Eosinophilic esophagitis: What treatment helps you?

Posted by trcollins1948 @trcollins1948, Sep 22, 2022

I was prescribed Pulmacort for this stuff. Started taking it as prescribed despite it being not approved by Medicare or even in the USA, as I understand it. I can hardly get out of bed in the morning due to extreme soreness and pain in my shoulder and hip joints. I have a high tolerance for pain and am not a sissy. I can't work out, play golf or do just about anything. I have quit taking the stuff and hope pain will subside. Anyone out there have similar problem? By the way the price was outrageous but finally got it for $75 /month. Budesanide prescribed for dogs, cats and chickens costs about 5 bucks

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@trcollins1948, welcome. I'm tagging a few other members who live with eosinophilic esophagitis (EoE), like @tamaracaitlin @chines118 @larryh123 @fourof5zs @blackoutthesun, and who may be able to share their experiences.

Trcollins, topical steroids, like fluticasone or budesonide, are approved to treat EoE in the US. Usually a dietary therapy is tried first and possibly a proton pump inhibitor (PPI).
Here is more information from Mayo Clinic:
- Eosinophilic esophagitis: Diagnosis and Treatment https://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/diagnosis-treatment/drc-20372203

Have you tried the Six Food Elimination Diet (SFED) Treatment?

Dr. Jeffrey Alexander, a gastroenterologist at Mayo Clinic, explains.
https://youtu.be/ze6NUsL_Uag

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my son suffers from this and just visited a doctor from the UCLA EOE Center and came away disappointed their only recommendation for treatment was stretching the esophagus (which he has done many times) he’s heard of other things like swallowing cortisone (from an inhaler) and other medications and pricedures and i wonder if Mayo has more options for treatment

i’m posting this in ENT which isn’t right but surprisingly the closest

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@charleybmurphy

my son suffers from this and just visited a doctor from the UCLA EOE Center and came away disappointed their only recommendation for treatment was stretching the esophagus (which he has done many times) he’s heard of other things like swallowing cortisone (from an inhaler) and other medications and pricedures and i wonder if Mayo has more options for treatment

i’m posting this in ENT which isn’t right but surprisingly the closest

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Welcome @charleybmurphy. I moved your message to this existing discussion about EOE so you can connect with @trcollins1948 who recently asked about treatment options. See here:
- Eosinophilic esophagitis: What treatment helps you? https://connect.mayoclinic.org/discussion/eosinophilic-eosophagitis/

If you would like to seek a second opinion with Mayo Clinic experts, you can get started by submitting the online request form here: http://mayocl.in/1mtmR63

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kind of you to connect me. i looked over the mayo treatment plan and it sounds better than the UCLA plan. i’ll have to see if there’s a mayo in california (?)

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@charleybmurphy

kind of you to connect me. i looked over the mayo treatment plan and it sounds better than the UCLA plan. i’ll have to see if there’s a mayo in california (?)

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@charleybmurphy, If Mayo Clinic Arizona is not an option, the Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic and granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources. The Mayo Clinic Health Network has 2 members in California, Palomar Health in North San Diego County and NorthBay Healthcare in Solano County Fairfield, Vacaville. Here's a complete list of Network members with links to their websites:
-- https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

-- Palomar Health: https://www.palomarhealth.org/
-- NorthBay Healthcare: https://www.northbay.org/

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Thanks. Both are far from LA (though San Diego the better). Appreciate your effort.

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