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itching---this turned into a novel

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  • tammster62
    First of all, to Pamela, I know nothing about the effects of caffeine. All I know is that I need large quantities to survive (sigh). Now my question...I am
    Message 1 of 7 , Nov 6, 2004
      First of all, to Pamela, I know nothing about the effects of
      caffeine. All I know is that I need large quantities to survive
      (sigh).
      Now my question...I am having a problem with itching. Has anyone else
      had this problem? It started with my scalp. It is now on my arm and
      has moved to other areas. The scalp was controllable, but is now
      becoming worse and worse. The arm is, I am assuming, eczema by the
      way it looks. I have been able to control that also, although it
      looks horrible. I am now itching in a very personal area (blush) and
      it is starting to be really, really annoying. Any suggestions?
      Also, my hair seems to be coming out. Not bad. The only way that I
      notice it is in the shower. I am not really concerned. In the grand
      scheme of things, that doesn't bother me at all. I just thought that
      I would mention that.
      Also, I only have 3 more shots and it will be my big "6-month-test".
      I am a 1b. I will find out if it is working or not. I am supposed to
      have the test the week of Thanksgiving so it will probably take at
      least a week for me to get the results. I will have to wait for my
      doc to get back from vacation I am sure.
      Let me complain for just a minute, now that I have said that. I am
      very disappointed in my doc. I was talking to someone else who is
      taking this stuff and they talked about "when they went into the
      clinic once a month, they would also have to talk to a mental health
      specialist". They wanted to know if I did this also. I haven't seen
      or talked to my doc since I started this. Is this unusual? I have
      been having a really easy time so far (except the above complaints),
      but shouldn't he at least want to see me occasionally?
      When I called his office about a flu shot, the nurse told me that he
      said he didn't know and that I should call the Pegasys 800 #. Well,
      what do you think they told me? To ask my doc...they cannot give out
      medical advice. SO, I have a nurse friend who got me a shot (there
      are still miracles) and I am going to take it and see what happens.
      Wish me luck!!
      Is there a training course that I can go through so that I can
      specifically work with hep c patients? I mean that seriously. This is
      ridiculous!
      Oh, well, we must keep our sense of humor intact. The adventure
      continues.
      <><TammieD><>
      ps. To every cloud there is a silver lining. I have lost some weight.
      I tend to be fluffy and I have lost some of that and I am happy LOL.
      God is good!!!!
    • Shshonee (Alley)
      I had a problem with itching the minute I went off the interferon. It lasted a year and a half. The only thing that helped were massive doses of
      Message 2 of 7 , Nov 6, 2004
        I had a problem with itching the minute I went off the interferon. It lasted a year and a half. The only thing that helped were massive doses of antihitimines. I saw an allergist/immunologist. I also took prednisone periodically.

        What they think happened was the interferon turned my immune system inside out, so to speak. My nerves were litereally "shot" and I got liquid filled blisters sometimes and sometimes just big rashes. I was a mess. covered in red. I had to knock myself out to sleep.

        Your doctor will help you with it.

        good luck

        Alley

        [Non-text portions of this message have been removed]
      • Susan Enyart
        Tammie, Try Bag Balm for your itchiness. It is the only thing I could find that seemed to help with the personal area without irritating and making it
        Message 3 of 7 , Nov 7, 2004
          Tammie,
          Try Bag Balm for your itchiness. It is the only thing I could find that seemed to help with the 'personal' area without irritating and making it worse. I just saw Bag Balm yesterday at Wal Mart in the pet supply area. It is also available at fabric stores because quilters and crafters use is on their hands.
          I didn't see my Hep C. doctor very often either when on treatment, but could call his nurse any time I had a question. He did recommend a flu shot while I was on treatment. A mental health specialist was never mentioned. My regular doctor did put me on a low dose of Prozac while on treatment. I don't know if it was really necessary, but he seemed to think it was a good idea, and I didn't have any problem with depression.
          Good luck with your 6 month labs.

          Susan (almost 2 years SVR)



          ----- Original Message -----
          From: tammster62
          To: GIWorld-Hepatitis@yahoogroups.com
          Sent: Saturday, November 06, 2004 10:21 PM
          Subject: [GIWorld-Hepatitis] itching---this turned into a novel



          First of all, to Pamela, I know nothing about the effects of
          caffeine. All I know is that I need large quantities to survive
          (sigh).
          Now my question...I am having a problem with itching. Has anyone else
          had this problem? It started with my scalp. It is now on my arm and
          has moved to other areas. The scalp was controllable, but is now
          becoming worse and worse. The arm is, I am assuming, eczema by the
          way it looks. I have been able to control that also, although it
          looks horrible. I am now itching in a very personal area (blush) and
          it is starting to be really, really annoying. Any suggestions?
          Also, my hair seems to be coming out. Not bad. The only way that I
          notice it is in the shower. I am not really concerned. In the grand
          scheme of things, that doesn't bother me at all. I just thought that
          I would mention that.
          Also, I only have 3 more shots and it will be my big "6-month-test".
          I am a 1b. I will find out if it is working or not. I am supposed to
          have the test the week of Thanksgiving so it will probably take at
          least a week for me to get the results. I will have to wait for my
          doc to get back from vacation I am sure.
          Let me complain for just a minute, now that I have said that. I am
          very disappointed in my doc. I was talking to someone else who is
          taking this stuff and they talked about "when they went into the
          clinic once a month, they would also have to talk to a mental health
          specialist". They wanted to know if I did this also. I haven't seen
          or talked to my doc since I started this. Is this unusual? I have
          been having a really easy time so far (except the above complaints),
          but shouldn't he at least want to see me occasionally?
          When I called his office about a flu shot, the nurse told me that he
          said he didn't know and that I should call the Pegasys 800 #. Well,
          what do you think they told me? To ask my doc...they cannot give out
          medical advice. SO, I have a nurse friend who got me a shot (there
          are still miracles) and I am going to take it and see what happens.
          Wish me luck!!
          Is there a training course that I can go through so that I can
          specifically work with hep c patients? I mean that seriously. This is
          ridiculous!
          Oh, well, we must keep our sense of humor intact. The adventure
          continues.
          <><TammieD><>
          ps. To every cloud there is a silver lining. I have lost some weight.
          I tend to be fluffy and I have lost some of that and I am happy LOL.
          God is good!!!!





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          [Non-text portions of this message have been removed]
        • AVansi7465@aol.com
          In a message dated 11/7/2004 1:22:48 AM Eastern Standard Time, t1d1r1d1@aol.com writes: God is good!!!! All the time. It s just that we re so blind we don t
          Message 4 of 7 , Nov 7, 2004
            In a message dated 11/7/2004 1:22:48 AM Eastern Standard Time,
            t1d1r1d1@... writes:

            God is good!!!!



            All the time. It's just that we're so blind we don't always recognize it.

            Itching(!): I had a real problem with it. There are very good shampoos out
            there that others have suggested. I used Aussie products-still lost hair.Now,
            it's very nearly straight and much thinner than it used to be, but it's on my
            head. For my skin, I used (and still do) Lac-Hydrin 12% and (believe it or
            not) bag balm. The bag balm works well unless things get out of control. It's
            cheaper (buy at local feed and seed) and has no smell or perfume.
            Hope this helps from a practical point of view.
            Anne




            [Non-text portions of this message have been removed]
          • Tatezi
            Wow, Tammie, you are doing really well. Give yourself a pat on the back! Can t help you with the itching, I didn t have that problem. My hair did thin out and
            Message 5 of 7 , Nov 7, 2004
              Wow, Tammie, you are doing really well. Give yourself a pat on the back!

              Can't help you with the itching, I didn't have that problem. My hair did thin out and like you, I only noticed after a shower when there was hair on the tub. I lost my underarm and most of my leg hair during my first round of treatment...and it never grew back. But my head hair seems to have filled out...and my eyebrows are back again.

              As to your doctor, he should be monitoring your blood on a monthly basis. The CBC, platelets and thyroid should be closely monitored. You platelets are your clotting factor and if they get too low, you can have bleeding problems. According to the materials that come with pegasys, if they reach 50,000 you need to go on half doses of the interferon and at 40,000 you need to be pulled from treatment. Low white cells lead to anemia so if you are feeling any breathlessness you could very well be anemic. For that they cut the ribavarinn dose by one pill a day. When I started having low platelets and anemia, they monitored my blood every week. And the thyroid...it is quite common on treatment for your thyriod to go. Fatigue is real common with hypothroidism and if you are like me, you blame it on treatment. Mine was thyroid related and I kept ignoring the fatigue because I blamed it on treatment. That is why you need regular monitoring of your blood.

              Neither time I was on treatment, did I have to see a mental health specialist...I've not heard of that being required. At the start of treatment I went on antidepressents and when the anger started bubbling up, we increased my dosage and that seemed to take care of the problem.

              That's the best I can help you with. I'm so glad you are handling this so well....and again, pat yourself on the back!

              Tatezi

              [Non-text portions of this message have been removed]
            • tammster62
              Thanks for the advice. I will look for the bag balm and the other stuff mentioned. The hair loss doesn t really bother me because I know that should grow
              Message 6 of 7 , Nov 7, 2004
                Thanks for the advice. I will look for the bag balm and the other
                stuff mentioned. The hair loss doesn't really bother me because I
                know that should grow back...it is the itching that drives me crazy.
                As for the blood tests, I go at least every 3 weeks to be tested. I
                have low white and red counts. I have been taking Epogen for the red
                count since about 2 weeks into the treatments and I take the Neupogen
                when the white counts go too low. I was on it for 6 weeks last time
                and have been on it for 4 weeks this time. I don't like that one. It
                makes me hurt pretty bad. BUT, I can keep going so that is what
                counts.
                And yes, I know that I am very, very blessed. I have not had any
                sides that I could not handle. I hurt pretty bad some times but it
                passes. I itch and it drives me crazy, but I can get some relief from
                that. There are some others but once again, they are completely
                manageable.
                One of the things that I was really worried about was the anger, and
                so far that really hasn't surfaced. I tend to be have a little worse
                pms problems, but it doesn't last long and I try to be very aware of
                it.
                All in all, I have had an easy time of it and am thankful.
                Keep you chin up. It doesn't change the situation if you are laughing
                or crying...laughing just makes you feel better :)
                <><TammieD><>
              • Shshonee (Alley)
                I used that lac hydrin lotion on my skin, didn t do a thing. Used oatmeal baths, oils, you name it, I used it. A lot depends on what is causing the itching as
                Message 7 of 7 , Nov 7, 2004
                  I used that lac hydrin lotion on my skin, didn't do a thing. Used oatmeal baths, oils, you name it, I used it. A lot depends on what is causing the itching as to what will help it.

                  If over the counter doesn't help, see a doc.

                  Alley

                  [Non-text portions of this message have been removed]
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