Anyone with wide open esophagus and horrible dysphagia
Anyone with wide open esophagus and horrible dysphagia? Did dupixent help and how long until it did?
Anyone with wide open esophagus and horrible dysphagia? Did dupixent help and how long until it did?
Hello, I started dupixent 12 weeks ago and was diagnosed with 80% ineffective esophageal motility a month later. I had an esophogram prior to dupixent which also showed dysmotility. This has been the worst week so far. While I haven't really noticed a huge improvement since starting dupixent I have noticed the random day to day chest pain outside of eating has subsided for the most part but my motility just feels like its getting worse and worse with each passing day. Starting last week i feel like I can no longer burp to relieve the pressure when eating and my esophagus just feels exhausted even drinking liquids now. I was able to eat some pureed foods and soups and suddenly those feel really difficult.
Did anyone feel like they went downhill while on dupixent and then suddenly turned a corner and started getting better?
Did you have rings, furrows or look completely normal and only diagnosed via biopsy?
Did you start dupixent and did it help/ how long did it take?
For background I also have Eoe and keep in mind esophagus has visibly looked normal the entire time.
Diagnosis of Eoe endoscopy 11/2024: 49 eosinophils per hpf with only mild swallowing issues every once in awhile.
08/2025: was started on 40mg Pantoprazole twice a day and got instant globus sensation. Felt like i was being choked. Doctor told me to just deal with it and let it do its thing.
Over the holidays I started a 4fed diet where I cut out dairy, eggs, wheat and soy. Swallowing got even worse.
Right after new years I started getting horrible chest fullness anytime id eat. It felt like the food just sat there and sludged down.
02/2026 endoscopy after ppi 40mg twice a day and 4fed: 13 and 5 eosinophils per hpf
02/2026: esophogram and barium swallow showed slow motility
03/2026: food started feeling like it was filling up my back now. Anytime I'd eat id get horrible back pain and it feels like its sliding down my spine
04/15/2026: started dupixent
05/2026 motility started feeling even worse
05/2026 manometry: diagnosed with 80% ineffective esophageal motility 60 failed, 20 weak.
Endoscopy 06/2026: no Eosinophils but worsening motility and hypersensitivity. Completely normal esophagus but even applesauce feels like I'm swallowing glass.
Doctors think dupixent will help reverse the motility issue after so long. I just don't understand how since I'm technically in remission. Tested negative for other autoimmune conditions. No achalasia. Getting an MRI soon to rule out MS. I found info online about amitriptyline and visceral hypersensitivity but the doctors don't want me to start it yet until they see what the dupixent does but literally anything that has any gravy or higher consistency feels like glass. They also don't think it's hypersensitivity?
What's crazy is anytime i drink alcohol which i quit in April, i can eat anything with no issues. Pizza, burgers, bread etc. I quit drinking cuz i was starting to rely on it to eat regularly rather than just on an occasion out. But this is what makes sense to me that its hypersensitivity because alcohol numbs literally everything.
Keep in mind esophagus has visibly looked normal the entire time.
Diagnosis endoscopy 11/2024: 49 per hpf
02/2026 endoscopy after ppi and 4fed: 13 and 5
02/2026: esophogram and barium swallow showed slow motility
04/15/2026: started dupixent
05/2026 motility started feeling even worse
05/2026 manometry: 80% ineffective esophageal motility 60 failed, 20 weak.
Endoscopy 06/2026: no Eosinophils but worsening motility and hypersensitivity
Doctor said this is normal since Eosinophils can be borrowed deep within tissue? Has anyone else experienced this?
Did anyone else feel way worse before feeling better on dupixent? Tomorrow is shot number 9 and I feel like i wish I never started it but my doctor says to hold out. I feel like I'm dying. My swallowing is so much worse and I can't eat.
I was diagnosed with EOE in 11/2024 with 49 per hpf. Up until then my only symptom was random needing to double swallow. After diagnosis was put on swallowed flovent which just caused chest pain and asthma like symptoms for someone who doesn't have asthma and then omeprazole which caused other problems. Was never explained to by doctor after diagnosis how bad this could get they just said here's an inhaler and ppi come back in 3 months but we can't see you for 5 since we're booked. Lived pretty normally up until moving into a new apartment and symptoms got worse (I think my allergy is dust mites) as I've never had problems with food and issues originally started after I started working from home. Started Pantoprazole which caused horrible globus sensation for months. I did 4 fed dairy, wheat, soy, eggs and just kept getting worse. Did another scope after fighting with doctors for over year which showed my numbers were down to 15 and 5 in 2 spots but my dysphagia and chest pain was worse. Did barium swallow/esophagram which showed food hits my chest and sludges down. Started dupixent 04/15/2026, did manometry and was diagnosed with 80% ineffective esophageal motility. 60% failed, 20% weak. My doctor says the dupixent should help reverse the motility issue once inflammation is down but I feel like each week since my first shot my motility is worse. Is this like a gets worse before it gets better type thing? Next Wednesday will be shot number 8. Weird thing is I can drink alcohol which i haven't since 04/08/2026 and can eat anything. Bread, pizza, meat. So my doctor gave my hyoscyamine last week to help me eat and try to mimic the alcohol effect with it cuz it relaxes your esophagus. I do feel like day to day random chest pain is getting better but swallowing and food is getting worse. Has anyone else had this issue?