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    Done...(?)

    Well, after more than two years, I am done with Copaxone. For the first year and a half or so, I really had no problem with the shots - no big deal at all. Never anything more than a minor injection site reaction. At some point I began having anxiety about doing the shot.

    Not sure if anyone can relate to this comparison, but it was like going to the rifle range. The first half a dozen shots are nice and calm and steady and gradually this flinch reaction builds up and you know it's time to quit for the day. The last injection I did, there was a major stinging/burning at the site and spread through my body, along with a large area of bruising that lasted for a week or so. I really don't consider myself to be a big pansy about all this stuff, but I just felt like I'd had enough.

    The other factor is that my husband and I may be trying for our 2nd child later in the summer. We have a 2 1/2 year old now. After that, my neuro is good with having me try out Tecfidera.

    One thing that seems very interesting - since quitting the shots, my legs have not been as stiff. I was getting to the point that I'd have anxiety about walking distances in "public." My walking suddenly seems (FEELS) almost normal again. I don't know if it's just coincidence or what, but it seems noteworthy nonetheless.
    To all those who are committed to their Copax, my hat is off to you, and I am glad it is working for you.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    I was on C for about 2 yrs after being on Rebif for about 2 yrs. I was so mentally exhausted from feeling like a pin cushion all the time. DH never knew exactly where to touch me (or not) because I hurt so much. And C pushed me into really painful migraines.

    I quit injecting and have not looked back.

    This year dr told me I've moved from RRMS into SPMS. I'm ok with that information and the dr stopped "encouraging" me to start a DMD again.
    Karen

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      #3
      I felt a lot better when I got off the injectibles. I think our experiences prove that these medicines - even Copaxone - aren't "harmless" like a lot of people say.

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        #4
        This year dr told me I've moved from RRMS into SPMS. I'm ok with that information and the dr stopped "encouraging" me to start a DMD again.
        Karenkay, can you tell me more about this? What type of symptoms do you have? My neuro dx me as RRMS to get me on Copaxone, but I don't think I am typical RRMS. I don't have extreme relapses, but nothing seems to ever totally be normal, either. Just the idea of this disease exhausts me at this point. Like, is there any point in totally understanding what is going on, if it can't be treated successfully...? Cause honestly, I really DON'T understand. Who knows. Just keep on keepin' on....

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          #5
          Quit Copaxone for now

          I also did the injections for 2 1/2 years...not a problem at all with hardly any of the side effects for the first two years. Last 6 months were miserable and I was just so sore all over, everyday, that I just couldn't do it anymore.

          I told my doctor that I quit and wanted some other advice. Since I just ended up having a hip replacement, he said to wait until I was healed from that and that we would discuss either going back on the C or trying out the new oral meds.

          I have not had any "episodes" since the first one in May 2010 and I don't have a clue whether taking the C had anything to do with that. I have been off the C for 6 months and actually feel somewhat better, even with the arthritis problems. I got just about every side effect during that last 6 months and just hated it.

          I wonder if any of you have just quit taking any kind of MS meds for a long period of time and does that really increase your episodes? Do you just go back on the meds and deal with it?

          I can't really get a straight answer from any of the docs...all they will say is everyone person with MS is different and there is no way to tell what is going to happen. To me, that is the scariest dilemma...not knowing how to prepare for all the "what ifs".

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            #6
            Glad I took the time to read these posts.

            I've been on Copaxone for more than three yrs and I hate doing the injections. It's getting harder and I find myself skipping the injections, feeling guilty and wasteful with regard to unused C. What I wonder is if you went off C and then if you changed your mind, could you qualify to go back on it.

            Diane
            You cannot dream yourself into a character; you must hammer and forge yourself one.

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              #7
              Here again

              I was here in August and have since, on my own, taken a vacation from the Copaxone. I felt good, but anxiety about progression made me go back on again. It's of no use asking the neuros; they are totally sold on the DMD's. The nurses, while kind and helpful, just toe the line. I don't think they can tell you to go off it; then they could be accused of giving bad information.

              The very odd thing for me is that very shortly after starting Copaxone I developed a horrible itch on the bottom of my left foot. No rash, nothing to see by looking. I saw three doctors, no avail. The neuro says to compare it to intense pain (and it is intense). Nothing helps it and believe me I've tried every cream, lotion and prescription med possible. I have to literally get on my feet and walk till it's gone. It usually lasts at least 30 mins. Scratching does nothing.

              The weird thing is I've never had this till I started Copaxone, but....the neuro says it's not related because he has never read anything about this. I don't see how it could be anything else but C.

              I wish I could say I feel good about taking my C, but it's hard under the circumstance.

              Diane
              You cannot dream yourself into a character; you must hammer and forge yourself one.

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