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WELCOME BACK TO MY SHOT-SPOTS, COPAXONE

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    WELCOME BACK TO MY SHOT-SPOTS, COPAXONE

    After 11 yrs of MS, and countless therapies (including not taking anything for the past 2-3 years) I am going back on 20 mg daily Copaxone.

    My first DMD was Copaxone. After a severe Relapse, I choose to switch to Tysabri (& was on it 36 months). Since 2011 I have not been on anything other than a couple oral drugs each giving me such bad side-effects I had to stop quickly halt them.

    I have not been on ANYTHING for over a year now. At my recent Neuro visit she was adamant about me being on something. She showed me my most recent MRI and kept saying "your MS is very aggressive you need to be on SOMETHING". So here I am...sigh, I hate this disease.
    Peace to all,
    LM
    RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

    #2
    Are you eligible for the 40mg three-times a week Copoxone. A lot less needles.
    Good luck.

    Comment


      #3
      TWAIN

      Originally posted by twain View Post
      Are you eligible for the 40mg three-times a week Copoxone. A lot less needles.
      Good luck.
      Thank you for your post, it was very kind. I was on the 40mg dose shot at the beginning of this year. It caused me so much discomfort at the site of injection (and other issues at site) that I threw my hands up in frustration and said "NO MORE".
      Peace to all,
      LM
      RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

      Comment


        #4
        I was on Copaxone 20 from 2008 - 2015. I'm now on Copaxone 40, and didn't have any trouble with the switch.

        But, since C40 doesn't work well for you, let me tell you what I did with C20. I had horrible site reactions in my hips, thighs and arms. Pretty tolerable reactions in my abdomen. After multiple conversations with Shared Solutions about injection tips and techniques that didn't improve things, they came out and re-trained me in the injection. Still didn't improve things; they noted that I was doing everything correctly.

        At that point, after reading in medical journals online about Copaxone every day being effective as well, I talked to my MS Specialist about doing C20 4 days per week, instead of daily. That way, I could use only 4 places in my abdomen. She approved it.

        I'd been on Betaseron for 5 years prior to Copaxone, and Copaxone, even 4 days per week was much more effective for me than Betaseron.

        Now that C40 is available, I'm glad to be able to be getting the recommended dosage. I hope that it is even more effective. I haven't had a relapse in the 18 months that I've been on it. But, I occasionally went that long on Copaxone 20, too, so it hasn't been long enough for me to know if it's better.

        But, it is possible that your doctor would OK you taking a less frequent dose of Copaxone 20, like when I took it 4 days per week. I spread it out like this:
        • Monday morning
        • Wednesday noon
        • Friday supper
        • Saturday evening

        I tried to get about 42 hours between most shots. So, it was less than once a day, but still slightly more than once every other day.

        If you don't have any sites that are better or worse than others, at least you could possibly get by with fewer injections as you rotate through all of your sites. Your doctor may be inclined to approve it if you are more likely to remain compliant to that sort of schedule, rather than becoming frustrated and going off altogether again.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          BODY Itching not injection site itch

          I have been experiencing itching on my chest/ stomach/back ~1 hr after injection. This is not injection-site itching. I have spoken with a Shared Solution Nurse and Neuro-Nurse about it. I am doing what Neuro has instructed & am taking Benadryl 1 hr before my injection. It helps some, but not completely. (Being a retired RN I know what the systemic itching means.) I am posting because I have a question for my MS-Copaxone buddies: How many of you have experienced this? I realize it is Christmas Eve and there may be fewer people on this site, so I will keep checking back with hopes that there will be replies.

          Wishing all a very blessed Christmas/Holiday.
          Peace to all,
          LM
          RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

          Comment


            #6
            Hi Fishytrout:

            Back when I was on Copaxone, I never had the kind of itching issue you're having.

            Originally posted by Fishytrout View Post
            Being a retired RN I know what the systemic itching means.
            Then you probably also know that Copaxone isn't the real issue in your situation.

            You said earlier that you've been on "countless" therapies, including not being on a med at all. Well, I've counted my therapies, and it's around 16 meds over the years (obviously, many of them were not MS-specific). I've had a lot of experience evaluating meds and risks vs. benefits, notably when all the choices were bad (and still are). My experience tells me that the only way you could have come to the position you're in now is that your past evaluations and decisions skipped some steps and criteria somewhere.

            I hope the new year brings you the opportunity to take a new look at your treatment options and come up with an optimal, workable solution you can move forward with.

            Comment


              #7
              jreagan 70,

              Thank you for your response. I am hoping others can give me their thoughts and experience.
              Peace to all,
              LM
              RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

              Comment

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