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Re: [GIWorld-Hepatitis] Is there a right time to treat hepC?

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  • jtwagers7@aol.com
    Hi Micky. Yes -- there is some truth in that, and those are some of the things that a good GI doctor or his nurse will take the time to discuss with that
    Message 1 of 8 , Jun 26, 2004
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      Hi Micky. Yes -- there is some truth in that, and those are some of the
      things that a good GI doctor or his nurse will take the time to discuss with that
      individual patient. Everything about that person's existing health,
      including the conditon of their liver and any known health problems should be taken
      into consideration when making the decision.

      As far as your question about LFT's and when a person should start -- if
      someone has HCV yet has no evidence of liver damage, treatment with Peg / Rib is
      not indicated (at least I've never heard advising treatment in someone who has
      no evidence of liver damage or who has very, very minimal damage). LFT's
      (AST/ALT, also known as sgpt/sgot) can be totally within normal limits with
      liver damage occurring at the same time. So -- normal LFT's (or slightly
      elevated enzymes) don't mean that no liver damage has occurred.

      I had totally normal labs and LFTs for years as liver disease was occurring.
      When I was diagnosed last year and biopsied, I was sitting at Grade 3 / Stage
      2 (quite a bit of inflammation and some fibrosis). My GI doc said I was
      on the border as far as "treat / don't treat", and he said the degree of
      inflammation (grade 3) concerned him more than the Stage 2 and that he would
      probably lean more towards treatment for this reason (due to the grade 3
      inflammation) than opting to not treat or to wait for something "new and improved".

      Taken into consideration was also my geno type (1a), my other noted health
      problems (depression, anxiety, recovering drug addict/ alcoholic, on betablocker
      for tachycardia, i.e. fast heart rate, due to valvular disease), my support
      system, my gender and age (female / 44). With everything considered, I was
      deemed a candidate for the combo treatment (PegIntron and Rebetol or Pegasys
      and Copegus) and would be followed with labs and by psych and cardiac.

      I was very symptomatic when diagnosed, and so it didn't take me long to make
      a decision -- I wanted to be rid of the virus and felt I had no alternative
      but to attempt the treatment and to begin it "immediately" (or as soon as
      possible). With research indicating I had a 50% change of responding favorably, I
      made the decision TO treat, knowing that it could possibly backfire and
      create more health problems for me (temporary and/or permanent) and knowing it
      could possibly kill me from complications no one could predict or plan for. I
      did not do well and had to pulled within three weeks due to rapidly dropping
      wbcs, rbcs, and platelets and overwhelming peridontal infection that "kicked
      in" when I began treatment. That (the infection) had to be taken care of but
      couldn't while I was on treatment. So, they pulled me to get that straightened
      out. It's fixed, and I'm still a candidate and can begin treatment again if
      I want to. Now, though (if I decide to attempt it again), I will have
      another health problem that will have to be monitored closely while on treatment
      -- periodontal disease and risk of infection.

      It's a tough decision. It's tough deciding when to treat, and it's tough
      deciding when not to treat. Only the person who is deemed a candidate for
      treatment can decide :"when the right time is". I think they need to be
      well-informed about the risks of treatment and make that decision in consultation with
      their GI doc.

      Best of luck!

      Julie


      In a message dated 6/26/2004 9:01:54 AM Eastern Standard Time,
      micky@... writes:


      > Hello,
      >
      > Hope this finds you well. I have a question that keeps coming up in my
      > group: Is there a "right time" to start tx?
      > If a person is diagnosed wth hep C, but does not have any liver damage and
      > LF are normal or near to normal, should this person start tx immediately to
      > avoid developing the disease?
      > I've been told that if you start tx before any liver damage is present, you
      > might trigger the action of the virus and that one should think about tx only
      > when inflamation is present or fibroses is at level 2.
      > is there any truth in that?
      > thanks
      > Micky
      >
      >



      [Non-text portions of this message have been removed]
    • Tatezi
      If one doesn t have any liver damage, there isn t any reason to rush into treatment. Has a biopsy been done to determine there isn t any liver disease?
      Message 2 of 8 , Jun 26, 2004
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        If one doesn't have any liver damage, there isn't any reason to rush into treatment. Has a biopsy been done to determine there isn't any liver disease? Treatment is hard on our bodies and shouldn't be jumped into lightly. But HCV has it's own effect on our bodies separate from liver damage. Remember, it isn't a liver disease but a systemic virus. So the viral load is an important consideration.

        LFTs are not a contributing factor...I am a genotype 1b, stage 2, phase 2 and have never had abnormal LFTs. Research has proven that LFTs don't determine the amount of liver disease...or the viral load.

        As far as "developing the disease," if you have hep c, you have hep c...has an RNA been done to determine the viral load? That is information (along with a biopsy) you need to help in the treatment decision process.

        Never heard that treatment "triggers the action of the virus." The virus replicates itself... iron and cortisone result in an increased viral load and need to be avoided...

        I've done treatment twice...did Rebetron back in 2001 and didn't respond. Did Pegasys and at the 3 month marker was undetectable. Completed my 48 weeks of treatment last night but won't know if I'm a sustained responder for 6 months.

        Tatezi

        Is there a "right time" to start tx? If a person is diagnosed wth hep C, but does not have any liver damage and LF are normal or near to normal, should this person start tx immediately to avoid developing the disease?
        I've been told that if you start tx before any liver damage is present, you might trigger the action of the virus and that one should think about tx only when inflamation is present or fibroses is at level 2.
        is there any truth in that?
        thanks
        Micky

        [Non-text portions of this message have been removed]
      • jtwagers7@aol.com
        Hi Micky. The triggering you have heard about might be related to this side effect of treatment (below). This side effect, although it s states it s
        Message 3 of 8 , Jun 27, 2004
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          Hi Micky. The "triggering" you have heard about might be related to this
          side effect of treatment (below). This side effect, although it's states it's
          "unique and rare", can apparently occur. My doc did mention (when talking to
          me about the risks of treattment) that "the disease can be made worse with
          treatment". He may have been talking about this phenomenon (I'm not sure),
          but I considered his telling me "it can be made worse" having been warned. If
          I had been Grade 2 / Stage 2 on biopsy, I probably would have opted not to
          treat, but since the inflammation was grade 3 and a concern to the doc, I
          attempted it.

          Hope this helps some.

          Julie



          http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/index.htm

          "A unique but rare side effect is paradoxical worsening of the disease. This
          is assumed to be caused by induction of autoimmune hepatitis, but its cause is
          really unknown. Because of this possibility, aminotransferases should be
          monitored. If ALT levels rise to greater than twice the baseline values, therapy
          should be stopped and the patient monitored. Some patients with this
          complication have required corticosteroid therapy to control the hepatitis".


          In a message dated 6/26/2004 9:01:54 AM Eastern Standard Time,
          micky@... writes:


          > I've been told that if you start tx before any liver damage is present, you
          > might trigger the action of the virus and that one should think about tx
          > only when inflamation is present or fibroses is at level 2.
          > is there any truth in that?
          > thanks
          > Micky
          >



          [Non-text portions of this message have been removed]
        • micky
          Thanks Julie. That s exactly what I thought. I just lost a good friend, last night due to liver failure caused by cirrhosis and auto immune hepatitis. I did tx
          Message 4 of 8 , Jun 27, 2004
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            Thanks Julie. That's exactly what I thought.
            I just lost a good friend, last night due to liver failure caused by
            cirrhosis and auto immune hepatitis.
            I did tx and finished in Feb 03 and I am undetectable - geno 1A,
            fibrosis grade 2 peri portal inflamation grade 3.

            He could have been transplanted hadn't it be for his doctor. We all
            advised him to change, to get another opinion and when the second
            opinion told him to stop tx because it causing more damage than good,
            he didn't want to listen and what happened is exactly that: pegasys
            accelerated the process.
            I am very upset because it could have been avoided had he had a
            transplant some months ago.

            May his soul rest in peace.

            hugs
            Micky in Brazil

            >
            >
          • jtwagers7@aol.com
            Oh gosh, Micky -- I am so, so sorry about your friend :( . That s just awful, and I send my deepest condolences. That possible risk of treatment is what
            Message 5 of 8 , Jun 27, 2004
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              Oh gosh, Micky -- I am so, so sorry about your friend :( . That's just
              awful, and I send my deepest condolences. That possible risk of treatment is
              what scared me the most about attempting treatment. I'm so sorry this hit
              home with you and happened to your friend. Words can't express it. May he rest
              peacefully now, and may you find some peace from this tragedy in time.

              There's another star shining in the sky tonight that will always be there.
              My heart goes out. Hang in there.

              Julie

              In a message dated 6/27/2004 8:22:21 AM Eastern Standard Time,
              micky@... writes:


              > Thanks Julie. That's exactly what I thought.
              > I just lost a good friend, last night due to liver failure caused by
              > cirrhosis and auto immune hepatitis.
              > I did tx and finished in Feb 03 and I am undetectable - geno 1A,
              > fibrosis grade 2 peri portal inflamation grade 3.
              >
              > He could have been transplanted hadn't it be for his doctor. We all
              > advised him to change, to get another opinion and when the second
              > opinion told him to stop tx because it causing more damage than good,
              > he didn't want to listen and what happened is exactly that: pegasys
              > accelerated the process.
              > I am very upset because it could have been avoided had he had a
              > transplant some months ago.
              >
              > May his soul rest in peace.
              >
              > hugs
              > Micky in Brazil
              >
              >



              [Non-text portions of this message have been removed]
            • claudine intexas
              ... In this case, the accellerated damage to his liver would NOT be due to the treatment triggering the hep C virus into causing more damage, it is due to his
              Message 6 of 8 , Jun 27, 2004
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                > In a message dated 6/27/2004 8:22:21 AM Eastern Standard Time,
                > micky@... writes:
                >
                > > Thanks Julie. That's exactly what I thought.
                > > I just lost a good friend, last night due to liver failure caused
                > by
                > > cirrhosis and auto immune hepatitis.
                > > I did tx and finished in Feb 03 and I am undetectable - geno 1A,
                > > fibrosis grade 2 peri portal inflamation grade 3.
                > > He could have been transplanted hadn't it be for his doctor. We
                > all
                > > advised him to change, to get another opinion and when the second
                >
                > > opinion told him to stop tx because it causing more damage than
                > good,
                > > he didn't want to listen and what happened is exactly that:
                > pegasys
                > > accelerated the process.
                > > I am very upset because it could have been avoided had he had a
                > > transplant some months ago.
                > >
                > > May his soul rest in peace.
                > >
                > > hugs
                > > Micky in Brazil

                In this case, the accellerated damage to his liver would NOT be due
                to the treatment triggering the hep C virus into causing more damage,
                it is due to his having autoimmune hepatitis. Autoimmune hepatitis is
                when your own immune system recognizes the liver as some foreign so
                the immune system is attacking and damaging the liver. Since
                interferon inhances your immune system it can strengthens that
                autoimmune response. In his case it was not the virus which did the
                damage, but his immune system, and it sounds like the interferon made
                that worse. Too bad he did not listen to the advice from the second
                doctor.
                C
              • land
                HI.I agree with Claudine.Treatment saved and prolonged many lives.If all the people who had treatment and are cured or feeling a lot better send a email to
                Message 7 of 8 , Jun 28, 2004
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                  HI.I agree with Claudine.Treatment saved and prolonged many lives.If all the people who had treatment and are cured or feeling a lot better send a email to this group Yahoo will stop serving them because of overloading the server.Willem.
                  ----- Original Message -----
                  From: claudine intexas
                  To: GIWorld-Hepatitis@yahoogroups.com
                  Sent: Monday, June 28, 2004 4:47 AM
                  Subject: Re: [GIWorld-Hepatitis] Re: Is there a right time to treat hepC?/Julie



                  > In a message dated 6/27/2004 8:22:21 AM Eastern Standard Time,
                  > micky@... writes:
                  >
                  > > Thanks Julie. That's exactly what I thought.
                  > > I just lost a good friend, last night due to liver failure caused
                  > by
                  > > cirrhosis and auto immune hepatitis.
                  > > I did tx and finished in Feb 03 and I am undetectable - geno 1A,
                  > > fibrosis grade 2 peri portal inflamation grade 3.
                  > > He could have been transplanted hadn't it be for his doctor. We
                  > all
                  > > advised him to change, to get another opinion and when the second
                  >
                  > > opinion told him to stop tx because it causing more damage than
                  > good,
                  > > he didn't want to listen and what happened is exactly that:
                  > pegasys
                  > > accelerated the process.
                  > > I am very upset because it could have been avoided had he had a
                  > > transplant some months ago.
                  > >
                  > > May his soul rest in peace.
                  > >
                  > > hugs
                  > > Micky in Brazil

                  In this case, the accellerated damage to his liver would NOT be due
                  to the treatment triggering the hep C virus into causing more damage,
                  it is due to his having autoimmune hepatitis. Autoimmune hepatitis is
                  when your own immune system recognizes the liver as some foreign so
                  the immune system is attacking and damaging the liver. Since
                  interferon inhances your immune system it can strengthens that
                  autoimmune response. In his case it was not the virus which did the
                  damage, but his immune system, and it sounds like the interferon made
                  that worse. Too bad he did not listen to the advice from the second
                  doctor.
                  C


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