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

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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 1 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 2 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 3 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 4 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 5 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 6 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 7 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 8 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 9 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 10 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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