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    Stopping Copaxone therapy....

    Hi, I am pretty desperate for advice at this point in my life. I get absolutely nothing from my doctor and everything is sugar-coated on the medication websites and the National MS Society.

    SO - little background first - I'm 32. I've had MS for about 8 years. My main symptoms upon diagnosis were pretty bad double vision along with fatigue and numbness. I am also diabetic which means I cannot have steroid therapy because it really throws blood sugar out of whack. I am very much against immunosuppressive therapy and reluctantly started Copaxone when I was first diagnosed. I know (or was told) that it is the safest of all the "CRAB" drugs. I would never take Tysabri or anything like that. I also started taking Low Dose Naltrexone (LDN) soon after starting Copaxone.

    It took me a long, long time to recover from my initial flare up, almost an entire year. Maybe because I'm diabetic, things seem to take longer to heal. I haven't had any major flare ups since then which I contribute to the LDN totally. However, I still have months where I feel weaker, I experience numbness, my legs feel like they are going to give out, I can't even keep my eyes open. I hate taking copaxone - I'm on 4 insulin injections a day being diabetic alone, this just adds to it. It is painful and I have lumps and varicose veins all over my body from the copaxone. I hate it. I also don't think it is doing anything.

    **My desire is to stop taking Copaxone all together and I would ideally like advice from anyone who is taking LDN who used to take Copaxone too? Is there anyone out there? How did it go? I am nervous to stop taking it. I hate when you call to refill your prescription, they say have you missed any doses??? Like its the end of the world. They instill fear in me that I will get worse if I stop taking it. I am afraid if I stop taking it, even if I start back up again in the future, that it will cause permanent damage.

    My eyes never fully recovered. I can feel myself getting slower as time goes on. And I'm only 32, it is so depressing. I hear so many good things from people that JUST take LDN, but I've never known anyone that takes both. Are there any doctors on this forum? Can anyone advise me if this is do-able, or am I making a mistake? Has anyone done this?

    I feel like I can't live the rest of my life taking both. And no, I will absolutely never take the double-dose copaxone. I have started to try to take a little less Copaxone each time, just not pushing the syringe totally down to the bottom, but I feel like crap lately and not sure if its coincidence or not. I am really really depressed and feel hopeless and don't know what will happen in the future. Any advice would be greatly appreciated, thanks..

    #2
    I do hope someone responds to your thread. Sadly, I wouldn't know what to say. I did three months on Copaxone and just stopped. That was about a year ago. I'm supposed to begin the newer dose but it's still sitting in my refrigerator.

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      #3
      Insulin Pump

      Has your endocrinologist discussed an insulin pump with you? I have a sibling that uses one. Maybe that would help you? Hope things get better for you.

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        #4
        Whatever your reason for wanting to stop Copaxone, let me just say this:

        I was dx'd in 1999, and had one relapse/attack after another for the first year and a half after I first developed symptoms. It did not look good for me. My neuro at the time put the Primary Progressive label on me, so there were no treatment options for that.
        I changed neuros, and my new doc put me on Copaxone, and I have been using it faithfully everyday since that time.
        My disease slowed down and has now been mostly in remission for the past 10 years or so. I have some bad days, but I am still on 2 feet.

        I was able to return to work after retraining for a new career, one without a lot of the stress I had in my former job. I managed to last nearly 11 years before taking a voluntary retirement at 62 years old.

        I cannot prove that Copaxone kept me in remission all these years, but if I were a betting man, I'd say it did.
        If you have insurance that will cover the cost of Copaxone, you are one of the lucky ones. There are so many of us who don't have the means to pay for any of the expensive treatments, and so many of those people ( I know a few) are very severely disabled by this disease.

        If you have the means to fight back, then it's my opinion that you should do everything you can to slow down the progression of your MS.

        It's your choice of course.

        **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**
        Jim S.

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          #5
          Some information

          Under the medication forum, which is where this copaxone forum, is another sub-forum that sticky that discusses LDN. I am posting the link below to that subforum for you. I hope it answers your questions regarding LDN.

          You can also use the search button that is towards the upper right hand corner of the page.

          http://www.msworld.org/forum/showthr...DN-Information
          God Bless and have a good day, Mary

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