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Re: [GIWorld-Hepatitis] Question re Stroke & Rebetron

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  • claudine intexas
    Tatezi, The anemia that is caused by the Rebetron (the ribavirin part of it) will not respond to eating meat. You don t have IRON DEFICIENCY anemia, you have
    Message 1 of 25 , Feb 28, 2001
      Tatezi,
      The anemia that is caused by the Rebetron (the
      ribavirin part of it) will not respond to eating meat.
      You don't have IRON DEFICIENCY anemia, you have
      hemolytic anemia. All the meat in the world, or all
      the iron supplements, won't help at all, and in fact,
      the high iron content provides a great environment for
      the virus to multiply in. Not to mention it's hard on
      your liver. The ribavirin causes the destruction of
      red blood cells. The ONLY solution to this problem is
      a reduction in the amount of ribavirin. However,
      since your regular doctor doesn't seem to be familiar
      with the anemia caused by the ribavirin he may also
      not know how low the hemoglobin can drop to before
      your dose should be reduced, or how low it can drop
      before the ribavirin should be discontinued. This is
      one reason why specialists need to be determining your
      treatment and following you. Your regular doctor may
      be doing your blood work but your GI needs to be
      reading them and interpreting them for you. As for
      the low platelets, the interferon causes them to drop,
      but you'd be surprised how low they can go before it
      becomes a major concern. On your stroke question,
      people with heart conditions should not take ribavirin
      in most cases. But in people who don't have heart
      problems this is a very uncommon side effect. You can
      read about all these things in the prescribing
      information that lists all side effects, warnings, and
      dosing instructions (including when doses should be
      reduced) at http://www.rxlist.com Type in Inton-A in
      the search box, then scroll down to where you see
      (highlighted) Intron-A/Rebetron (I think, if I'm
      remembering right! I know if you type in Rebetron you
      only get the patient info, not the prescribing info).
      It sounds like your viral load has dropped quite a
      bit, have you thought about doing DAILY dosing of the
      interferon? If you do get to undetectable you really
      might want to talk to your doctor about staying on the
      treatment for a longer time. (Not fun to think about,
      I know.) There has been some indication that the
      length of treatment should be determined by WHEN you
      go undetectable. It makes sense if you think about
      it. Someone who doesn't go undetectable until week 40
      obviously has a more resistant strain of virus than
      someone who is undetectable by week 4.
      Good luck!
      Claudine
      >


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    • Tatezi
      Thanks, Claudine.... My doctor does fax the labs to the liver guy and it was the liver guy that alerted me there was something going on with my blood because
      Message 2 of 25 , Mar 1, 2001
        Thanks, Claudine....

        My doctor does fax the labs to the liver guy and it was the liver guy
        that alerted me there was something going on with my blood because he
        asked me to get another test done in 2 weeks instead of 4 weeks. The
        liver guy seemed unconcerned other than wanting to keep a closer watch
        on the counts. But he didn't explain why...I like all the information
        not just some of it. Which is why I called my regular doc.

        And you are right, my regular doc has very little knowledge of our
        treatment or disease and I am aware of that. That is why I depend so
        much on everyone here...and as always you folks have come through for
        me.

        I didn't know that the ribavirin was what caused the anemia. I'm glad to
        know that. Is it also the ribavirin that causes the thyroid issue, the
        crankiness and the memory loss?

        And thanks for suggesting going to just the interferon for maintenance.
        I hadn't even thought about that even though I've read articles about
        it....course any more nothing stays in my memory. I don't mind staying
        on the treatment....I know how sick many of you are but in comparison
        I've really had it pretty darn easy. I'm cranky, my thyroid is blown,
        I'm tired...but I'm not sick like so many of you describe.

        And I'm so relieved to know that eating the flesh of animals won't make
        a difference. I knew not to take iron supplements but was really a tad
        distressed about having to eat meat.

        Everyone here is so wonderful....how fortunate that we all have each
        other to reach out to.

        Gotta get ready for work....today is my day for volunteering with
        battered wimmins shelter children while moms are working so I need to be
        on time to the office since I'm only there half a day today.

        Thank you everyone......<<<hugs>>>>
        Mitakuye oyasin
        Tatezi

        claudine intexas wrote:

        > Tatezi,
        > The anemia that is caused by the Rebetron (the
        > ribavirin part of it) will not respond to eating meat.
        > You don't have IRON DEFICIENCY anemia, you have
        > hemolytic anemia. All the meat in the world, or all
        > the iron supplements, won't help at all, and in fact,
        > the high iron content provides a great environment for
        > the virus to multiply in. Not to mention it's hard on
        > your liver. The ribavirin causes the destruction of
        > red blood cells. The ONLY solution to this problem is
        > a reduction in the amount of ribavirin. However,
        > since your regular doctor doesn't seem to be familiar
        > with the anemia caused by the ribavirin he may also
        > not know how low the hemoglobin can drop to before
        > your dose should be reduced, or how low it can drop
        > before the ribavirin should be discontinued. This is
        > one reason why specialists need to be determining your
        > treatment and following you. Your regular doctor may
        > be doing your blood work but your GI needs to be
        > reading them and interpreting them for you. As for
        > the low platelets, the interferon causes them to drop,
        > but you'd be surprised how low they can go before it
        > becomes a major concern. On your stroke question,
        > people with heart conditions should not take ribavirin
        > in most cases. But in people who don't have heart
        > problems this is a very uncommon side effect. You can
        > read about all these things in the prescribing
        > information that lists all side effects, warnings, and
        > dosing instructions (including when doses should be
        > reduced) at http://www.rxlist.com Type in Inton-A in
        > the search box, then scroll down to where you see
        > (highlighted) Intron-A/Rebetron (I think, if I'm
        > remembering right! I know if you type in Rebetron you
        > only get the patient info, not the prescribing info).
        > It sounds like your viral load has dropped quite a
        > bit, have you thought about doing DAILY dosing of the
        > interferon? If you do get to undetectable you really
        > might want to talk to your doctor about staying on the
        > treatment for a longer time. (Not fun to think about,
        > I know.) There has been some indication that the
        > length of treatment should be determined by WHEN you
        > go undetectable. It makes sense if you think about
        > it. Someone who doesn't go undetectable until week 40
        > obviously has a more resistant strain of virus than
        > someone who is undetectable by week 4.
        > Good luck!
        > Claudine
        > >
        >
        >
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      • AVansi7465@aol.com
        ... Hi! You, obviously, haven t heard of what we call Interferon Fog . Yes, it does cause memory loss, crackiness and I am, for the first time in my life,
        Message 3 of 25 , Mar 1, 2001
          In a message dated 3/1/01 1:09:17 PM !!!First Boot!!!, tatezi@... writes:


          > I didn't know that the ribavirin was what caused the anemia. I'm glad to
          > know that. Is it also the ribavirin that causes the thyroid issue, the
          > crankiness and the memory loss?
          >

          Hi! You, obviously, haven't heard of what we call "Interferon Fog". Yes, it
          does cause memory loss, crackiness and I am, for the first time in my life,
          hypothyrodic. I spent the first 35 years of my life on diets trying to lose
          weight. Guess I spend the rest of it trying to gain weight. Anemia is the
          most common reason the docs take people off of Rebetron. It is the reason my
          doc took me off. When my RBC hit the cellar, we both said: " Enough,
          already." That count made me inelligable for any trials on the new drugs. I
          finally made it to 4.0, but that still isn't within normal values.
          For all you people who are fighting with your disability companies.......I
          finally won.....without a lawyer. Advise: Go see a psychologist for a
          couple of sessions and explain what this disease is like. Then have him/her
          write a letter. I started seeing mine two weeks before I started with the
          first round of treatment, which was Interferon, alone. She has been seeing
          me off an on now , for three years. The Navy demands that you see, either a
          psychiatrist or a psychologist if you have a terminal illness or are
          undergoing chemo. Speak with your primary care physician. None of them
          wants to be responsible for a suicide. Good luck and good. Anne


          [Non-text portions of this message have been removed]
        • claudine intexas
          Hi Tatizi, It is the interferon that causes the thyroid problems and crankiness, but it could be both the interferon and your thyroid problem causing the
          Message 4 of 25 , Mar 1, 2001
            Hi Tatizi,
            It is the interferon that causes the thyroid
            problems and crankiness, but it could be both the
            interferon and your thyroid problem causing the memory
            problem. I was told by one of the Be-In-Charge nurses
            that both interferon and ribavirin can cause
            depression and that depression is more of a problem in
            those on combo, as opposed to mono therapy, but I
            really haven't seen any info confirming that. As for
            interferon alone as maintainence, that really wasn't
            what I was saying. I think you should keep doing the
            ribavirin as long as possible (well, at least a year -
            I don't think it's been tested for safety when taken
            longer than that) even if you need a reduced dose,
            since it improves your chances of sustaining a
            response. However, interferon used alone is being
            studied now as a maintainence therapy for
            nonresponders to help keep fibrosis or cirrhosis from
            getting worse, and maybe even improving the condition
            of the liver. Good luck!
            Claudine


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          • Alley/Pat
            Tatezi, Claudine is right. This isn t the same kind of anemia. Sorry thot you knew that but I get confused lol. Try upping some vitamins too, esp the B
            Message 5 of 25 , Mar 1, 2001
              Tatezi,
              Claudine is right. This isn't the same kind of anemia. Sorry thot you
              knew that but I get confused lol. Try upping some vitamins too, esp the B
              vitamins, folic acid, if you can take those. I don't remember the state of
              your liver so I don't want to give wrong suggestions for you k.


              Patricia / Alley
              alleypat@...
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            • Alley/Pat
              tatezi said
              Message 6 of 25 , Mar 1, 2001
                tatezi said <<I didn't know that the ribavirin was what caused the anemia.
                I'm glad to
                know that. Is it also the ribavirin that causes the thyroid issue, the
                crankiness and the memory loss?>>

                I forgot, what anti depressant are you on? I found a good anti d helped me a
                lot with the irritabileness and I slept better. My doc adjusts the anti d
                dosage depending on my reaction to the combo. About the 4th month I had to
                increase a while. Now I'm back down to the original dose.


                Patricia / Alley
                alleypat@...
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              • Tatezi
                Been taking prozac and haven t had any problems with depression.....just every now and then get overwhelmed with crankiness. The liver guy gave me xanax and it
                Message 7 of 25 , Mar 3, 2001
                  Been taking prozac and haven't had any problems with depression.....just
                  every now and then get overwhelmed with crankiness. The liver guy gave
                  me xanax and it has helped considerably with the crankiness so maybe
                  it's anxiety related. Don't know how that can be, but my body and mind
                  seem to be strangers to me any more.

                  Don't really want to switch antidepressants if at all possible. My
                  doctor prescribes a double dose for me which keeps me and my mother
                  supplied. Since my dad's death, prozac turned my mom's life around. But
                  with medicare not covering it and at $200 a month for the prescription,
                  she really can't afford it.

                  And sleeping....I started having a problem sleeping even before starting
                  tx. Blamed it on my bed being old and bought a new bed. Blamed it on my
                  cats....seemed I couldn't stand to have them in bed with me any more.
                  Finally it reached the point where I wasn't sleeping at all (like for 3
                  weeks)....just kept getting up and walking around the house. Also had a
                  problem holding my legs still.....couldn't sit and watch tv or read or
                  anything. I don't know if this is related to the hep or tx or not, but I
                  was diagnosed with restless leg syndrome. Since then they've had me
                  taking Klonpin at night and once again sleep is not a problem. Since
                  this was starting before I started treatment I doubt it is treatment
                  related but maybe tx exacerbated it? I have no clue, just glad to be
                  sleeping again.

                  The worst thing is the blasted brain fog. I can't remember anything any
                  more. And I'm so spacey all the time....can't concentrate on anything.
                  Watch TV and 5 minutes later can't remember what I watched. Can't focus
                  on reading....can't concentrate. Can't wait for this to end...sure hope
                  it does end.

                  >
                  > I forgot, what anti depressant are you on? I found a good anti d
                  > helped me a lot with the irritabileness and I slept better.
                  >
                  >
                  > Patricia / Alley
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                • jessiefromchino@webtv.net
                  Hi All, Well I have been off tx for 2 months know. I feel great not much brain fog any more I still forget sometimes what I am talking about. But I can watch
                  Message 8 of 25 , Mar 3, 2001
                    Hi All,
                    Well I have been off tx for 2 months know. I feel great not much
                    brain fog any more I still forget sometimes what I am talking about. But
                    I can watch tv and remember what I am watching. Oh I remember what
                    people tell me that is so nice. My sinuses are back to normal YEA!!
                    I still have joint and muscles pain but I can live with it not like it
                    was on tx. My skin is not dry or itchy any more. No more red spots on my
                    chest. One thing I have noticed when I am tired I have got to lay down I
                    have no choice I get just beat. I think this whole thing has taught me
                    to slow down I use to be a go, go and go some more person. (not any
                    more) I am know a slow go person.
                    I go for a 3 month blood test at the end of March. Just wanted to let
                    you all know what was going on with me. I still read my e-mail every
                    day.
                    Take Care, Jessie







                    E-Z DOES IT
                  • Suzy Balone
                    Jessie and ALL, All right , two months off treatment , I myself have finished tx as of yesterday, so am still waiting to feel good, hopefully I will! Does
                    Message 9 of 25 , Mar 3, 2001
                      Jessie and ALL,
                      All right , two months off treatment , I myself have finished tx as of
                      yesterday, so am still waiting to feel good, hopefully I will!
                      Does anyone know how long it might take for your eyes to return to
                      their previous state? Was wondering how long I should go after tx to get
                      an eye exam. I am so excited and wasn to thank each and everyone of you for
                      the support, prayers, and generosity of your time and knowledge shared on
                      this site as well as other sites.
                      Brain fog was getting pretty bad at the end, hopefully that will clear also.
                      If my sinuses would clear, it would be great!! I will go in Monday for my
                      final blood work, to see if I am still undectable, then will let you all
                      know

                      THANK YOU ALL FROM THE BOTTOM OF MY HEART : )

                      Suzy
                      PS
                      Good luck on your three month test Jessie


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                    • Alley/Pat
                      Jesse way to go! Glad things are easing up for you some. Keep us informed on your tests :) You give us hope Patricia / Alley alleypat@flash.net ... My
                      Message 10 of 25 , Mar 4, 2001
                        Jesse way to go! Glad things are easing up for you some. Keep us informed on
                        your tests :)
                        You give us hope

                        Patricia / Alley
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                      • claudine intexas
                        I am so glad to hear that you have finally finished! I don t know anything about the eyes, mine didn t get real bad on treatment, but it never got better
                        Message 11 of 25 , Mar 4, 2001
                          I am so glad to hear that you have finally finished! I
                          don't know anything about the eyes, mine didn't get
                          real bad on treatment, but it never got better either.
                          The eye doctor said it was just normal aging, so who
                          knows. The rest of me felt pretty good within 4
                          weeks. Be sure and keep us posted on your lab tests.
                          Good luck!
                          Claudine

                          --- Suzy Balone <suzybalone@...> wrote:
                          > Jessie and ALL,
                          > All right , two months off treatment , I myself
                          > have finished tx as of
                          > yesterday, so am still waiting to feel good,
                          > hopefully I will!
                          > Does anyone know how long it might take for your
                          > eyes to return to
                          > their previous state? Was wondering how long I
                          > should go after tx to get
                          > an eye exam. I am so excited and wasn to thank each
                          > and everyone of you for
                          > the support, prayers, and generosity of your time
                          > and knowledge shared on
                          > this site as well as other sites.
                          > Brain fog was getting pretty bad at the end,
                          > hopefully that will clear also.
                          > If my sinuses would clear, it would be great!! I
                          > will go in Monday for my
                          > final blood work, to see if I am still undectable,
                          > then will let you all
                          > know
                          >
                          > THANK YOU ALL FROM THE BOTTOM OF MY HEART : )
                          >
                          > Suzy
                          > PS
                          > Good luck on your three month test Jessie
                          >
                          >
                          >
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                        • Constance Dickson
                          Suzy, mine got better after I was daignosed with Diabetes and went on meds for it. I don t know if this helps you at all, but that is what happened to me.
                          Message 12 of 25 , Mar 4, 2001
                            Suzy, mine got better after I was daignosed with
                            Diabetes and went on meds for it. I don't know if
                            this helps you at all, but that is what happened to
                            me. Good Luck, Connie


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                          • Suzy Balone
                            Claudine, Bottomed out again on my WBC s 2.1. RBC s 2.7, no wonder I have felt so crummy, just got the results today from yesterday so hope to be feeling
                            Message 13 of 25 , Mar 6, 2001
                              Claudine,
                              Bottomed out again on my WBC's 2.1.
                              RBC's 2.7, no wonder I have felt so crummy, just got the results today from
                              yesterday so hope to be feeling better soon since I don't have to take the
                              tx. can't keep much down either, Things should start looking up though and
                              any way I MADE IT! Whew what a long haul, will keep ou posted on my pcr's
                              Thanks for your support
                              Suzy


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                            • Suzy Balone
                              Thanks Connie, Hope things are going well this time around, good work with the interview, wish I could have seen it Suzy
                              Message 14 of 25 , Mar 6, 2001
                                Thanks Connie,
                                Hope things are going well this time around, good work with the interview,
                                wish I could have seen it
                                Suzy




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                              • Suzy Balone
                                Thanks Claudine you are an abundant wealth of information, I did quit taking it, it was wonderful to have regular bowel movements again but was gettign
                                Message 15 of 25 , Dec 21, 2001
                                  Thanks Claudine
                                  you are an abundant wealth of information, I did quit taking it, it was
                                  wonderful to have regular bowel movements again but was gettign tired of
                                  taking all those pills,
                                  Dr said just take some colace, tried that a long ti,e ago but will give it
                                  another whirl,, have tried tat's flax, sunflower seeds and almond mixture
                                  as well as having hot cereal every morning ( or most) and adding bran to it,
                                  have been exercising, just must have a sluggish bowel, I can understand
                                  about putting too many things in your body which i s why I wasn't doing it
                                  all the time. well once agin thanks
                                  Suzy



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                                • Carol
                                  Sorry Suzy, I didn t read your message very good the first time. Tatezi quit the group but I keep in contact with her and she s doing ok. Carol ... From: Suzy
                                  Message 16 of 25 , Oct 1, 2003
                                    Sorry Suzy, I didn't read your message very good the first time. Tatezi quit the group but I keep in contact with her and she's doing ok.

                                    Carol
                                    ----- Original Message -----
                                    From: Suzy Balone
                                    To: GIWorld-Hepatitis@yahoogroups.com
                                    Sent: Wednesday, October 01, 2003 12:20 PM
                                    Subject: Re: [GIWorld-Hepatitis] RE: I'm giving up too / Carol


                                    what level does msm raise? and guess i will have to keep reading to find ot
                                    what happened to tat


                                    I told my doc that I was going to take MSM to raise my level,

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