Loading ...
Sorry, an error occurred while loading the content.

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

Expand Messages
  • 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 1 of 25 , Mar 1, 2001
    • 0 Attachment
      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
      > >
      >
      >
      > __________________________________________________
      > Do You Yahoo!?
      > Get email at your own domain with Yahoo! Mail.
      > http://personal.mail.yahoo.com/
      >
      > Yahoo! Groups Sponsor
      [Become a Better Trader!]

      >
      > Welcome to GIHepWorld
      >
      > Post message: GIWorld-Hepatitis@yahoogroups.com
      > Subscribe: GIWorld-Hepatitis-subscribe@yahoogroups.com
      > Unsubscribe: GIWorld-Hepatitis-unsubscribe@yahoogroups.com
      > List owner: GIWorld-Hepatitis-owner@yahoogroups.com
      > URL to this page: http://groups.yahoo.com/group/GIWorld-Hepatitis
      >
      >
      > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


      [Non-text portions of this message have been removed]
    • 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 2 of 25 , Mar 1, 2001
      • 0 Attachment
        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 3 of 25 , Mar 1, 2001
        • 0 Attachment
          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


          __________________________________________________
          Do You Yahoo!?
          Get email at your own domain with Yahoo! Mail.
          http://personal.mail.yahoo.com/
        • 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 4 of 25 , Mar 1, 2001
          • 0 Attachment
            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@...
            -----------------------------
            My ICQ#:12631861<br>
            http://members.icq.com/12631861
            12631861@...
            -------------------------------------------------------
          • Alley/Pat
            tatezi said
            Message 5 of 25 , Mar 1, 2001
            • 0 Attachment
              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@...
              -----------------------------
              My ICQ#:12631861<br>
              http://members.icq.com/12631861
              12631861@...
              -------------------------------------------------------
            • 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 6 of 25 , Mar 3, 2001
              • 0 Attachment
                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
                > alleypat@...
                > -----------------------------
                > My ICQ#:12631861<br>
                > http://members.icq.com/12631861
                > 12631861@...
                > -------------------------------------------------------
                >
                >
                >
                > Yahoo! Groups Sponsor
                [Click Here!]

                >
                > Welcome to GIHepWorld
                >
                > Post message: GIWorld-Hepatitis@yahoogroups.com
                > Subscribe: GIWorld-Hepatitis-subscribe@yahoogroups.com
                > Unsubscribe: GIWorld-Hepatitis-unsubscribe@yahoogroups.com
                > List owner: GIWorld-Hepatitis-owner@yahoogroups.com
                > URL to this page: http://groups.yahoo.com/group/GIWorld-Hepatitis
                >
                >
                > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


                [Non-text portions of this message have been removed]
              • 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 7 of 25 , Mar 3, 2001
                • 0 Attachment
                  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 8 of 25 , Mar 3, 2001
                  • 0 Attachment
                    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


                    _________________________________________________________________
                    Get your FREE download of MSN Explorer at http://explorer.msn.com
                  • 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 9 of 25 , Mar 4, 2001
                    • 0 Attachment
                      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@...
                      -----------------------------
                      My ICQ#:12631861<br>
                      http://members.icq.com/12631861
                      12631861@...
                      -------------------------------------------------------
                    • 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 10 of 25 , Mar 4, 2001
                      • 0 Attachment
                        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
                        >
                        >
                        >
                        _________________________________________________________________
                        > Get your FREE download of MSN Explorer at
                        > http://explorer.msn.com
                        >
                        >


                        __________________________________________________
                        Do You Yahoo!?
                        Get email at your own domain with Yahoo! Mail.
                        http://personal.mail.yahoo.com/
                      • 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 11 of 25 , Mar 4, 2001
                        • 0 Attachment
                          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


                          __________________________________________________
                          Do You Yahoo!?
                          Get email at your own domain with Yahoo! Mail.
                          http://personal.mail.yahoo.com/
                        • 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 12 of 25 , Mar 6, 2001
                          • 0 Attachment
                            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


                            _________________________________________________________________
                            Get your FREE download of MSN Explorer at http://explorer.msn.com
                          • 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 13 of 25 , Mar 6, 2001
                            • 0 Attachment
                              Thanks Connie,
                              Hope things are going well this time around, good work with the interview,
                              wish I could have seen it
                              Suzy




                              _________________________________________________________________
                              Get your FREE download of MSN Explorer at http://explorer.msn.com
                            • 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 14 of 25 , Dec 21, 2001
                              • 0 Attachment
                                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



                                _________________________________________________________________
                                Chat with friends online, try MSN Messenger: http://messenger.msn.com
                              • 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 15 of 25 , Oct 1, 2003
                                • 0 Attachment
                                  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,

                                  _________________________________________________________________
                                  Frustrated with dial-up? Get high-speed for as low as $29.95/month
                                  (depending on the local service providers in your area).
                                  https://broadband.msn.com


                                  Yahoo! Groups Sponsor
                                  ADVERTISEMENT




                                  Welcome to GIHepWorld

                                  Post message: GIWorld-Hepatitis@yahoogroups.com
                                  Subscribe: GIWorld-Hepatitis-subscribe@yahoogroups.com
                                  Unsubscribe: GIWorld-Hepatitis-unsubscribe@yahoogroups.com
                                  List owner: GIWorld-Hepatitis-owner@yahoogroups.com
                                  URL to this page: http://groups.yahoo.com/group/GIWorld-Hepatitis


                                  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                                  [Non-text portions of this message have been removed]
                                Your message has been successfully submitted and would be delivered to recipients shortly.