EoE and Hypersensitivity
Alright EoE community- here is a ton of info for everyone as you may have gone through some of what I am.
I’m in the US and had lost faith in my doctors being able to treat me after a year of being bounced from doc to doc. In February I was scoped. Two strictures and tested positive for EOE with a count of 40 in my lower esophagus. I was given multiple prescriptions that all did different things, and told to go on 6FED (was on for 6 weeks). My doctors didn’t really know how to treat EoE so they threw everything at it.
I was losing weight rapidly as I could barely get food down since 6fed eliminates so many options that help keep weight on 185lbs to 144lbs. Right at this time I started on Dupixent. Then it became harder to swallow liquid. I made a decision to go to Mayo Clinic in Minnesota. They were happy to see me given that EoE is still pretty rare. I was able to get 3 shots of Dupixent in prior to my testing.
I had multiple tests done- manometry, barium swallow, endoscopy with endoscopy with endoscopy flip, biopsies, multiple blood tests.
They determined that I’ve had severe acid reflux (over felt heartburn until recently) which in turn caused EoE, which then caused visceral hypersensitivity of my nerves- meaning my body is telling my mind that it’s in danger whenever I was eating anything.
My treatment schedule is voquezna for acid, stay on Dupixent until the reflux is under control, and breathing/therapy for the hypersensitivity.
I’ll report back and let everyone know how this works out over the next few weeks/months.
Good luck to us all!