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  • RLWINNE@cs.com
    Hey Group - hope everyone is doing as well as they can. As you all probably know we were going to the doctor hoping my husband was going to get off of the
    Message 1 of 7 , Feb 12, 2001
      Hey Group - hope everyone is doing as well as they can. As you all probably
      know we were going to the doctor hoping my husband was going to get off of
      the Rebetron Combo today after 18 months on it. We got good news and bad
      news. It seems my husband 's PCT (Porphyria) is returning and the doctor is
      pretty frustrated about that also. The doctor wants him to stay on the combo
      3 more weeks and then if the Pegasys is available by then which he is hoping
      start him on it without the Ribavarin with it. I know the Schering Brand is
      the only one that is available so far am I right? He says his liver is much
      better and that he is in remission and has been for a long time. The Pegasys
      will be a maintenance for the Porphyria the doctor says. Now I know that
      reading about the Porphyria that they use Interferon to treat it. What the
      doctor said is that he has run his course on the Ribavarin which I have never
      heard before. We also have to go back to the Dermatologist that found the
      Porphyria and Hep C to see about a couple of moles my husband has that could
      be skin cancer. It seems to me that we should be able to find a study some
      where involving Porphyria that is caused by the Hep C. Our doctor says he
      only knows of one other case of this combination of diseases in his practice.
      We are trying to look at the bright side of it that it will be only one
      shot a week with less side effects hopefully and he will be off the Ribavarin
      that makes him so sick and that at least his liver is better and in
      remission. We were hoping we would never have to deal with the Porphyria
      since it seemed to be in remission also the past 7 months and if we did it
      would be after he came off the Combo so I guess we are at that time now. We
      are wondering if we should wait for the Roche brand of the Pegasays or go
      with the Schering. We never want his skin to get in the shape it was before.
      Has anyone else heard that you can run the course of Ribavarin before like
      our doctor stated? I think I will be very busy trying to find out if any
      hospitals ect are doing any studies with the combination of the two diseases
      together - lets face it my husband is an experiment and I think we need more
      help on understanding the two together. If you could check in your area for
      us we would appreciate it. Maybe since only 5% of the people with Hep C have
      the Porphyria from it and that is why there is not much interest in it yet.
      This means he is still allergic to the sun also. They usually use
      Phlebotomies to treat the PCT but I have read several places that that does
      not work for people with Hep C. Life goes on and we will stay positive that
      they find an answer for everyone out there soon. Hope this finds you well
      and hanging in there as we are. Has anyone heard from Alley lately? She has
      been on my mind. Thanks ahead of time - your all in our prayers.

      Winne
    • claudine intexas
      Hello Winnie, I m really sorry to hear that the PCT seems to be coming back. I don t know of any studies on it, but there might be other doctors with more
      Message 2 of 7 , Feb 13, 2001
        Hello Winnie,
        I'm really sorry to hear that the PCT seems to be
        coming back. I don't know of any studies on it, but
        there might be other doctors with more experience than
        yours in dealing with it if this is only the second
        time he has dealt with it. I know that PCT is one of
        the diseases that has been proved to be caused by the
        HCV so it stands to reason someone somewhere has some
        experience with it. I'm sure the reason he wants to
        stop the ribavirin is because there have not been any
        studies on using it long term, so long term side
        effects and risks are not known. I have seen it
        stated that it shouldn't be used for longer than one
        year, and your hubby is already past that point.
        Besides, I don't think the ribavirin is going to help
        with the PCT any. As for the pegylated interferon
        question, why not go ahead and switch to the
        Peg-Intron as soon as it becomes available. Then if
        you feel you need to you could still switch to the
        Roche brand, Pegasys, when it is available. Well,
        good luck today at the doctor. Be sure and let us
        know what happens!
        Claudine

        >


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      • RLWINNE@cs.com
        Claudine Thank you so much I knew I could count on the group to help us get through this once again. We feel like you about the Ribavarin pills and not really
        Message 3 of 7 , Feb 13, 2001
          Claudine

          Thank you so much I knew I could count on the group to help us get through
          this once again. We feel like you about the Ribavarin pills and not really
          helping the PCT. We do not see the Dermatologist until March 13th about the
          moles that the GI doctor is worried about and then we can question him again
          about the PCT hoping he can help us in that area again since he was the one
          who Diagnosed it to begin with and sent us to the GI for the treatment for
          the liver. My husband is really down right now but I will not let him give
          up. Thanks for your input and support. We all need each other so much.
          Thanks again.

          Winne
        • caban cirene
          YES the moles are a concern, but I have tons and tons of them (from combo, from infergen, from PEG). Had lots of them removed, all biopsy(s) came back
          Message 4 of 7 , Feb 15, 2001
            YES the moles are a concern, but I have tons and tons
            of them (from combo, from infergen, from PEG). Had
            lots of them removed, all biopsy(s) came back
            negative. Just a price you pay for the drugs.

            --- RLWINNE@... wrote:
            > Claudine
            >
            > Thank you so much I knew I could count on the group
            > to help us get through
            > this once again. We feel like you about the
            > Ribavarin pills and not really
            > helping the PCT. We do not see the Dermatologist
            > until March 13th about the
            > moles that the GI doctor is worried about and then
            > we can question him again
            > about the PCT hoping he can help us in that area
            > again since he was the one
            > who Diagnosed it to begin with and sent us to the GI
            > for the treatment for
            > the liver. My husband is really down right now but
            > I will not let him give
            > up. Thanks for your input and support. We all need
            > each other so much.
            > Thanks again.
            >
            > Winne
            >


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          • RLWINNE@cs.com
            Cirene Thank you for sharing this information with us. It is a big worry of course for my husband but am trying to keep that in mind that they could be
            Message 5 of 7 , Feb 16, 2001
              Cirene

              Thank you for sharing this information with us. It is a big worry of course
              for my husband but am trying to keep that in mind that they could be negative
              and will be. You know how stress is on this combo treatment and after
              sharing your email with him he is feeling better about it now to. We will
              find out on March 13th. Thanks again we know there are many things that the
              Combo causes but at least we know his liver is better and that is the chance
              you take when you go on it - we just pray that he stays in remission. Thanks
              again!!!!

              Winne
            • caban cirene
              Hi Winnie More mole stuff...got almost 40 large moles taken off...NONE were cancer...but have at least 100 + more...really big ones...my husband says they are
              Message 6 of 7 , Feb 16, 2001
                Hi Winnie
                More mole stuff...got almost 40 large moles taken
                off...NONE were cancer...but have at least 100 +
                more...really big ones...my husband says they are the
                size of Kansas...must wait till my blood work is UP...
                before getting more of them off...the stress is harder
                on the liver...than the ugly moles...take care, cirene
                --- RLWINNE@... wrote:
                > Cirene
                >
                > Thank you for sharing this information with us. It
                > is a big worry of course
                > for my husband but am trying to keep that in mind
                > that they could be negative
                > and will be. You know how stress is on this combo
                > treatment and after
                > sharing your email with him he is feeling better
                > about it now to. We will
                > find out on March 13th. Thanks again we know there
                > are many things that the
                > Combo causes but at least we know his liver is
                > better and that is the chance
                > you take when you go on it - we just pray that he
                > stays in remission. Thanks
                > again!!!!
                >
                > Winne
                >


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              • AVansi7465@aol.com
                ... Dear Winne, I checked with the local GI physicians and the Dermatologists. It took me awhile to get a response from everyone, but the general opinion is:
                Message 7 of 7 , Mar 1, 2001
                  In a message dated 2/13/01 6:20:10 PM !!!First Boot!!!, RLWINNE@... writes:


                  > Thank you so much I knew I could count on the group to help us get through
                  > this once again. We feel like you about the Ribavarin pills and not really
                  > helping the PCT. We do not see the Dermatologist until March 13th about
                  > the
                  > moles that the GI doctor is worried about and then we can question him
                  > again
                  > about the PCT hoping he can help us in that area again since he was the one
                  > who Diagnosed it to begin with and sent us to the GI for the treatment for
                  > the liver. My husband is really down right now but I will not let him give
                  > up. Thanks for your input and support. We all need each other so much.
                  > Thanks again.
                  >
                  >

                  Dear Winne, I checked with the local GI physicians and the Dermatologists.
                  It took me awhile to get a response from everyone, but the general opinion
                  is: No more ribavirin. The long term effects are nasty in those few cases
                  where folks have had the stamina to hold out as long as your husband has.
                  The dermatologists are still scratching their heads over the abundance of
                  side effects from HCV,not to mention the treatment. I don't think they were
                  expecting this. Take care, Anne


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