Life with MS & EDS

October 10, 2009

Candidate for MS Drug Trial

Filed under: Uncategorized — by mseds @ 2:27 pm
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I was reading my local MS chapter’s monthly newsletter last week and a blurb about a MS drug trial caught my attention.  Dr. Specialist is one of the people involved in the research and it focuses on Copaxone.  It sounded interesting, so I called the research coordinator last week and it sounds like I’m potentially a good candidate for the study.

The study is based around the theory that MS symptoms decrease while pregnant.  No, I’m certainly not going to get pregnant again!  It’s a study that involves pairing Copaxone with either oral hormones or a placebo to see if relapses decrease.

After chatting with the point of contact I fit all of the things they are looking for, except there’s one problem.  I have a Mirena IUD.  I LOVE my Mirena!  It was inserted a little over 4 years ago and I have had very few periods since then and they’ve all been really light.  During my last OB-GYN visit we already discussed replacing it in March, which is about 6 months earlier than called for.  I don’t want to wait until the 5 year expiration date and find out that it doesn’t quite last that long.

So, here’s the problem.  The Mirena releases a hormone.  This would interfere with the study.  I certainly don’t want to get pregnant again, so I need to have some kind of birth control.  I refuse to use condoms.  They are fine when not married, but I was thrilled to get rid of them.  Going back on the pill isn’t an option either.  This leaves me investigating other alternatives.

I did a quick Google search, of course, and came upon another IUD, the ParaGard.  It’s a copper IUD and doesn’t have any hormones.  I know nothing about it beyond that, so I need to do some more research to see if that’s something I want to try.  I suppose there are other options out there to consider, too.

I was scheduled for my 6 month brain and spine MRI on Monday.  Since the study includes brain MRIs (which would save me my co-pay), I decided to only have my spine looked at this week.  That’s  where all of my activity is, so I’d like to know what’s going on there.  If there’s activity, then I may not get to stay on the Copaxone anyway and that would rule out the study.  While I’m down there I’m going to stop by to talk with Dr. Specialist to see what she thinks.  The point of contact is going to set me up with a time to talk with the OB-GYN that is part of this effort.

I think it’s interesting that they only look at the brain.  I know it’s more costly to do both brain and spine MRIs, but it seems that a study like this should look at both.  If I’d have had my spine checked earlier, I certainly would have had an MS diagnosis years earlier.  I can’t emphasize this enough — if you have MS symptoms, ensure to get both a brain and spine MRI!!  Just because the brain is clear or displays little activity doesn’t mean it’s not showing on the spine.

I’m looking forward to hearing what they all have to say.  I’m not usually one to go out on a limb to try things like this, but I love that I’d stay on Copaxone.  Most of the studies I read about recently involve getting some kind of placebo rather than a proven drug as the comparison.  Going without some kind of treatment at this point isn’t something I’m willing to consider.

Has anyone participated in any studies?  I’d love any stories or experiences you could share.

Also, if someone out there has a favorite non-hormonal birth control, I need some suggestions!

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