June 04, 2011

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. 



TickledPink said...

Amen, Sistah!

I was more terrified to get OUT of the trial, it turns out, than to get INTO it in the first place.

I'd probably do it again if it was for some drug that could do for me what Fingolimod has done for many of us. (I hate calling it Gilenya. It just doesn't sound right).

Phase one would take a LOT of soul searching and having to be at my rope's end to join, for sure.

Webster said...

Sure - AMEN to you! For volunteering to be a later-stage lab rat for the rest of us. I'm happy that it has worked for you - and YAY for no needles. But Novartis is charging way too much for the drug, in my opinion.

Kim @ Stuff could... said...

Hooray for drugs :) and you for testing them. I have a friend taking Gil...? and she likes it also.

Anne P said...

Webster - sending an AMEN back your way because Novartis has totally fucked up the prices of ALL the MS therapies!

Kim - thank you for the hooray, sweetie!