity to make use of its marvellous ability to regenerate, enough to regress the worst of what was probably largely self inflicted damage rather that from the hepatitis.

    OTOH bad attitudes don’t regenerate so you are out of luck there mate. #roflmao

    (better point out here that I’m not having a go at Bloot, my attitude and behaviour was not too dissimilar to his. It was just a bit too late for my unfortunate liver by the time I was diagnosed. :()

    On the subject of fibrosis measurement accuracy, I like the summary provided by the specialist assigned for my initial consultation after diagnosis. A very funny man with a wicked sense of humour. <img style=illy:' />

    – Autopsy is the gold standard…..but due to the significant risks he didn’t recommend them for most of his patients.

    – Biopsies were definitive but really only for the immediate area around the sample sliver due to the size of the liver and the fact that fibrosis was not necessarily an uniform process. Safer than the first option but still some risks.

    – Fibroscans were indicative but with sufficient readings across a larger area did give a pretty good idea of of the level of fibrosis although with a margin of error that was difficult to fully quantify. Much safer and these days (2012) his recommendation in most cases.


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #9240
    Avatar photoSirchinenge
    • Guardian Angel
    • ★★★★★
    @sirchinenge

    I had a fiber scan in May 2015 I was 9.9 and a F3 I started treatment Oct 29 for 12 weeks
    I had a Fiber scan last week it was 7.4.

    The consultant said the last reading probably had some inflammation this reading was
    accurate. Same guy also said the margins can change over time from F3 -F2-F4……..

    In your case, you had one done a long time ago, I don’t think its odd you have no come back with
    a lower score you state you changed how you lived your life I would assume it helped to keep
    your liver in decent condition.

    Yes, I think its very feasible your live healed some what in the time period your describe.

    Good news all round for you.


    Sob/Dac from Oct 29 2015
    Geno 1b
    Fiberscan 9.9 Pre treatment
    Fiberscan 7.4 week 10
    VL 1.3 million pre treatment
    Week 2.5 VL 96
    Week 5.5 VL 17
    Week 10 VL UD
    SVR 3 UD
    SVR 16 UD
    Cured:
    All liver functions in normal ranges.

    #9256
    Avatar photoEnkel
    • Guardian Angel
    • ★★★★★
    @enkel

    biopsy is not very accurate. I have heard people doing biopsy at different times and places with different results, it depends on where the cells are taken, liver is relatively large. Fibroscan is more accurate


    Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
    Started Twinvir 12/12/15.
    Two weeks
    ALT 17 at 2 weeks
    Viral Load UND at 2 weeks
    ALT 13.5 at 7 weeks EOT
    ALT 10.5 at 15 weeks EOT
    ALT 13 at 27 weeks EOT, VL UND, Cured

    #9257
    Tommy
    • Guardian Angel
    • ★★★★★
    @tommy

    Can’t disagree more. Research fibroscan and see the percentage of accuracy compared to biopsy.


    Genotype 1A
    ALT 473
    AST 226
    Virus Load 3,119,030
    Results as of May-2016
    5 week viral load/undetected as of 12/02/2016
    Liver Biopsy Results from Feb 2013
    Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
    Focal Lobular chronic inflammation (Grade 1)
    Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
    Negative Iron stains.

    #9260
    Avatar photoSirchinenge
    • Guardian Angel
    • ★★★★★
    @sirchinenge

    I’m with you Tommy if Fiber scans are so accurate how can you explain so many
    patients going from examples of F3 too F2 within months often without treatment.

    I would think its down to a fiber scan is a much simpler procedure as opposed to a biopsy I believe
    the offer of treatment on your fiber scan is a crude method to use.

    I would love to know the answers, if you depend on a Fiber Scan for treatment you could be
    waiting for ever.


    Sob/Dac from Oct 29 2015
    Geno 1b
    Fiberscan 9.9 Pre treatment
    Fiberscan 7.4 week 10
    VL 1.3 million pre treatment
    Week 2.5 VL 96
    Week 5.5 VL 17
    Week 10 VL UD
    SVR 3 UD
    SVR 16 UD
    Cured:
    All liver functions in normal ranges.

    #9264
    Tommy
    • Guardian Angel
    • ★★★★★
    @tommy

    Fibroscan does one thing good. It can usually distinguishing hepatic cirrhosis from non-cirrhosis. It measures liver stiffness. Some will do the fibrosure test(serum marker tests) but it’s considered experimental and investigational for detecting or monitoring hepatic fibrosis in persons with hepatitis c.
    A friend had a Fibroscan which showed definite cirrhosis (F4). The FibroTest 3 months later came in at 0.54, or F2.
    Biopsy is a best bet. IT DOES NOT HURT.


    Genotype 1A
    ALT 473
    AST 226
    Virus Load 3,119,030
    Results as of May-2016
    5 week viral load/undetected as of 12/02/2016
    Liver Biopsy Results from Feb 2013
    Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
    Focal Lobular chronic inflammation (Grade 1)
    Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
    Negative Iron stains.

    #9283
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    “Biopsy is a best bet. IT DOES NOT HURT. ”

    On what planet would that be?
    It’s true that the liver does not feel pain but the liver sac which contains it sure does. When that biopsy needle punches through it you know.

    Don’t mean to scare anybody here who is going to get a biopsy. Just – if you are offered pain meds, valium, etc. – take it.

    dt

    #9285
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    I had a liver biopsy, can’t remember how many years ago, and it did not feel good., It was a weird, very un-natural jolt of pain and did not feel good afterwards. Needed pain meds, I would not want to have one again if I could avoid it.


    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    #9296
    Avatar photore_roll
    • Guardian Angel
    • ★★★★★
    @re_roll

    Boot….Your story is interesting. My frame of reference is my viral load. It went from 9 mil in 2008 to 1.2 mil
    last year. Never had a fibroscan, but had a biopsy done by someone who had done thousands. He is a
    professor at a local university. He knew what he was doing. Anyhow, he went to the worst part of my liver
    for samples. My results came out fairly decent after 40 years of infection….F1 or 2 I think. I partied hard for
    several years but did not turn into a dirtbag :P.

    Yes, I firmly believe your lifestyle change can help in liver scarring. I won’t go into details and derail your
    thread. I’ll post mine later. In the back of my mind, I still want the fockers out of my body. Therefore, I would
    continue with TX to be sure. Continued success, man. A little of this and a little of that is not going to kill
    you, IMHO. Good luck.


    contracted Gen 1a in the 70’s, dx in 2007…ast 27 to 35…alt 43 to 96…vl 1.2 mil to 8.6 mil.
    biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
    tx started 2/11/16…. lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
    28 days later………….lab results 3/9/16 ast 21, alt 21, vl UND
    56 days later………….lab results 4/6/16 ast 20, alt 22, vl UND
    139 days later………..lab results 6/29/16 ast 28, alt 30, vl UND…EOT
    SVR24

    #9298
    Avatar photodarbara
    • Guardian Angel
    • ★★★★★
    @darbara

    Mine went from 14 to 27 kpa in 6-7 months. Now is that possible when I dont drink ?
    The guy who did the fibroscan said there is a 30% + or – in fibroscans but from 14 to 27 is nearly an 85 % increase in 6-7 months. Fibrosis is slow progression so I dont really know how to interpret this. The more the inflammation more the kpa rises thus on treatment or EOT is swelling is reduced so does the kpa measurement. Many have reported this but not a doc so dont know.


    Treatment naive
    F 3/4
    Genotype 1 a & b
    V/L 17 MILLION
    Started Harvoni 11th Dec 2015 for 12 weeks
    4 weeks VL UND
    6 WEEKS ALT 32, AST 34
    EOT 03/03 2016 ! UND
    ALT 34, AST 26
    04.04.2016 SVR 4
    26.05.2016 SVR 12
    16.08.2016 SVR 24

    #9300
    Tommy
    • Guardian Angel
    • ★★★★★
    @tommy

    I had a biopsy done twice. I had to ask the doctor both times if the needle was in yet and “when are you going to take a piece of the liver”. He said I already did, I’m done”. I hear some feel pain but it it less then a milli second
    Some have pain afterwards if you can call it that. It is a “uncomfortableness” for a bit in the shoulder area. I had that. It was annoying but very bearable. They call it viscerosmatic pain as it’s felt in the shoulder rather then where you would expect. Basically another area of the body feels the brunt. Even gallbladder pain can be felt in the shoulder.
    I had untrasound guided biopsies done so pretty much no chance of missing. Still the BEST way to go. Not a must though but for piece of mind and seeing if waiting another year or two to save money etc it may be worth it.
    I will post results of my last one 2011 one soon.


    Genotype 1A
    ALT 473
    AST 226
    Virus Load 3,119,030
    Results as of May-2016
    5 week viral load/undetected as of 12/02/2016
    Liver Biopsy Results from Feb 2013
    Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
    Focal Lobular chronic inflammation (Grade 1)
    Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
    Negative Iron stains.

    #9301
    Tommy
    • Guardian Angel
    • ★★★★★
    @tommy

    It takes about 10 years or more to progress a another grade f you don’t drink etc. I wouldn’t take stock in the results. Maybe get another oe if you can every few months or whatever the insurance allows for piece of mind or try it with another doctor. I think resluts may depend on the doctor or technician doing the test. ESPECIALLY in a biopsy.


    Genotype 1A
    ALT 473
    AST 226
    Virus Load 3,119,030
    Results as of May-2016
    5 week viral load/undetected as of 12/02/2016
    Liver Biopsy Results from Feb 2013
    Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
    Focal Lobular chronic inflammation (Grade 1)
    Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
    Negative Iron stains.

    #9323
    Avatar photodarbara
    • Guardian Angel
    • ★★★★★
    @darbara

    Have not drank in 15 years, no drugs. Will get one done in the next 2 weeks again in India :)


    Treatment naive
    F 3/4
    Genotype 1 a & b
    V/L 17 MILLION
    Started Harvoni 11th Dec 2015 for 12 weeks
    4 weeks VL UND
    6 WEEKS ALT 32, AST 34
    EOT 03/03 2016 ! UND
    ALT 34, AST 26
    04.04.2016 SVR 4
    26.05.2016 SVR 12
    16.08.2016 SVR 24

    #9346
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    The point being made by the doctor I mentioned at the bottom of my post was that there was no “best” as all methods carry some risk and all (except the first) have varying levels of accuracy. Your decision needs to be based on how important is it to be totally accurate compared with the risk. The decision process for HCV does not require total accuracy to make decisions. If your fibrosis level is low by any of those methods then short treament should be fine, if it is high then long treatment. If it is close to requiring long treatment or varies wildly from a previous one then either retest, use another method or consider treating for longer.


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #9350
    Avatar photoSirchinenge
    • Guardian Angel
    • ★★★★★
    @sirchinenge

    Drinking is the killer in all this drugs don’t do much if any damage to your liver the shit
    dope is cut with causes other problems.

    Am not sure you’re right about progression I know some people who progressed very quickly in less then
    a few years whilst living a clean life.


    Sob/Dac from Oct 29 2015
    Geno 1b
    Fiberscan 9.9 Pre treatment
    Fiberscan 7.4 week 10
    VL 1.3 million pre treatment
    Week 2.5 VL 96
    Week 5.5 VL 17
    Week 10 VL UD
    SVR 3 UD
    SVR 16 UD
    Cured:
    All liver functions in normal ranges.

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