Brave? Me? Not hardly!

So here's what level of Space Cadet I can be.  The drug study I've been in for over two years now - and the original reason I began this blog - is OVER.  I'm DONE.  I've been RELEASED from the cage and returned back to the world of the uninsured.

Interesting things I learned during this include 1) study patients are treated with a whole different level of respect than the average patient, 2) others think you're brave for being a lab rat and 3) human trials are a significant time commitment.  Oh.  And 4) while I have no regrets I will never do another one.

Regarding lesson #2:  You want to know Brave, talk to someone in a Phase One trial.  Now that's Brave (notice the first letter capitalization).  Phase One and early Phase Two is when they determine if the drug is gonna kill you fast.  I was in Phase Three which for this particular drug was done in three iterations.  I was in the third iteration of the third phase. At that point I think the pharmaceutical company was just killing time until the FDA would review their request for approval.  Not every trial works the same, obviously.  I'm just talking about mine which - in case you were wondering - is the first-to-market pill to treat multiple sclerosis - Gilenya.  I'd put the trademark thingy after the name if I knew how in hell to do that but it is owned by Novartis.

Does it work?  My opinion? OH HELL YES, I haven't had an MS flare-up since I've been on it and I don't have to be stuck with a needle to deliver it and the disease is pretty stable and I'm not dead, so yayfuckingrah. 

CAN I GET AN AMEN?!

Two Week Check-up

It's been two weeks on study drug, and I had the first of several check-ups required for the first three months. It was also the first time for me to drive myself down there like a big girl. Traffic was exactly as expected and there was only one . . . no, TWO near-accidents. I can proudly report neither one was due to my driving though! Atlanta drivers, for the most part, are just assholes.

Anyway, vitals were fine. I asked to pee in a cup because I've been thinking I could be developing a UTI (love those. not) because I've been hesitating a lot. Well, my bladder hesitates a lot anyway. So the stick did have elevated white cells in it so they sent my deposit off to the lab and will call me in a few days. Meantime, lots of water and cranberry juice. Really? Duh.

The best part was this, and maybe other MSers will understand why this was so exciting. As I was leaving the building I was heading toward an unfamiliar level of the parking deck. I had my head up, looking for my car like a normal person. Unfortunately, I did not see anything notifying me there was a step down off the sidewalk. I hate that because I can't count the number of times I haven't been able to recover from an unexpected change in terrain. I shudder just thinking about it actually.

Anyway, the heel of my right foot caught the edge of the sidewalk, while my toe landed on the deck about 3" below it and guess what? I didn't freak, didn't teeter, didn't stumble, nothing! I just recovered without incident and kept walking! That was a very, very big deal and I'm still grinning!

Oops, nearly forgot why I'm here in the first place

I just noticed the calendar - well, I look at a calendar multiple times a day but today I put two and two together - and realized I have been actively taking the little experimental pills for ten whole days and haven't said a thing about them since the 17th.  Duh me.

In a nutshell, there's not a ton of stuff to talk about.  I'm happy to say that because a) if I'm on real drug I'm not having any noticeable, unpleasant side effects and b) if I'm on placebo I'm not in a flare or having any other MS-related unpleasantness.

Honestly, I don't think I'm on placebo, for a few reasons:

1.  The tingling in my hands which has been a constant since September is pretty much non-existent now.

2.  My vision is noticeably sharper and brighter, no matter how tired I may be.

3.  I am more tired than usual, which I chalk up to #4.

4. My BP and HR are about 10 points lower than usual for me, even immediately after a cig (yes, I AM trying to quit but right now I am happy with cutting back by half or greater).

All of these things are very subtle and not visible to others, but I am aware of them many times throughout every day.

In a nutshell, I just feel a little better and I am very pleased.

And the fun continues!

Got an email from my study coordinator with an updated schedule for the Fingolimod Trial:

Wanted to email you your revised schedule for study. It is as follows:
March 4 at 7:30am includes repeated testing, repeat MRI and labs (2 hours)
March 16 at 7:30 am study drug dosing, long day of observation, bring snacks, DVD’s or book to read (6-8 hours), will need driver
March 17 at 8 am study drug dosing, length of stay depends on your 1st day dosing response (2-6 hours)
March 30 at 11 am labs and vital signs (less than an hour)
April 14 at 9:30 am lung test at Piedmont at 9:30 then here for labs & EKG, then eye exam at 1:20

Now it IS a little foolish for me to add three new posts in one afternoon, but I just want to share how fast this stuff has been happening today. Pretty exciting, huh?

Into the Cage I Go

No, my name is not really Grace.  See, I am one of the klutziest people you will ever meet.  Now there are the klutzes who trip a lot, then there's me.  When I lose my footing, I will generally perform what I can only describe as Olympic-standard tumbling.  After I complete a fancy, complicated routine, after determining I haven't broken any bones and am not bleeding profusely, I will hop up, curtsy and announce, "Just Call Me Grace!"

I like reading blogs and am constantly amazed at how witty, moving and clever people are.  I always considered myself to be about as creative as a coat hanger - still do, really.  But I am getting ready to start something I think is pretty big.  In January I enter a drug study for an oral therapy to treat Multiple Sclerosis.

Having been diagnosed since 1998, I am painfully familiar with the ins and outs of this nasty thing.  The only treatments available right now involve needles.  Weekly injections, every other day injections, daily injections or monthly infusions.  I can't think of anyone other than an insulin-dependent diabetic who can relate to the sheer BOREDOM of self-injecting.  It just gets old, it really does.

A pill to treat MS has been a fantasy of mine - and so many others - for a long time.  So, I whole-heartedly agreed to join the ranks of other lab rats.  This is my journal of the events. Please come with me on this journey.