Thursday, October 18, 2012


Today I started a new medication called Gilenya.  This will be my 4th disease modifying medication (but who's counting?) and the cool part is that THIS one does not involve any needles.  As a bonus, the pill is a wonderful size that I can manage to swallow easily.  Due to significant reduction in heart rate following the first dose, the FDA requires that the first dose be administered at the providers office.  So I checked in this morning at 8:15, had an ECG, swallowed the pill, and was monitored with frequent vital signs for six hours.  One more ECG was done to confirm all was well and finally at 3:15 PM I was given the green light to go home.


I'm a nurse so they shouldn't bug me right?  Well I'm not too keen on them being stuck in me, THANK YOU. When I started injectables in 2004, Avonex still sent the large needles with the syringes.  I felt every bit of that needle going in and coming out.  It was better when they grew a heart and provided smaller needles but I still groaned when injection day rolled around.  Rebif has the cutest little painless needles but the medication felt like acid being injected into my skin.  Again, much groaning took place come injection day.  I welcomed the Tysabri infusions as I already knew what frequent IV infusions was like thanks to my many rounds of IV steroids.  But that was a short lived ride due to those pesky neutralizing antibodies my body started making to the drug.  Sigh.

I could write a book about the horrors of my past with each of those medications, but instead, I'll focus on my hope for this new medication.

My hope is that the most painful part of being on this medication is over and that I don't have to go through the full day of observation again.  My hope is that I won't experience uncomfortable side effects as before.  My hope is that this medication will halt the disease progression.  And my guarded hope is that it will give me some restoration.

My little girl is so cute.  She sees a picture from more than a few years ago and excitedly exclaims, "look mommy, you're standing!".  Yes, I say, do you remember when I could stand?  Do you remember when I could walk?  "No," she says softly, "but someday your legs will work again.".  Hmmm.  You think so, huh?  "Yes, don't worry mommy.".  From the mouths of babes!

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