Sunday, June 9, 2013

Is copaxone making me worse?

I know that it can take 6 months or more for your body to begin to respond to Copaxone.  I know that it isn't going to make me better and that the best case scenario is that it will reduce my relapses by 33%.  What I didn't expect though, was to get worse.

I started injecting daily at the beginning of March.  I had a relapse in April and am now deep into yet another one.  When I started not feeling well 2 years ago I would be "off" for a couple of weeks and then almost normal for maybe 3 months.  My doctor said I was having more relapses than average.  He said I needed to start a DMD right away.  What I don't completely understand is what this means.  I went into a pretty bad relapse in February, started Copaxone, and then had 2 more only 5 weeks apart.  It seems like since this all started I'm just getting worse and worse and since starting the drugs they are barely separated by the mandatory month in between.

What does it mean if my relapses are coming more and more often.  They seem to include a new symptom with each one too, which is also very frightening.  I read that it is normal, on average, to have 1 relapse per year,  at this rate I could have about 9 this year alone.  Does this mean I am going to get worse quickly?  Does this mean I will probably lose more mobility sooner than average?  Does this mean I will transition to secondary anytime? 

I look for answers to this but they are vague.  What I have read is that every disease course is different for everyone so there's no clear way to know.  I have seen studies that show that the more relapses you have in the first 2 years after diagnosis the sooner you will have more advanced disability but then it always follows with 'this is not the case for everyone'.

I want another MRI, the last one on my brain was last August.  At that point it showed one new lesion since 6 months before that (I have over 14 total).  I had a spinal MRI in November which showed a couple of lesions there as well.  With having had 5 relapses since last August I wonder how many new lesions are there?  Apparently you can develop lesions even without a marked attack so it could be a lot.  Would this add to atrophy?  He already said that was measurable in me and was another reason to start DMD sooner than later.

As I type this I see that I already know half the answers here.  I know it's not great news that I'm having so many relapses.  I know that I won't know how this is going to progress until it actually happens.  What I don't know is if starting these drugs has actually triggered something that is making things even worse?  Does anyone know if this is possible?  I would really appreciate any comments or feedback from people who are taking or have taken Copaxone on this one.

Talk soon

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