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Re: [GIWorld-Hepatitis] Get the Show on the Road

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  • claudine intexas
    ... I have an appointment ... Hi Lora, I would not worry too much about doing your injection at 11:00am, or whenever you finally get in! ... sleep through the
    Message 1 of 11 , Aug 31, 2000
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      --- Lorad8@... wrote:
      I have an appointment
      > with the nurse on
      > Thursday, September 7 to learn how to inject, etc,
      > and will give myself my
      > first injection there. My appointment is for 11 am
      > and I am a bit concerned
      > about the sides hitting around mid day.


      Hi Lora,
      I would not worry too much about doing your
      injection at 11:00am, or whenever you finally get in!
      :) I know you hear to inject at 'bedtime' so you can
      sleep through the side effects, but for me, there was
      NO sleeping through THAT! I found doing my first
      injection at night, when I was exhausted, keyed-up,
      nervous, etc., from anticipating all day long, just
      made things worse for me. Not being so tired may give
      you that extra bit of strength needed to cope better
      with the usual awful side effects of the first
      injection. Things always seem worse when you are
      tired. So try to look on the bright side! When I was
      on treatment I kept doing my injections earlier and
      earlier, until I came to what was the 'right' time for
      me. (About 1:00pm) My sides always took 8 - 12 hours
      to hit, so by doing the injection earlier I finally
      got to the point where I could sleep though the worst,
      and feel halfway good the next day. Before I started
      injecting early I could barely function on the days
      following the injection. My experience is not very
      uncommon at all, either. Many people don't feel the
      effects of the interferon for several hours. It can
      really vary at lot. Try to pay attention to how it
      effects you so you can tailor your injection timing to
      what works best for you. Remember, the first
      injection can be pretty rough, but the next ones are
      much, much easier. (Those next ones you can probably
      sleep through!)
      Good luck to you!
      Claudine


      =====
      Claudine
      claudinecrews@...

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    • Lorad8@aol.com
      Claudine, Thanks so much for your advice. It definately helps to know that the time of day is unique to everyone. I am still nervous, but have heard from
      Message 2 of 11 , Sep 1, 2000
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        Claudine,
        Thanks so much for your advice. It definately helps to know that the time of
        day is unique to everyone. I am still nervous, but have heard from some
        peoplehere that it is possible to not have ANY sides. That, unfortunately,
        is not how my life usually goes!! my life is kind of "if it can happen, it
        will" LOL.... however. I am keeping a positive attitude and feel good about
        starting treatment--am I crazy or what ????
        Again, thanks for your support. Will keep you posted.

        Lora
      • Ken & Pat @home
        Lora.... I d call the pharmacy manager and complain and expect your extra 2 weeks supply to be covered for that $15 you already paid. Use your power to
        Message 3 of 11 , Sep 1, 2000
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          Lora.... I'd call the pharmacy manager and complain and expect your extra 2
          weeks supply to be covered for that $15 you already paid. Use your power to
          COMPLAIN LOUDLY and make a difference :) Who knows when the next hepper
          might thank you for it :)

          I used to do my shot at nite. Cause everyone telling me how awful the sides
          were. However, I feel much better doing treatment than I did with the hep
          sides I had before!! No more joint pain and no more muscle aches.

          I've moved my shot to the am now, cause after 3 months buildup in my system,
          it acts like a stimulant and why not sue that to my advantage? haha since my
          doc recommends as little caffeine as possible.

          My pharmacy part of my insurance is covered by Caremark. I pay $15 brand
          name/$5 generic for a months worth of meds (not the combo) at any pharmacy
          or I can have 3 months worth of a prescription mailed to them to be shipped
          to me for $15 (for name brand), $5 for generic.

          Now the combo is sent FedEx directly from the Caremark supplier. I get 3
          months of combo for $15.

          Some insurances allow you to get 3 months if you have the script mailed to
          them and they can mail it to you. Check out yours and see if they do.

          You never know what your sides will be, and they will change over time. My
          doc recommended taking ibuprofen or tylenol about 30 minutes before and take
          as needed. I never needed it, but many others do. Your doctor will help you
          (or should) with any sides you may experience.

          I hope you are on a good anti - depressant prior to beginning treatment!
          Interferon is a known depressant. It screws with your brain chemistry. And
          antidepressants usually take at least a few weeks to kick in fully (and you
          can't just stop them immediately.. they must be weaned off)

          I began taking Zoloft and wow did I notice that I immediately slept much
          better, and had more energy as a result! But it made me feel kinda dull, so
          I tried Celexa. It wasn't for me, so now I'm on Effexor XR and it seems to
          be just the right one for me. Sometimes it takes trying several to find the
          right "fit".

          Good luck! And let us know how it goes

          alley/Patricia
          ICQ 12631861
          alleypat@...
          http://www.flash.net/~alleypat
        • Ken & Pat @home
          Oh and another good piece of advice my doc gave me... Do your first injection on like a Friday, or Friday nite or Saturday if you can. At least when you can
          Message 4 of 11 , Sep 1, 2000
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            Oh and another good piece of advice my doc gave me...

            Do your first injection on like a Friday, or Friday nite or Saturday if you
            can. At least when you can anticipate some time off work in case you do
            experience side effects. But then again.. there's no guarantee you'll feel
            anything :)

            alley/Patricia
            ICQ 12631861
            alleypat@...
            http://www.flash.net/~alleypat
          • claudine intexas
            ... Better yet, if you have any sick days or vacation days coming using a few of them that first week might be a good idea. If you work for a really
            Message 5 of 11 , Sep 2, 2000
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              --- "Ken & Pat @home" <alleypat@...> wrote:
              > Oh and another good piece of advice my doc gave
              > me...
              > Do your first injection on like a Friday, or Friday
              > nite or Saturday if you
              > can. At least when you can anticipate some time off
              > work in case you do
              > experience side effects.

              Better yet, if you have any sick days or vacation days
              coming using a few of them that first week might be a
              good idea. If you work for a really
              easy-to-get-along-with boss who is flexible you might
              be able to just plan to take time off only if you need
              to, but if you must ask in advance for time off then
              that first week is often a rough time. The first few
              weeks can be kind of rough. It's too bad you can't
              tell in advance how it will affect you!



              =====
              Claudine
              claudinecrews@...

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            • Lorad8@aol.com
              I like all the job related tips! Unfortunately, or maybe it is FORTUNATELY, I am currently unemployed. Lost my job soon after I was diagnosed. I did day
              Message 6 of 11 , Sep 2, 2000
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                I like all the job related tips! Unfortunately, or maybe it is FORTUNATELY,
                I am currently unemployed. Lost my job soon after I was diagnosed. I did
                day care, and the parents kind of panicked. Anyway, my hubsand is working
                and has insurance, so at least that is covered. However, except for driving
                my two teenagers all over the universe, I do not have any job commitments.
                For this, right now, I am grateful.

                6 more days........:)
                peace, lora
              • Lorad8@aol.com
                I did call the pharmacy, and they called me back last night and said that the rest of my month s perscription has been ordered and I can pick it up on
                Message 7 of 11 , Sep 2, 2000
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                  I did call the pharmacy, and they called me back last night and said that the
                  "rest" of my month's perscription has been ordered and I can pick it up on
                  Tuesday, at NO CHARGE! Well, duh, I hope so! :) I thought I was supposed to
                  get a video and ice bag or something with my perscription. Is that right, or
                  am I in a total mind warp???

                  My doctor said he does not put people on anti-depressants just "because it
                  might happen". However, he did tell me that if I need them AFTER I start
                  treatment to let him know and he will perscribe.

                  It seems that most everyone recommends Ibuprofin for the muscle aches and
                  pains. I am on a blood thinner (coumadin) and cannot take anti-inflamatory
                  drugs. Any one have a good alternative for me????

                  Again, thanks for all your support.
                  lora
                • Ken & Pat @home
                  Message 8 of 11 , Sep 2, 2000
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                    <<My doctor said he does not put people on anti-depressants just "because it
                    might happen". However, he did tell me that if I need them AFTER I start
                    treatment to let him know and he will perscribe.>>

                    ok here's my uneducated opinon...

                    STOOOPID DOC!!!

                    It takes WEEKS for antidepressants to fully kick in. On combo you go postal
                    in SECONDS.

                    What do you do in the interim? Ask him that!

                    I got my "kit" (video and bag etc) when I went to the training class.

                    Well, I guess Tylenol might work. Maybe some herbal tea? I'm sure someone on
                    here has some good advice for that one :)

                    alley/Patricia
                    ICQ 12631861
                    alleypat@...
                    http://www.flash.net/~alleypat
                  • Pat Post
                    Hi Lora, I can relate to your anticipation. I was diagnosed 12-99 and decided to wait till the Pegalated TX becomes available, which I had heard would be
                    Message 9 of 11 , Sep 2, 2000
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                      Hi Lora, I can relate to your anticipation. I was diagnosed 12-99 and
                      decided to wait till the Pegalated TX becomes available, which I had heard
                      would be around 12-00. How did your biopsy come out? Was there any
                      fibrosis or worse? Is that why you are anxious to start the treatment? I
                      too am worried a bit about insurance, seems like if something can get
                      screwed up with the process it will. Hang in there and keep us posted, this
                      list has been very helpful for info and support. Take care, good luck with
                      your first shot. Pat P.


                      >From: Lorad8@...
                      >Reply-To: GIWorld-Hepatitis@egroups.com
                      >To: GIWorld-Hepatitis@egroups.com
                      >Subject: [GIWorld-Hepatitis] Get the Show on the Road
                      >Date: Fri, 1 Sep 2000 00:10:55 EDT
                      >
                      >Hi to all here on the list. I am writing today out of
                      >frustration,nervousness, tension and fear. (have I left any emotion
                      >out????
                      >:). I was diagnosed in September of 1999 with Hepatitis C and have been
                      >waiting for a Pegylated trial to begin here in Chicago ever since. Delay
                      >after delay and still the trial is not started. I finally decided that I
                      >needed to take charge and so went back to my Hepatologist. He agreed that
                      >it
                      >is time to "get the show on the road" and wrote my a perscription. I had
                      >already checked with my insurance company, and was assured that I would
                      >only
                      >have to pay my $15 co-pay each month. Welllll, when I went to pick up the
                      >perscription from the pharmacy yesterday, the pharmacist said my insurance
                      >would only pay for two weeks at a time, each time for $15. I had never
                      >heard
                      >of that, but she said that that was my insurance. So, I paid for the meds,
                      >went home and called my insurance. They said that it should only cost
                      >$15/month, and that I should have received 30 days supply. Apparantly, the
                      >pharmacist was too lazy to make the call to insurance co to get an override
                      >code as the meds were over $1000. If I had not called my insurance, I
                      >would
                      >be going every two weeks to fill my perscriptions and paying twice as much
                      >as
                      >necessary! What a way to start out the treatment!!!!!!!!!!!!!!!!!
                      >
                      >Anyway, enough complaining. I have an appointment with the nurse on
                      >Thursday, September 7 to learn how to inject, etc, and will give myself my
                      >first injection there. My appointment is for 11 am and I am a bit
                      >concerned
                      >about the sides hitting around mid day. I have been reading with interest
                      >everyone's reactions to treatment and realize that everyone is different.
                      >Of
                      >course, I am hoping to not have too many sides, but realize that I most
                      >likely will. I am a wreck, worrying about how I am going to react, etc. I
                      >will keep you all posted. I read EVERYTHING that is posted here, and it
                      >has
                      >been a TREMENDOUS help.
                      >
                      >Ciao, Lora

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                    • claudine intexas
                      ... Dear Lora, You really shouldn t take ibuprofen anyway, especially on a regular basis since there have been cases of it causing flare-ups of hepatitis in
                      Message 10 of 11 , Sep 2, 2000
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                        --- Lorad8@... wrote:
                        >
                        > It seems that most everyone recommends Ibuprofin for
                        > the muscle aches and
                        > pains. I am on a blood thinner (coumadin) and
                        > cannot take anti-inflamatory
                        > drugs. Any one have a good alternative for me????

                        Dear Lora,
                        You really shouldn't take ibuprofen anyway,
                        especially on a regular basis since there have been
                        cases of it causing flare-ups of hepatitis in people
                        with hepatitis C.
                        Try Tylenol. You can safely take up to 3 grams
                        daily. (2 extra-strength every 8 hours.) If that
                        doesn't work ask your doctor for Vicodin. That seems
                        to work real well, especially for the headaches
                        associated with treatment.
                        Good luck!

                        =====
                        Claudine
                        claudinecrews@...

                        __________________________________________________
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                      • Lorad8@aol.com
                        Pat, yes, the biopsy showed fibrosis. There was scarring and also, and the whole biopsy showed possible cirhosis. I feel that I need to be doing SOMETHING,
                        Message 11 of 11 , Sep 3, 2000
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                          Pat, yes, the biopsy showed fibrosis. There was scarring and also, and the
                          whole biopsy showed possible cirhosis. I feel that I need to be doing
                          SOMETHING, especially since I am currently unemployed. Now seemed like the
                          perfect time--if there EVER is a perfect time:)
                          staying positive, lora
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