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Re: [GIWorld-Hepatitis] Treatment considerations in patients with hepatitis C...

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  • jtwagers7@aol.com
    Good info provided, (good things for all of us to consider) and it was especially good for me at this time in my treatment plans . I saved that one to my
    Message 1 of 9 , Jan 14, 2004
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      Good info provided, (good things for all of us to consider) and it was
      especially good for me at this time in my "treatment plans". I saved that one to
      my favorites.

      Julie


      [Non-text portions of this message have been removed]
    • w.m.landstra
      HI Julie.On the subject of doing treatment again I.ll tell you my experience with tx.I was diagnosed HepC about seven yrs ago,went to the doc. for a checkup
      Message 2 of 9 , Jan 15, 2004
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        HI Julie.On the subject of doing treatment again I.ll tell you my experience with tx.I was diagnosed HepC about seven yrs ago,went to the doc. for a checkup because I was going on a long trip to asia,a week later he told me that I had antibodies for Hepc.After twee weeks the pcr showed positive for HepC.I did.nt go to asia but spend a lot of time in the chineses quarter of amsterdam to make up for it,lol,.Anyway my live was shattered and I decided to fight back.The first tx I failed,combo,6 months,the second one,also combo but for one year,also failed.Then I had two trials with high doses of interferon,failed.Then the new tx,the PEG came on the market here and I went for it,it worked and now I.am 1,5.yrs svr,sustained response.Although I still don.t believe it.With the combo I had severe side-effects of which the worse was brainfog and sleeplesness.With the PEG considerable less.You hve three options.1.do nothing (and all the time you.re thinking how this little bastard virus is doing damage to yr liver!)2.wait untill better tx comes along,protease blockers,but that can take a long time,or get into a study.3.Do tx again with the roche Pegasys,has the advantage that you.re doing something about it and the changes of svr a great,there.re many on this group who have attained a svr.Nobody can make up yr mind for you,think about it carefully,get as much info as possible and talk to people who really know and will support you.Take yr time,the virus is dangerous but slow,in the virus-olympics it will not even get a bronze medal.Keep up yr. spirits,live is worth it.Goodluck and courage with yr. decision.Willem.
        ----- Original Message -----
        From: jtwagers7@...
        To: GIWorld-Hepatitis@yahoogroups.com
        Sent: Wednesday, January 14, 2004 9:47 PM
        Subject: Re: [GIWorld-Hepatitis] Treatment considerations in patients with hepatitis C...


        Good info provided, (good things for all of us to consider) and it was
        especially good for me at this time in my "treatment plans". I saved that one to
        my favorites.

        Julie


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



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      • jtwagers7@aol.com
        Hi Willem! Thanks so much for giving me your experience with treatment and your support. (And my GOSH -- did you ever go through the treatment -- Whew ! )
        Message 3 of 9 , Jan 15, 2004
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          Hi Willem! Thanks so much for giving me your experience with treatment and
          your support. (And my GOSH -- did you ever go through the treatment -- Whew
          ! ) When you decided you were going to "fight back", you weren't joking,
          huh? Big congratulations and more on the 1.5 yrs SVR ! Way to go!

          I apologize in advance for this long note, but ..............

          Oh yes -- the devastation from being "diagnosed" can floor ya! (sure did
          floor me).

          But the strange thing (or rather ironic thing) in my case was that for at
          least 3 years prior to diagnosis, I felt awful and kept going to the doctor
          with "strange complaints" (couldn't sleep, felt "weird", had tingling in my
          extremities, had joint pain, night sweats, etc.) HIV, thyroid disorder,
          diabetes, etc., were all ruled out (CBC including LFTs were all within normal range
          each time, too). I was therefore referred to a shrink, where I was diagnosed
          "severe, chronic depression". Over the next two years and under "therapy"
          for this "depression", I never responded to the antidepressants (and in fact
          was feeling only WORSE as time went on). I'm an RN and at that time was
          pulling 12 hr shifts. I felt like I could no longer function at my job (at least
          not safely with the degree of fatigue I had). My shrink agreed and
          recommended I file for disability. I resigned my position in Jan 1999 (which not
          only devastated me but also devastated my colleagues). I just told everyone
          "I need a break -- I'm burnt out".

          With the help of an attorney and my continued "deterioration", I was granted
          a fully favorable ruling by SSA in 2001. Once I got the favorable ruling
          and began getting my disability payments, I quit going to my shrink because 1)
          I was fed up with "therapy" and 2) I was fed up with not responding to
          antidepressants, and 3) I was tired of paying out megabucks for "psychotherapy"
          that hadn't helped yet ! LOL ! For the next two years, I coped with this
          "depression" by isolating myself. I was embarrrassed to tell ANYONE that I
          had a "mental disorder" and was on disability, and I coped the best I could --
          which was to basically stay home and not talk to anyone anymore about how I
          felt. I was too tired to do anything anyhow! LOL! I felt scared, too,
          because I felt like I was dying and no one truly believed I felt bad. I didn't
          look sick! There had been nothing in my lab work over two years that would
          indicate I had REASON to feel bad, and I even began to wonder if it was "all in
          my head".

          Then, in May 2003, a strange rash appeared on my face, chest, and upper
          arms. I had also noticed some bruises on my buttocks and upper thighs that I had
          NO idea where they had come from. The rash looked like a LUPUS rash to me,
          and so I went to my primary care provider for evaluation. He commented the rash
          looked "insignificant" to him, and then he asked if I was still seeing my
          psychiatrist (which made me angry because it was a comment that implied I was
          "overreacting" to my "bodily complaints"). I asked to be tested for lupus,
          and the doc agreed, and he also another CBC. The lupus panel was negative, but
          this time my SGPT / SGOT (ALTs) were slighly elevated, and other LFT's were
          also abnormal (rbcs, platelets). I didn't drink alcohol, and so I KNEW
          something was wrong with me (and I was almost relieved to have "abnormal labs".
          Doc did a hep panel, I had Hep C antibodies, was then referred to GI for
          workup, my viral count was low, I was recommended for biopsy, it showed moderate
          inflammation and mild fibrosis (Grade 3 / Stage 2), but I had no evidence of
          liver cancer, no fatty liver, no iron, alk phos and bilirubin were normal, no
          ammonia, etc., (i.e. I was in pretty good shape as far as the overall picture).
          BUT -- since I was already sitting at Grade 3 / Stage 2 and was Genotype 1a,
          treatment was recommended. After I was counseled by my GI doc on the
          available treatment, my chances of responding favorably (50%), the side effects,
          etc., I began researching on my own.

          While learning as much as I could about this stuff, I realized that my
          "symptoms" over the last several years had been -- in part -- due to my own body's
          immune response to this virus in my body (i.e. my body was producing
          inteferon trying to battle the virus). As strange as it may sound, I actually
          felt somewhat relieved to know that my "feeling sickly" had not been "just in my
          head" or on account of "severe depression". Granted, I was indeed
          clinically depressed, but after learning about the symptoms of HCV and about the side
          effects from interferon, I felt relieved (or at least "justified") in having
          complained for so many years about feeling bad. I wanted to shout "I told
          you it wasn't all in my head" LOL!

          I am enrolled in the Peggasist Research Program, and so -- whew -- thank
          goodness I can at least receive the combo meds at no cost and for however long the
          doc recommends I continue treatment.

          This "experience" has been a whopping adjustment indeed. Living with Hep C
          is difficult. It's been my experience that -- even though they're sympathetic
          -- family, friends, (and even doctors) who don't HAVE Hep C can't quite
          "relate" to how bad it can make you feel. Some of us don't "look sick". The
          general public, as well, is generally ignorant to this virus, to the modes of
          transmission, etc., and it's just overwhelming at times to think about what
          might be in store for me at this point in my life WITH or WITHOUT treatment.
          I'm single, I live alone, I am the soul person who takes care of not only MY
          affairs but my elderly parents' affairs, and it's just scary when I think that I
          may have no dependable "assistance" if I need it when on treatment. The
          scariest thing is doing this "alone" (or feeling that you're alone).

          My next GI appointment to "talk about starting treatment again" is 1/30/04.
          From now until then, I will be "psyching myself up". I want to return to
          the work force one day and be the person I used to be (not sick feeling from
          chronic Hep C). To get to that point will require ridding my body of this
          virus by undergoing the recommended treatment. Even though I feel relatively
          "well" now (not as fatigued, more energetic, not as depressed feeling), I know
          there will come the day that I will probably feel "bad" again (either from
          liver damage occurring from the virus) or from the treatment sides. I'm much
          more willing to feel "bad" because I attempted treatment again than to feel
          bad because I didn't attempt again. Gotta keep fighting.

          Let me shut up now -- LOL! I'm rambling and venting. Thanks for listening
          to all of it.

          Julie



          In a message dated 1/15/2004 4:25:03 AM Eastern Standard Time,
          lands142@... writes:


          > HI Julie.On the subject of doing treatment again I.ll tell you my
          > experience with tx.I was diagnosed HepC about seven yrs ago,went to the doc. for a
          > checkup because I was going on a long trip to asia,a week later he told me that
          > I had antibodies for Hepc.After twee weeks the pcr showed positive for HepC.I
          > did.nt go to asia but spend a lot of time in the chineses quarter of
          > amsterdam to make up for it,lol,.Anyway my live was shattered and I decided to fight
          > back.The first tx I failed,combo,6 months,the second one,also combo but for
          > one year,also failed.Then I had two trials with high doses of
          > interferon,failed.Then the new tx,the PEG came on the market here and I went for it,it
          > worked and now I.am 1,5.yrs svr,sustained response.Although I still don.t believe
          > it.With the combo I had severe side-effects of which the worse was brainfog
          > and sleeplesness.With the PEG considerable less.You hve three options.1.do
          > nothing (and all the time you.re thinking how this little bastard virus is doing
          > damage to yr liver!)2.wait untill better tx comes along,protease
          > blockers,but that can take a long time,or get into a study.3.Do tx again with the roche
          > Pegasys,has the advantage that you.re doing something about it and the
          > changes of svr a great,there.re many on this group who have attained a svr.Nobody
          > can make up yr mind for you,think about it carefully,get as much info as
          > possible and talk to people who really know and will support you.Take yr time,the
          > virus is dangerous but slow,in the virus-olympics it will not even get a
          > bronze medal.Keep up yr. spirits,live is worth it.Goodluck and courage with yr.
          > decision.Willem.
          > ----- Original Message -----
          > From: jtwagers7@...
          > To: GIWorld-Hepatitis@yahoogroups.com
          > Sent: Wednesday, January 14, 2004 9:47 PM
          > Subject: Re: [GIWorld-Hepatitis] Treatment considerations in patients with
          > hepatitis C...
          >
          >
          > Good info provided, (good things for all of us to consider) and it was
          > especially good for me at this time in my "treatment plans". I saved
          > that one to
          > my favorites.
          >
          > Julie
          >



          [Non-text portions of this message have been removed]
        • alleypat
          Julie, Unfortunately, your plight is all too familiar. We hear it quite often. I had been feeling bad for years. Had chronic migraines, bladder infections,
          Message 4 of 9 , Jan 15, 2004
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            Julie,

            Unfortunately, your plight is all too familiar. We hear it quite often.

            I had been feeling bad for years. Had chronic migraines, bladder infections, kidney infections, sinus infections which weren't really infected, docs said I had all the symptoms but usually no infection.

            I kept getting weaker and weaker. I worked out 3 times a week with weights and tai chi and felt worse instead of better. I marked it up to having teens and remarrying, working and going to school at night. I stopped going to school at night, thot that would help. It didn't.

            Then I began having "the flu". Nobody else had the flu and I've never had the flu before in my life, not even a cold. Before the "infections" I'd rarely been ill. I'd take a or two off work and rest, feel better, go back to work.

            My mental health was getting worse but I didn't realize it at the time. I thot for a while that my new husband might be poisoning me (overactive imagination :).

            This was in the late 80's. On my honeymoon I was so exhausted all I did was sleep and sit on the beach. I didn't even have the energy to have sex! hahahaha

            What saved me was donating blood. Finally the test for the antibodies was developed and in 89 or 90, I can't remember the exact year, I donated at work and was notified 6 mo later that I tested pos for hbv and hcv. I had no idea what these were and was so relieved it wasn't hiv!

            All these years I've donated twice a year religiously. Who knows how many people have gotten my tainted blood. I don't know how long I've had it. I could have gotten it sexually when I was single, unlikely, or from a C section or rho gam shots in the 70's.

            I have mild fibrosis and normal liver enzymes. All my blood work looks normal. I did treatment a few years ago and cleared while I was on treatment but relapsed at the 6th mo post pcr test.

            I won't do treatment again, and actually can't, because 6 mo after I finished the hep treatment I discovered I had malignant melanoma and I went back on interferon, this time high dose interferon, for another 48 weeks. One month of that was IV. Even that didn't get rid of the virus! And I can't do ribavirin again, because it's a carcinogen. I don't need any help getting cancer, thank you very much. (genotype 1b)

            On the hep treatment I didn't feel that bad. After 6 or 7 mo I got bad migraines and very bad mood swinigs, but the flu like pains and aches never hit. Now I did get really bad withdrawals the first month after treatment. I thot I was going thru physical hell.

            After the hep treatment I got hives for 2 1/2 years. The interferon messed with my immune system. It screwed with my thyroid while I was on treatment, but it went back to normal when I finished treatment, which is pretty normal with treatment.

            I highly recommend anyone doing treatment find a good antidepressant and get on it several weeks BEFORE starting treatment. It takes that long for them to get to working. Interferon is a known depressant. It messes with the chemicals in your brain. It is not like you have the choice to be depressed or not be depressed. Very very few people do NOT get depressed on treatment.

            I found out that I cannot take SSRI's (paxil, celexa,zoloft, lexapro, etc) because they make me depressed. I have to take Wellbutrin. My gastro gave me SSRI's because this is the routine antidepressant prescribed for heppers on treatment. However, it made me worse, more depressed, more moody. I didn't realize the problem until I was off treatment and took myself off the antidepressants (slowly, do not suddenly stop antidepressants).

            When I realized I was going back on interferon for the cancer, I found a clinic that specializes ini chronic illnesses. I knew I would need some special help with this hep and what the interferon does to me. My cancer doctor just looked at me like I was from outer space when I told him I've already experienced interferon and what antidepressant did he rercommend? He said he didn't put people on them. I knew them I'd better find some extra help! So I found this clinic and they've really saved my mental life.

            The Wellbutrin has given me some energy, whereas the SSRI's made me sleep all the time. SSRI's made me gain weight.

            Now I deal with fibromyalgia and chronic fatigue from the hep c and triggered by the treatment, but it's getting a bit better.

            While you may feel bad from treatment sides, I hope you don't have to feel bad from the hep. If you take care of yourself and depending on your age, you may not have to worry about that too much. With mild fibrosis, I probably won't have to worry a bout my liver the rest of my life, just deal with the sides.

            I'm sorry you have to do more treatment. But good luck to you!

            Alley
            Grand Prairie, Tx

            [Non-text portions of this message have been removed]
          • claudine intexas
            Dear Willam, You are a real inspiration. It still makes me feel good to hear your story of your long road to success. Keep telling it! Claudine ...
            Message 5 of 9 , Jan 15, 2004
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              Dear Willam,

              You are a real inspiration. It still makes me feel good to hear your
              story of your long road to success. Keep telling it!

              Claudine

              --- "w.m.landstra" <lands142@...> wrote:
              > HI Julie.On the subject of doing treatment again I.ll tell you my
              > experience with tx.I was diagnosed HepC about seven yrs ago,went to
              > the doc. for a checkup because I was going on a long trip to asia,a
              > week later he told me that I had antibodies for Hepc.After twee
              > weeks the pcr showed positive for HepC.I did.nt go to asia but
              > spend a lot of time in the chineses quarter of amsterdam to make up
              > for it,lol,.Anyway my live was shattered and I decided to fight
              > back.The first tx I failed,combo,6 months,the second one,also combo
              > but for one year,also failed.Then I had two trials with high doses
              > of interferon,failed.Then the new tx,the PEG came on the market
              > here and I went for it,it worked and now I.am 1,5.yrs svr,sustained
              > response.Although I still don.t believe it.With the combo I had
              > severe side-effects of which the worse was brainfog and
              > sleeplesness.With the PEG considerable less.You hve three
              > options.1.do nothing (and all the time you.re thinking how this
              > little bastard virus is doing damage to yr liver!)2.wait untill
              > better tx comes along,protease blockers,but that can take a long
              > time,or get into a study.3.Do tx again with the roche Pegasys,has
              > the advantage that you.re doing something about it and the changes
              > of svr a great,there.re many on this group who have attained a
              > svr.Nobody can make up yr mind for you,think about it carefully,get
              > as much info as possible and talk to people who really know and
              > will support you.Take yr time,the virus is dangerous but slow,in
              > the virus-olympics it will not even get a bronze medal.Keep up yr.
              > spirits,live is worth it.Goodluck and courage with yr.
              > decision.Willem.
              > ----- Original Message -----
              > From: jtwagers7@...
              > To: GIWorld-Hepatitis@yahoogroups.com
              > Sent: Wednesday, January 14, 2004 9:47 PM
              > Subject: Re: [GIWorld-Hepatitis] Treatment considerations in
              > patients with hepatitis C...
              >
              >
              > Good info provided, (good things for all of us to consider) and
              > it was
              > especially good for me at this time in my "treatment plans". I
              > saved that one to
              > my favorites.
              >
              > Julie
              >
              >
              > [Non-text portions of this message have been removed]
              >
              >
              >
              > Welcome to GIHepWorld
              >
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            • claudine intexas
              ... . ... If I only had a dollar for every time I ve heard someone with HCV say this or something very similar! It is indeed VERY frustrating. Even my husband
              Message 6 of 9 , Jan 15, 2004
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                --- jtwagers7@... wrote:
                .
                >
                > This "experience" has been a whopping adjustment indeed. Living
                > with Hep C
                > is difficult. It's been my experience that -- even though they're
                > sympathetic
                > -- family, friends, (and even doctors) who don't HAVE Hep C can't
                > quite
                > "relate" to how bad it can make you feel. Some of us don't "look
                > sick". The
                > general public, as well, is generally ignorant to this virus, to
                > the modes of
                > transmission, etc., and it's just overwhelming at times .....

                If I only had a dollar for every time I've heard someone with HCV say
                this or something very similar! It is indeed VERY frustrating. Even
                my husband still has problems understanding how tired I can get so
                fast. Why do I need so many naps? I don't LOOK sick! If I don't look
                sick, can I REALLY be sick? Do I really need to rest, or am I just
                being lazy???? I used to never hesitate to talk about having HCV.
                Now, I'd rather not mention it. I am, frankly, tired of explaining it
                to people who I figure are NEVER going to understand. Oddly enough
                (or maybe not, who knows) I think the endocrinologist I used to see
                for my hypothyroidism understood the effects HCV can have on a person
                better than anyone else, including my GI doc (who I do think is an
                excellent doctor.) On the other side of the coin, I have to be
                careful what I say to my mother or [especially] my father. They
                over-react to any mention of me being tired or that I took a nap! I
                can't win, lol!

                > My next GI appointment to "talk about starting treatment again" is
                > 1/30/04.
                > From now until then, I will be "psyching myself up". I want to
                > return to
                > the work force one day and be the person I used to be (not sick
                > feeling from
                > chronic Hep C). To get to that point will require ridding my body
                > of this
                > virus by undergoing the recommended treatment. Even though I feel
                > relatively
                > "well" now (not as fatigued, more energetic, not as depressed
                > feeling), I know
                > there will come the day that I will probably feel "bad" again
                > (either from
                > liver damage occurring from the virus) or from the treatment
                > sides. I'm much
                > more willing to feel "bad" because I attempted treatment again than
                > to feel
                > bad because I didn't attempt again. Gotta keep fighting.

                Good for you! Hang in there, and hang on to that attitude. It really
                can make a big difference.

                Good luck,
                Claudine

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              • jtwagers7@aol.com
                Hi Claudine, and thanks so much for the reply. Yes, it truly IS frustrating to feel the exhaustion and to feel like you have to explain it to someone or feel
                Message 7 of 9 , Jan 16, 2004
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                  Hi Claudine, and thanks so much for the reply. Yes, it truly IS frustrating
                  to feel the exhaustion and to feel like you have to explain it to someone or
                  feel guilty if you take a nap. The progression of my fatigue and exhaustion
                  and inabilty to "keep up" like I used to is what ultimately caused me and
                  boyfriend (of five years) to split ways. Six months after he moved out (he lived
                  here with me) I was diagnosed Hep C. I got in touch with him and gave him
                  the news. He tested negative -- thank GOD. With the news, he said he wanted
                  us to talk about "getting back together" (him move back in), and he promised
                  he would start doing his share around the house, yard, and that he would "help
                  me through this", and wouldn't be ugly anymore if I didn't feel good (yadda
                  yadda) To make a long story short -- I have said "no thank you". I've come
                  to terms with the fact that I would rather battle this dragon alone (and
                  SHOULD) than to battle it with someone who only made me feel more fatigued and
                  depressed and worse. LOL! So....I guess something good HAS come from my
                  diagnosis. I have become more determined to not settle for less and to keep
                  those who have caused unnecessary grief before OUT of my space now. LOL!

                  Even though I complain about "being scared" at the thoughts of "being alone"
                  I'm actually in MUCH better straits "being alone" than someone with Hep C
                  who's NOT alone yet whose spouse is not supportive. It's a difficult thing for
                  both parties. Very difficult.

                  Hugs to you and to all. Gotta go fill my coffee up! I slept LATE this
                  morning!

                  Julie
                  PS. My fonts are HUGE this morning (this is my first email of the day). I
                  don't know why they are so big, but I hope it doesn't mean that this email
                  won't send.

                  ====================================
                  In a message dated 1/15/2004 11:57:34 PM Eastern Standard Time,
                  claudineintexas@... writes:


                  > If I only had a dollar for every time I've heard someone with HCV say
                  > this or something very similar! It is indeed VERY frustrating. Even
                  > my husband still has problems understanding how tired I can get so
                  > fast. Why do I need so many naps? I don't LOOK sick! If I don't look
                  > sick, can I REALLY be sick? Do I really need to rest, or am I just
                  > being lazy???? I used to never hesitate to talk about having HCV.
                  > Now, I'd rather not mention it. I am, frankly, tired of explaining it
                  > to people who I figure are NEVER going to understand. Oddly enough
                  > (or maybe not, who knows) I think the endocrinologist I used to see
                  > for my hypothyroidism understood the effects HCV can have on a person
                  > better than anyone else, including my GI doc (who I do think is an
                  > excellent doctor.) On the other side of the coin, I have to be
                  > careful what I say to my mother or [especially] my father. They
                  > over-react to any mention of me being tired or that I took a nap! I
                  > can't win, lol!
                  >
                  >



                  [Non-text portions of this message have been removed]
                • jtwagers7@aol.com
                  Hi Alley! Golly..... did your story EVER hit home with me, and I enjoyed reading every word of it. I, too, am NOT a candidate for ANY SSRI because -- in
                  Message 8 of 9 , Jan 16, 2004
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                    Hi Alley! Golly..... did your story EVER hit home with me, and I enjoyed
                    reading every word of it. I, too, am NOT a candidate for ANY SSRI because --
                    in retrospect -- I complained MORE of depression while ON THEM than when NOT on
                    them (anti D's). In 2000, I recall (while being on Prozac) getting so
                    violently sick (vomiting) that I had to go to the ER. No one in the ER attributed
                    my sudden violent illness to the Prozac I was taking (I had been on it for
                    about 4 weeks), I didn't suspect it was the Prozac at that time, and my
                    "pewking my guts out with no fever and no abnormal labs" was chalked up to "probably
                    got some kind of stomach virus". I kept on taking the Prozac, and I noticed
                    that I was getting "car sick" and felt nauseated MOST of the time, and so I
                    stopped the Prozac (on my own). I wasn't about to hear from the shrink
                    (again) "give it time -- it takes TIME for the drug to get in your system and start
                    working". SHEESH! I would hear that alot from the shrinks (and I know
                    that's true), but I also know now that some people simply cannot take SSRIs.
                    The Prozac, Paxil, Effexor, Celexa that was tried on me for three years ? ?
                    The whole time I felt like I was DYING (but, I kept taking the anti-d's
                    because I wanted to be a "good patient"). When I finally refused
                    "psychotherapy" and stopped taking antidepressants, I felt SO MUCH BETTER as far as my
                    overall energy level. Then, when I was diagnosed Hep C and they MADE ME go on
                    Lexapro (another SSRI that's supposed to be "liver friendly"), I thought for
                    SURE I was dying. I went from sleeping 2 - 3 hrs per day to sleeping 14 - 16
                    hrs out of the day and felt like I couldn't MOVE. It was so scarey feeling
                    that tired -- I truly thought that it was my hepatitis that was making me feel
                    like I was dying. I thought my sleeping 14 - 16 hrs per day meant I had
                    encephelopathy, and I was scared to death. I finally thought "it's this daggone
                    Lexapro that's making me feel like crap", and I stopped it. I did go through
                    some withdraw from stopping it suddenly (which was NO fun), but at least my
                    energy level began rising within a few weeks of being off that mess, and so --
                    2+2 =4. Lexapro and 16 hrs of sleep and no Lexapro and feeling better =
                    SSRI's are not for me. LOL.

                    I am SO adamant now (as is my shrink and GI doc) that they will NEVER put me
                    on another SSRI no matter what. Those things almost killed me, I think. It
                    was NOT "liver friendly" for me (LFT's went UP), and I felt like pure H E
                    double L while taking SSRI's.

                    So....... this ole gal ain't ever going down the SSRI road again - lol.
                    They've never tried Wellbutrin on me. My GI doc, though, agreed that -- since
                    I had never responded to antidepressants and only felt worse on them -- that I
                    could attempt the treatment without taking them and that we (me and him in
                    consult with shrink) would approach any "depression" I might have from
                    treatment from a different stand point. My GI doc said if I got super depressed
                    while on treatment or if I could not sleep, he might try me on low dose Elavil.
                    I am on SSD and do not work, and while that's depressing in itself, it does
                    offer me the freedom of coping with this stuff in ways others who DO WORK
                    can't. When and if I get so exhausted feeling I feel like I can't move, I CAN
                    "go lay down", whereas someone who works cannot.

                    When I see someone with Hep C (who's on an SSRI) and who's complaining about
                    suffering severe exhaustion and worsening depression, I always warn about the
                    side effects that SSRI's can have on SOME people (simply put -- some cannot
                    tolerate them at all). The shrinks and GI docs do not tell you that only 30%
                    of those treated for depression respond favorably, NOR DO THEY TELL YOU to
                    "taper" the dosage if you decide to stop taking it. I stopped cold turkey (the
                    Lexapro), and I then I began having "withdrawal" (which I didn't even know
                    could occur). I called my shrink about 5 days after having stopped the
                    Lexapro, and she said "you're probably going through withdrawal -- you aren't
                    supposed to suddenly stop taking them -- you must taper off".

                    (hehehehehe. I'm so good at treating myself it's pathetic! LOL).
                    Anyhow..... those things (SSRI's) can be outright dangerous in my opinion for some, and
                    they are especially dangerous when the doc prescribing them does not counsel
                    the patient on "coming off the drug". There is no warning on the bottle that
                    says "do not stop this medicine without consulting your doctor". Well there
                    should be!!
                    When I responded so horribly to Lexapro, my shrink flat out admitted that
                    antidepressants (when prescribed) are often chosen because it's "the newest one
                    on the market" and because "there are lots of sample packs" to give the
                    patient. I can't fault them for that -- but I do fault those docs who do not tell
                    their patients that they might feel 10 times WORSE on an antidepressant, or
                    that they might go through "withdraw" if they stop them suddenly. You (and
                    others) might find this interesting (link below).

                    http://www.benzo.org.uk/healy.htm

                    Julie


                    > Dependence on Antidepressants & Halting SSRIsPROTOCOL FOR THE WITHDRAWAL
                    > OF SSRI ANTIDEPRESSANTSby Dr David Healy MD, FRCPsych
                    > North Wales Department of Psychological Medicine,
                    > Bangor, Gwynedd LL57 2PW, Wales, UKFollowing the benzodiazepine crisis of
                    > the 1980s, psychiatrists and general practitioners turned with relief to the
                    > antidepressants, which the Royal Colleges of Psychiatrists & General
                    > Practitioners assured us and our patients did not cause dependence and were not
                    > addictive. I shared this belief. And indeed antidepressants are not addictive in the
                    > sense that they lead to altered motivational hierarchies such that an
                    > individual would mortgage their livelihoods and all they hold dear for further
                    > supplies of the drug. But patients are worried about being "hooked" on
                    > antidepressants and antidepressants can hook in the sense of making you physically
                    > dependent.In the 1960s the concept of therapeutic drug dependence on
                    > antipsychotics and antidepressants emerged and it became clear that some individuals
                    > might never be able to halt these drugs. Withdrawal from antipsychotics for
                    > instance could lead to tardive dyskinesia, which it was later recognised could
                    > emerge in the course of treatment(1). The fact that "withdrawal" could emerge
                    > while still on treatment with drugs that were not euphoriants and did not
                    > disrupt motivational hierarchies was completely incompatible with theories of
                    > addiction then and now. This, allied to the need to contain the use of opiates,
                    > LSD and amphetamines in 1960s, led to an eclipse of the concept of therapeutic
                    > drug dependence. Since the 1960s we have had a demonisation of some drugs
                    > and glorification of others. The bad drugs are supposedly characterised by
                    > dependence even though LSD and other bad drugs do not cause physical dependence.
                    > The good drugs are supposed to be free of this problem.Against this
                    > background, therapeutic drug dependence on benzodiazepines provoked a crisis. Patients
                    > resented being hooked and resented not being warned about the risks of
                    > getting hooked and further resented being blamed as authors of their own
                    > misfortune. The emergence of the SSRI antidepressants offered the possibility of an
                    > almost "political" compromise.From 1960 to 1990, the antidepressants were
                    > generally prescribed only to severely depressed patients, and in these patients
                    > evidence of relapse on discontinuation could often reasonably be seen as
                    > evidence of relapse of an illness. This position became harder to maintain in
                    > patients who had formerly been cases of Valium but who now became cases of Prozac,
                    > Seroxat, Lustral and Effexor. These patients did not have the severe
                    > conditions that might have been expected to lead to early relapse on
                    > discontinuation. Reports of withdrawal streamed in to regulators.SSRIsSSRI stands for
                    > selective serotonin reuptake inhibitor. This does not mean these drugs are
                    > selective to the serotonin system or that they are in some sense pharmacologically
                    > "clean". It means they have little effect on the norepinephrine/noradrenaline
                    > system. There are 6 SSRIs on the market:
                    >
                    > SSRI
                    >
                    US TRADE NAME

                    UK TRADE NAME

                    FluoxetineProzacProzac
                    ParoxetinePaxilSeroxat
                    SertralineZoloftLustral
                    CitalopramCelexaCipramil
                    EscitalopramLexaproCipralex
                    FluvoxamineLuvoxFaverin
                    VenlafaxineEffexorEfexor

                    Note: Venlafaxine in doses up to 150mg is an SSRI, over 150 mg it also
                    inhibits noradrenaline reuptake.FEATURES OF WITHDRAWAL/WITHDRAWAL SYMPTOMSThe common
                    symptoms on withdrawal from SSRIs break down into two groups(2). The first
                    group may be unlike anything you have had before and include:Dizziness
                    Headache
                    Muscle Spasms
                    Tremor
                    Electric Shock-like Sensations
                    Other Strange Tingling or Painful Sensations
                    Nausea, Diarrhoea, Flatulence
                    Dreams, including Vivid Dreams
                    AgitationThe second group overlaps with general nervousness and may lead to
                    you or your physician to think that all you have are features of your original
                    problem. These symptoms include:Depression
                    Lability of Mood
                    Irritability
                    Agitation
                    Confusion
                    Fatigue/Malaise
                    Flu-like Feelings
                    Insomnia or Drowsiness
                    Mood Swings
                    Sweating
                    Feelings of Unreality
                    Feelings of being Hot or ColdThese symptoms appear in anything between 20% to
                    50% of patients taking SSRIs, sometimes within hours of the last dose.
                    Paroxetine and Venlafaxine appear the most problematic agents at the moment but
                    similar symptoms are liable to occur with all SSRIs and to a lesser extent with
                    tricyclic antidepressants. In milder cases problems may clear up after a week or
                    two, but in others symptoms may continue weeks or months after the last dose
                    and for some patients it may not be possible to stop treatment. Specialist
                    help may benefit some patients in this latter group, if only to provide
                    suggestions on antidotes to continuing drug induced problems such as loss of libido.IS
                    THIS WITHDRAWAL?There are three ways to distinguish withdrawal from SSRIs from
                    the nervous problems that the SSRI might have been used to treat in the first
                    instance.First if the problem begins immediately on reducing or halting a
                    dose or begins within hours or days or perhaps even weeks of so doing then it is
                    more likely to be a withdrawal problem. If the original problem has been
                    treated and you are doing well, then on discontinuing treatment no new problems
                    should show up for several months.Second if the nervousness or other odd feelings
                    that appear on reducing or halting the SSRI (sometimes after just missing a
                    dose) clear up when you are put back on the SSRI or the dose is put back up,
                    then this also points towards a withdrawal problem rather than a return of the
                    original illness. When original illnesses return, they take a long time to
                    respond to treatment. The relatively immediate response of symptoms on
                    discontinuation to the reinstitution of treatment points towards a withdrawal
                    problem.Third the features of withdrawal may overlap with features of the nervous problem
                    for which you were first treated - both may contain elements of anxiety and
                    of depression. However withdrawal will also often contain new features not in
                    the original state such as pins and needles, tingling sensations, electric
                    shock sensations, pain and a general flu-like feeling. Before starting to
                    withdraw, it should be noted that many people will have no problems. Some will have
                    minimal problems, which may peak after a few days before diminishing. Symptoms
                    can remain for some weeks or months. Others will have greater problems but
                    these can be helped by the management plan outlined below.Finally however there
                    will be a small group of people who are simply unable to stop. It is important
                    to recognise this latter possibility in order to avoid punishing yourself.
                    Specialist help may make a difference for some people in this latter group, if
                    only to provide possible antidotes to attenuate the problems of ongoing SSRIs
                    such as loss of libido.MANAGEMENT OF WITHDRAWALWithdrawal from SSRIs is something
                    to be done in consultation with your physician. You may wish to show this to
                    your GP. Over-rapid withdrawal may even be medically hazardous, particularly
                    in older persons.
                    Convert the dose of SSRI you are on to an equivalent dose of Prozac liquid.
                    Seroxat/Paxil 20mg, Efexor 75mg, Cipramil/Celexa 20mgs. Lustrat/Zoloft 50mgs
                    are equivalent to 20mg of Prozac liquid. The rationale for this is that Prozac
                    has a very long half-life, which helps to minimise withdrawal problems. The
                    liquid form permits the dose to be reduced more slowly than can be done with
                    pills.
                    Stabilise on the Prozac for a week, then halve the dose.
                    If there has been no problem with step 2, the dose can be further halved.
                    Alternatively if there has been a problem from this point on the dose can be
                    reduced even more slowly in weekly increments.
                    From a dose of Prozac 10mgs liquid, consider reducing by 1mg every few days
                    over the course of several weeks - or months if need be. With Prozac liquid
                    this can be done by dilution.
                    If there are difficulties at any particular stage the answer is to wait at
                    that stage for a longer period of time before reducing further.
                    Withdrawal and dependence are physical phenomena. But some people can get
                    understandably phobic about withdrawal particularly if the experience is
                    literally shocking. If you think you may have become phobic, a clinical psychologist
                    may be able to help manage the phobic problem.
                    Self-help support groups can be invaluable. Join one. If there are none
                    nearby, consider setting one up. There will be lots of other people with a similar
                    problem.There is anecdotal evidence and some theoretical grounds to believe
                    that another option is to substitute St John's Wort for the SSRI. If a dose of 3
                    tablets of St John's Wort is tolerated instead of the SSRI, this can then be
                    reduced slowly - by one pill per fortnight or even per month.Some people for
                    understandable reasons may prefer this approach. But it needs to be noted that
                    St John's Wort has its own set of interactions with other pills and its own
                    problems and you may wish to consult your physician if this is the option you
                    choose.FOLLOW-UPThe problems posed by withdrawal may stabilise to the point
                    where you can get on with life. But in either this case or in cases where it is
                    not possible to withdraw, it is important to note ongoing problems and to get
                    your physician or someone to report them if possible.There are clear effects on
                    the heart from SSRIs. The list above does not include cardiac problems
                    occurring during the post-withdrawal period. Such problems if they occur may however
                    be related to withdrawal and should be noted and recorded.SSRIs are well-known
                    to impair sexual functioning. The conventional view has been that once the
                    drug is stopped, functioning comes back to normal There are indicators however
                    that this may not be true for everyone. If sexual functioning remains abnormal,
                    this should be brought to the attention of your physician, who will hopefully
                    report it.Withdrawal may reveal other continuing problems, similar to the
                    ongoing sexual dysfunction problem. It is important to report these. The best way
                    to find a remedy is to bring the problem to the attention of as many people
                    as possible.
                    Healy D (2001). Psychiatric Drugs Explained. Churchill Livingstone,
                    Edinburgh; Healy D (2001). The Creation of Psychopharmacology. Harvard University
                    Press, Cambridge Mass.
                    Rosenbaum JF, Fava M, Hoog SL, Ashcroft RC, Krebs W (1998). Selective
                    serotonin reuptake inhibitor discontinuation syndrome: a randomised clinical study.
                    Biological Psychiatry 44, 77-87;
                    SSRIs & Other Antidepressants : News & Links

                    « back · top · www.benzo.org.uk »



                    In a message dated 1/15/2004 4:56:50 PM Eastern Standard Time,
                    alleypat@... writes:


                    >
                    > Julie,
                    >
                    > Unfortunately, your plight is all too familiar. We hear it quite often.
                    >
                    > I had been feeling bad for years. Had chronic migraines, bladder
                    > infections, kidney infections, sinus infections which weren't really infected, docs
                    > said I had all the symptoms but usually no infection.
                    >
                    > I kept getting weaker and weaker. I worked out 3 times a week with weights
                    > and tai chi and felt worse instead of better. I marked it up to having
                    > teens and remarrying, working and going to school at night. I stopped going to
                    > school at night, thot that would help. It didn't.
                    >
                    > Then I began having "the flu". Nobody else had the flu and I've never had
                    > the flu before in my life, not even a cold. Before the "infections" I'd
                    > rarely been ill. I'd take a or two off work and rest, feel better, go back to
                    > work.
                    >
                    > My mental health was getting worse but I didn't realize it at the time. I
                    > thot for a while that my new husband might be poisoning me (overactive
                    > imagination :).
                    >
                    > This was in the late 80's. On my honeymoon I was so exhausted all I did
                    > was sleep and sit on the beach. I didn't even have the energy to have sex!
                    > hahahaha
                    >
                    > What saved me was donating blood. Finally the test for the antibodies
                    > was developed and in 89 or 90, I can't remember the exact year, I donated at
                    > work and was notified 6 mo later that I tested pos for hbv and hcv. I had no
                    > idea what these were and was so relieved it wasn't hiv!
                    >
                    > All these years I've donated twice a year religiously. Who knows how many
                    > people have gotten my tainted blood. I don't know how long I've had it. I
                    > could have gotten it sexually when I was single, unlikely, or from a C
                    > section or rho gam shots in the 70's.
                    >
                    > I have mild fibrosis and normal liver enzymes. All my blood work looks
                    > normal. I did treatment a few years ago and cleared while I was on treatment
                    > but relapsed at the 6th mo post pcr test.
                    >
                    > I won't do treatment again, and actually can't, because 6 mo after I
                    > finished the hep treatment I discovered I had malignant melanoma and I went back on
                    > interferon, this time high dose interferon, for another 48 weeks. One
                    > month of that was IV. Even that didn't get rid of the virus! And I can't do
                    > ribavirin again, because it's a carcinogen. I don't need any help getting
                    > cancer, thank you very much. (genotype 1b)
                    >
                    > On the hep treatment I didn't feel that bad. After 6 or 7 mo I got bad
                    > migraines and very bad mood swinigs, but the flu like pains and aches never
                    > hit. Now I did get really bad withdrawals the first month after treatment. I
                    > thot I was going thru physical hell.
                    >
                    > After the hep treatment I got hives for 2 1/2 years. The interferon messed
                    > with my immune system. It screwed with my thyroid while I was on treatment,
                    > but it went back to normal when I finished treatment, which is pretty normal
                    > with treatment.
                    >
                    > I highly recommend anyone doing treatment find a good antidepressant and get
                    > on it several weeks BEFORE starting treatment. It takes that long for
                    > them to get to working. Interferon is a known depressant. It messes with the
                    > chemicals in your brain. It is not like you have the choice to be depressed
                    > or not be depressed. Very very few people do NOT get depressed on
                    > treatment.
                    >
                    > I found out that I cannot take SSRI's (paxil, celexa,zoloft, lexapro, etc)
                    > because they make me depressed. I have to take Wellbutrin. My gastro gave
                    > me SSRI's because this is the routine antidepressant prescribed for heppers
                    > on treatment. However, it made me worse, more depressed, more moody. I didn't
                    > realize the problem until I was off treatment and took myself off the
                    > antidepressants (slowly, do not suddenly stop antidepressants).
                    >
                    > When I realized I was going back on interferon for the cancer, I found a
                    > clinic that specializes ini chronic illnesses. I knew I would need some special
                    > help with this hep and what the interferon does to me. My cancer doctor
                    > just looked at me like I was from outer space when I told him I've already
                    > experienced interferon and what antidepressant did he rercommend? He said he
                    > didn't put people on them. I knew them I'd better find some extra help! So I found
                    > this clinic and they've really saved my mental life.
                    >
                    > The Wellbutrin has given me some energy, whereas the SSRI's made me sleep
                    > all the time. SSRI's made me gain weight.
                    >
                    > Now I deal with fibromyalgia and chronic fatigue from the hep c and
                    > triggered by the treatment, but it's getting a bit better.
                    >
                    > While you may feel bad from treatment sides, I hope you don't have to feel
                    > bad from the hep. If you take care of yourself and depending on your age,
                    > you may not have to worry about that too much. With mild fibrosis, I probably
                    > won't have to worry a bout my liver the rest of my life, just deal with the
                    > sides.
                    >
                    > I'm sorry you have to do more treatment. But good luck to you!
                    >
                    > Alley
                    > Grand Prairie, Tx
                    >
                    >





















































































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                  • Alley
                    Julie, I can t imagine a shrink who doesn t know the sides of SSRI s. Jeez. When I filled the paperwork out for mine, she knew right away what was wrong and
                    Message 9 of 9 , Jan 16, 2004
                    • 0 Attachment
                      Julie,

                      I can't imagine a shrink who doesn't know the sides of SSRI's. Jeez. When I filled the paperwork out for mine, she knew right away what was wrong and took me off the SSRI's and had me try Wellbutrin. Wellbutrin works on dopamine, not seratonin (sp). She said it might not work either, but give it a try, and I did and it works for me, gives me a bit of a pick up.

                      If you are feeling fine with no anti d, stick with it. I don't know why docs are so stuck on those darn things, like they are panceas for the worlds problems. sheesh.

                      Alley

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