Last night, as my fellow Americans enjoyed the Independence Day festivities, I achieved a personal milestone: I took my 180th injection of Copaxone. I’ve been on this treatment now for 6 months (due to my rough start, only about 5 1/2 of those 6 months have been continuous). When I first started this journey, I would never have imagined that I would be able to write about this minor “victory” today! Most of what I read about this treatment claims that 6 months is the typical timescale needed for Copaxone to start “working”. So, what’s my life like now, compared to what it was, say, 6 months ago?
Well, for starters, the injections themselves continue to get easier and easier to give. These days, I hardly ever even feel the needle going in, and the after-burn is substantially less painful than it was during those first couple of months. I never get the baseball-sized, warm-to-the-touch lumps at the injection site like I used to get. Very seldom can I even tell, on the following day, where the injection occurred on the previous night. If you are just starting this treatment, and my description of those first couple of weeks sounds like what you are going through, trust that what everyone says really is true: just give yourself some time, and you will also see that the reactions at the injection site diminish. Just for the record, I’m now able to press that button on the autoinjector just under 2 or 3 minutes of locating the site that I want to target. Not so long ago, it took me about 30 minutes of staring at that button before I could summons the courage to press the trigger. I’ve now traveled quite a bit with Copaxone (for the record, I was able to cram 2 weeks worth of syringes into the travel kit provided by Shared Solutions!).
Many MS patients claim that after so many months on Copaxone, they see a noticeable decrease in the number of relapses they have. Here is where my experience seriously parts ways with this majority of other patients, because … I never seem to have relapses, anyway. This lack of tangible relapses still causes a lot of doubt in my mind … how will I know the drug is working, if the one obvious thing that it does — minimizing relapses — is not something that would impact me? So on this front, I’m ambivalent: I’ll assume that the drug is protecting me against future damage, but I’ll never really be able to know, for sure. And I won’t lie to you … this uncertainty, the lack of definitiveness in my diagnosis, bother me greatly.
With regards to fatigue: I admit that I am having more days in which I feel more energetic than before (yeah!). However, Copaxone, being more of a preventative drug, is not attributed to diminishing fatigue. Therefore, I’ll attribute this improvement to either the placebo effect, or perhaps I’m just randomly emerging from a fatigue-funk.
With regards to my perceived cognitive function: I still struggle for words. Doesn’t matter if I am writing, talking or even thinking to myself: the thesaurus is still my best friend. I see no improvement in this area, but things don’t seem any worse, either. But then again, my word-finding problems are, of course, all due to self-doubt and anxiety 🙂
I will be interested in comparing a future MRI to my previous ones, to see if Copaxone has reduced the size of any of the lesions, which would be concrete proof that the drug is “working”. And of course, I don’t know how much, if at all, this drug is protecting my eyes from further atrophy. I’ve got another OCT scan scheduled for the near future with the same doc that took my first one, a year ago — a good timeline against which to measure any change.
That’s all for now — have a great weekend!