Monday, April 14, 2014

Cimzia: Alas, No.

A few months ago I wrote about a new medication we were trying for my Crohn's Disease (and all the other autoimmune diseases I'm stuck with in what my doctors call my autoimmune "package.")  It was called Cimzia ("Trust Your Gut!") and was being offered to me as a substitute for Remicade.  Remicade, you might recall, is the Gold Standard of treatment for Crohn's.  Remicade is infused in the doctor's office once every four weeks via IV, and is a monoclonal antibody that is harvested from genetically altered mice.  There is a small percentage of the population that suffers nerve damage from Remicade due to an allergic reaction.  The nerve damage takes several forms; in my case it was peripheral neuropathy.  I have a condition similar to ALS but affecting only the sensory nerves in my arms and legs.  My motor nerves are fine, so far.  Since I'm losing normal feeling, my brain tries to compensate by making up its own sensations.  Sometimes it's icy cold, or burning hot, or being jabbed by forks, or -- my favorite -- the feeling that you get standing on sharp wet rocks, but not just on the bottoms of your feet.  It's ALL OVER.  As soon as I get used to one, a new one clocks in.  It's a trial some days, I have to tell you.

My gastroenterologist has tried just about everything for me, and not much works real well.  I only got through our recent trip to London thanks to massive doses of Prednisone and lots and lots of over-the-counter anti-diarrhea medicine.  Then they came out with Cimzia.  Cimzia is essentially the same molecule as Remicade, but it is (A) completely laboratory manufactured -- no mice at all and (B) administered very differently.  I gave myself two shots every four weeks with the fancy-schmancy ergonomic pre-filled needles shown up above.  The hope was that I was reacting to the mouse origins.  We tried this for about six months.

Six months, by the way, was how long it took for me to react badly to Remicade.  And, like magic, my six-month doses of Cimzia caused a reaction too.  A pretty awful one; the neuropathy pain started at the injection sites about an hour afterwards, and spread to both arms and both legs.  The bottom line is that it wasn't the mice, it was the molecule itself, and my latest experiment in Crohn's treatment was not only unsuccessful, but spectacularly so.  And I seem to have done myself increased damage in the process.

The only treatment I haven't tried -- because I don't live anywhere near where it's offered -- is to deliberately infect myself with a form of parasitic worm normally found in pigs.  The idea is that autoimmune diseases are caused when the body attacks itself because there's nothing else for them to attack.  It's actually a "thing;" Hugh Laurie even used it on "House, M.D."

And so the adventure continues....

(So maybe THESE little guys hold the cure.  Huh.)

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