Thursday, June 28, 2012

We Are Writing To Inform You...

....that everything you ever thought about your disease is all an illusion and in your head.

Or, to be more accurate.."that you were randomized into the Placebo arm of the Protege study."


The rashes.  Probably due to the Picc line.  The nausea, the mild fevers, the anxiety, the insulin needs changing...completely unrelated.  Every day my temp went up! (They checked me every 15 minutes after the infusion, for an hour.)  I guess it was just me hoping for an effect, or maybe I just have a higher body temp at that time of day. (I don't even know if that's a thing.)

It makes sense. then, why I thought the first infusion helped so much but the second one did nothing.  My insulin needs dropped due to standard honeymooning.  It also explains why they had people drop their Lantus from 28 to 6, and I never got anywhere near that benefit.  I thought it was because I started with a lower dose.

But the honeymooning for 2 years?  That was just....normal?  Placebo effect?  Luck?

The silver lining in this cloud of "I left my family for weeks at a time for nothing." is that if the drug turns out to be toxic, I'm good!  No, that's not actually a silver lining, because I do not wish drug toxicity on anyone.  The real silver lining is that now I may be eligible for another study in the future.  That is, assuming they study anybody that's not in the realm of newly diagnosed.

Now I'm even madder that they stopped the studies on the drug.  I have joined the ranks of diabetics who could have been helped by this drug but aren't going to be because drug companies suck.

I wonder what else is an illusion........

1 comment:

  1. Hi,

    I was wondering if you accepted any guest posting on your site. I couldn’t manage to find your email on the site. If you could get a hold of me at, I would greatly appreciate it!