If you're living with a chronic illness, you're in the right place.

Friday, March 30, 2018

The Long Shot

5:31 PM Posted by Tiffany Taft , , ,
I don't even know where to begin as my head is still spinning with the news I received today.  So I'm just going to put it out into the ether:

Entyvio (vedolizumab), which I started for my Crohn's disease about 6 months ago, did what no other approach has:  cleared my eosinophilic esophagitis. 

But wait, isn't Entyvio a drug for inflammatory bowel disease?  Yes.

Is Eosinophilic Esophagitis a type of inflammatory bowel disease?  Nope.

Are IBD and EoE related at all?  As far as we know today, no.  There are very few overlapping cases.

So WTF happened?

Without getting into the biomechanics of a drug that's way over my pay grade in medical understanding, my gastroenterologist had a theory that the way Entyvio works would block the cascade of eosinophils (a part of your immune system, a type of white blood cell) through it's magical way of selectively keeping my immune system from attacking my digestive tract.

She was fucking right.

Since being diagnosed with EoE in early 2016, I have never had a clear pathology report from an upper endoscopy.  There have always been eosinophils in my esophagus, the lowest being 20 per high power field (aka under the microscope) and most recent being 30 per high power field.  Elimination diet reduced the count but never got me below the cutoff of 15.  In a normal person, there are 0 eosinophils in your esophagus.

Fast forward to yesterday, when I finally and begrudgingly agreed to undergo an esophageal manometry.  A test not for the faint of heart or of strong gag reflex.  Having a few rough gos in the past with tubes up my nose and down my esophagus, I was actively avoiding this test for over a year.  The test measures how well your muscles in your esophagus work in the rhythmic way they should (i.e. peristalsis).  In EoE, peristalsis can get screwed up and I had symptoms that suggested screwed up peristalsis.

Hot.
Or "Ineffective Peristalsis" as the manometry showed.  Nothing too heinous.  My esophagus is lazy, I don't know.  It's not achalasia, which was the big rule out.

While she was in there, the doc took more biopsies to see where the EoE was.  Knowing this would happen, I cheated like an Amish teen on Rumspringa and ate all the things I shouldn't eat for the past month.  I had real bread.  And soy lattes from Starbucks.  And peanut butter.  And almonds.  And beer.  All. The. Things. 

And it was a magical month.  A month where I noticed something odd:  the usual horrible burning in my esophagus when I'd cheat in the past didn't happen nearly as often or as intensely.  However, I'm so cynical at this point with my health I chalked it up to me imagining things. But my mind went to the "what if" of the Entyvio hypothesis. 

GI doc:  "Your biopsies are clear."
Me:  "Wait, clear?  As in zero eosinophils"
GI doc:  "Correct"
Me:  "Was it..."
GI doc:  "The Entyvio, it has to have been."
Me:  "Does this mean I can go off the diet?"
GI doc:  "Slow your roll, Taft. But you can loosen it up a bit."

This is huge news for me.  It could be huge news for people with EoE.  I'm a single case, but the long shot theory my GI doc posited last fall seems to have landed true. Could Entyvio be a treatment for patients with EoE, which currently has zero FDA approved drugs?  A 2015 article suggests that it could work in EoE, but it hasn't been investigated to my knowledge.

Maybe a long shot, but maybe not.

--T2