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?!

I'm so glad I'm not the only one (some cussin' in here)

My favorite MS blogger on the planet, Jeri, posted a thought provoking brain dump the other day. She put into words something I've has issues with for quite some time.  In a nutshell:  why do so many people with MS seem to relish negativity?

Like Jeri, I was also a pretty active contributor to an MS forum.  In fact, this particular one I'm going to bitch about is where I found her, but I don't want to wander off topic...

The day of the announcement that the FDA had approved the drug I've been lab-ratting for the past 18 months (Gilenya), a friend of mine said, "Hey are you going to put that on your MS forum?"  (My forum? Where's my revenue?) Actually, I had thought about it for about a nanosecond and already decided that no I wouldn't.  I knew a discussion would immediately follow, decrying the drug as "too unknown", "too new", "too many side effects", blah, blah, blah. I was not going to be the poster that began the discussion! No surprise, someone else did.

This particular forum has a search box where one can type a keyword and get returned every. single. post. having the word in it.  I will guaran-damn-tee you, none of these naysayers did that.  If they had, they would have seen hundreds of posts, going back several years, written by folks like me and Jeri and many others who detailed our individual experiences as lab rats for Gilenya. They would have the ability to hear lots of opinions - good and bad - from patients who actually took the flipping drug.

Instead, they choose to bad-mouth it by simply reading the patient information pdf on Gilenya's web page. Well honey, have any of you read the patient information things that come with every prescription?  They often read like a horror novel (novella?).  I'm amazed that anyone would take any prescription med of any kind after reading that shit.

But we do take prescription meds, don't we?  Because we want help and relief so badly from whatever ails us, we are willing to risk (potential) side effects.

So, my message to the naysayers is this.  If you don't think a drug is right for you then don't take it, I don't give a shit.  And if questioned, simply say, "I don't think it's right for me."  But if you go on to condemn something of which you have no first-hand knowledge or experience, then do me a favor?  Shut the fuck up.