Copaxone and Me

I started using Copaxone in May of 2000. And I’m still using it.  Count it – that’s 13 years (plus) of daily injections.  Okay, so there were a few days in there that I forgot, but I did the injections almost without fail.

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I started using it before the syringes were prefilled – I was glad for that change.  I have seen other changes through the years as well.

I try to be faithful with my log, noting anything noteworthy.

I have experienced what is called “dimpling”, which means the areas that have taken the most medicine over the years are rather sunken in, appearing as dents in the body’s natural shape. After so many years, my injection sites resemble waves.  I have learned ways to do the injections that work for me and I adjust them as needed.

At my last neurology appointment, I asked my doctor about Copaxone’s effectiveness in my personal case.  He felt it wasn’t helping and gave his blessing to stop.  With guarded relief about not having to bother with it, I went through my days NOT doing injections but still thinking about whether I had done one yet each day.  The new routine of not taking it was starting to settle in.

About ten days after I had stopped, I had vision blurriness.  I responded the way I do when possibly overheated (thinking perhaps it was Uthoff’s ), but there was no improvement.  Then, I pulled a syringe from the refrigerator and “shot up”.  Within 6 hours, my vision returned to normal.  Coincidence?….I didn’t and don’t think so.  Convinced the medicine had been doing more than I or the doctor had given it credit for, I did my shot the next day and the next.

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I decided to  continue taking Copaxone.   I do now skip the most difficult day/injection site for me, but I do the injection the other six days of the week.  For now, this is what I do.

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About Climbing Downhill

Wife and mother of grown kids, in my 50's and dealing with MS, making life's moments count and trying to offer something of value to others along the way. https://climbingdownhill.wordpress.com
This entry was posted in MS/Multiple Sclerosis and tagged , , , , , , , , . Bookmark the permalink.

7 Responses to Copaxone and Me

  1. My Odd Sock says:

    Interesting read! Who knows the whats, whys & wheres of this crazy disease.
    We all make decisions and are left wondering if we made the correct one.
    Confidence & comfort are important factors in our daily fight—continue doing what works for you!

  2. Muff says:

    I used Copaxone for several years, but I stopped when I realized I was seeing no results. My PA argued for my continuing, but I didn’t. I’m so glad it worked for you, though. Every case of MS is so different from the rest, and we each need to follow our own chosen path. I just wish they’d find a cure, instead of new meds.

  3. Catherine says:

    Good for you! A trained, neuro specialist right here. Science currently is not clear on the length one should remain on DMDs. Is there a point (I was diagnosed in 2000 too) when DMDs are no longer effective? Not the case for you! 🙂 We’re holding on for the discovery to regrowth of our mylin and ultimately a cure!

  4. I’m 13 yrs out. too. I started with Rebif (I was in the study that got it FDA approved). Kept getting relapses every 3 months. I got discouraged and stopped it after two years – neuro not happy because I didn’t go on anything else.
    Only had two more relapes and then they stopped. I’m considered early SP now. I’ve thought about going on something else because MRIs show progression. But I just don’t want to rock the boat. I can handle where I’m at right now. Arrgh!
    Thanks for the post!

  5. stargzrblog says:

    Just discovered your blog, and read this particular post with great interest. I am curious exactly why your neurologist “He felt it wasn’t helping and gave his blessing to stop.” ? Was it because you were getting progressively worse, or that your MRIs were showing more lesions with time, that made him feel that the Copaxone wasn’t being effective? Or was it that your symptoms were minimal and you seemed to be in a very stable situation that made him think that you would be doing just as well without it? (I’m 48, was just diagnosed last year, and am also on Copaxone).

    • Thank you for reading. Doc and I agreed it likely wasn’t helping me because I am progressively getting worse. I believe we were both wrong. I asked questions and he replied with “Are you looking for my blessing to stop?” I then asked “What do you think?” To which he replied “Go ahead and stop.” It’s frustrating that there are no definitive answers with any of the disease modifying drugs, but my personal experience was answer enough for me to start again and continue. 48 is late to be diagnosed – do you think your symptoms are recent or has it been a long journey to diagnosis?

      • stargzrblog says:

        Thanks for replying so quickly to my questions. I’m sorry that the reason for the Doc suggesting that you stop taking C was because of worsening symptoms and not (as I had assumed/hoped) that your MS is stabilized at this point without new symptoms arising.

        In my case, the journey to diagnosis was at least 15 years (I had optic neuritis when I was 32, but neither of the 2 neurologists that I saw at that time seemed particularly concerned, neither asked to see me again in a follow up appointment, so I just assumed that the optic neuritis was thing that happens to a lot of people on occasion — like the flu — that most often doesn’t have long term implications.) But to be fair, having not been on any kind of treatment for an entire 15 years, and to still not have any noticeable disability, I’d say that my particular case of MS is a fairly benign one (well, with the exception of the harm that has been done or is in the process of being done to my eye — the details are on my blog). So whose to say, maybe it was best that I was living all those years sort of blissfully ignorant of what was really wrong with me, and was saved from 15 years of painful daily injections? In any case, thanks for your blog. I’m enjoying reading about you and getting “caught up” with your story!

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