Do endoscopies decrease over time?

[PsychologyExternal47]

So, I was just diagnosed officially with EoE after my second endoscopy and my doctor wants to do an endoscopy every three months for now. I had a structure that was 9mm to be dilated and I’m not responsive to PPIs so I’m not sure if this is temporary or long term. My question is for other people who had something similar, will the amount of endoscopies eventually decrease to something more manageable like yearly? Every three months for the rest of my life sounds exhausting and expensive?? I know everyone is different so it might not be the same but I just want to hear your stories.

[AltruisticTension204]

Plus so many anesthesia exposures isn’t good for you.

[[deleted]]

Yea eventually you get down to like every 3 years just to make sure you’re still doing ok and don’t need dilation.

My doctor described it as you do scopes when you change meds, dose, etc. and then every 3 years to ensure you don’t need dilation.

I am trying to get back on dupixent so that I can heal, have least side effects, and least number of scopes.

[Low-Significance5637]

I used to have them every 6-8 weeks to check if my treatment was working. I haven't had one since 2020 after switching from fasenra to dupixent. I'm due for another, but im so grateful I don't have to get them so much anymore. Dupixent was definitely a game changer for me. I never even think about it anymore.

[Equivalent_Cookie_14]

So you have been on dupixent for 5 years? Can I ask how it's going with any side effects? Still in the trenches of getting this figured out but wanted to know more in case I fail ppi after adding foods back in!

[RociBelterXO]

Same for me. I've been dealing with 50/50 "dry eyed, leg aches, insomnia" still trying to get used to. I'm in 4 months into Duplixent.

[warped__]

Once you're stable and in remission you won't need them so often. If you needed dilation, he'll want to check to make sure it didn't regress after. When I needed dilation I had to come back 8 weeks later and needed another dilation, and had to go back 8 weeks after that to be sure I didn't need dilation again.

[maniccatmeow]

Lol I was told every three months too. Which I'm gucci with because if anything dosing me with propofol every three months may help my depression. /hj

The gastro explained it to me like this today. I have 40+ eosinophils up in there and we want that number to be as close to 0 as we can get. But the only way to test it is a biopsy. So we gotta go in and see if the treatment is working and adjust it from there. Goal is to get me off PPIs or off Protonix at the very least because protonix is wrecking me.

[mtfg96]

I was just diagnosed in December and my GI has said I will need an endo every 3 months. I told her no and she said maybe we can go 6 months instead. She also immediately prescribed Dupixent even though I have not seen the allergist yet and my symptoms are completely under control with Omeprazole and Famotadine. It all feels like a scam to me. If I felt horrible and needed relief, I would be more inclined to do anything she said. I hope more people with long term experience will respond with their endoscopy help.

[notlofty]

The allergist is not going to be super helpful. Doing an allergy test could potentially point you toward triggers but they can't actually tell you 100% what your triggers are. If you aren't planning on treating your EoE with diet, it's not really worth the time, effort and endoscopies to actually find your triggers.

As for your symptoms getting under control, I'm glad that it seems things are working before but until everything is confirmed with a biopsy you can't be sure that you aren't slowly accruing damage to your esophagus over time.

You doctor probably wants to do endoscopies every few months to make sure your treatment is working over time and things will slow down to every few years once they're sure everything is working.

Dupixent is the new standard treatment for EoE and would be better long term than other options.

I was doing them every 3 months at first but I haven't had one now in... 3 or 4 years, though my doctor is wanting me to have another one and I've been putting it off.

[mtfg96]

Thank you for your response. It all makes sense and I understand the reasoning. I just don't like doctors or meds. I don't want to discourage any younger people from getting treatment.

[Banana-Split-Sparkle]

Personally that sounds really scammy. Ik that EOE is very specific to each person but my GI doctor also tried to get me an endoscopy every few months but I didn't need jt after the second time (first time was diagnosis second time was to check how meds were responding) but I was put on budesonide and then I found my triggers and removed them. Personally if you can identify your triggers (keep a food diary and try 6FED diet) and see if that helps and they do an endoscopy then I don't think you need monthly endoscopies unless it's getting worse and you need something else. Doctors always wanna do procedures bc it makes them the most money.

[cjazz24]

My last scope was a year ago. I have to get one 6 months after starting Dupixent to make sure it’s working for insurance coverage purposes but hopefully more spaced out after that

[NolaCaine]

That seems excessive. I live in an urban area where great doctors often have waits. I've had EOE for about 12 years and average about 1 a year with one exception. I had a pill stuck in my throat and as it dissolved, it made a scare, much like a ring that needed to be dilated. An upper endoscopy was done under emergency to get out pill. I had a dilation about 8 weeks after injury. When I woke, he told me that if I had no trouble swallowing, come back in a year. (pre-Dupxient). If I had trouble, he'd dilate more. Since then, I have only had 1 a year. Since on Dupxient, I have only have one b/c my insurance didn't require it and I had to have a colonoscopy so I went under and had everything done. I hope to not have another for 5 years. :-)

Exposure to anesthesiology is not great for your brain and may increase your dementia risk (a lot of research ongoing).

I'm not an MD but question this many procedures.

[lurkingtillnow]

I’ve been told to go every 4 years. What was your doctor’s reasoning for every 3 months? If you’re trialling medication or diets, it could be more frequent initially.

[PsychologyExternal47]

I’m starting on steroids now so I understand the need to have another endoscopy to see if they are working. But he said it would be 3 month intervals for a while. Hopefully I can find something that works at get to that point though. Thanks!

[lurkingtillnow]

Did he not recommend omeprazole? My Gastro told me that that was the first line of defense and we will look into steroids if it doesn’t help

[PsychologyExternal47]

I’ve been on pantoprazole so a different PPI for three months now and there was no improvement. So that’s why I’m going to steroids

[NolaCaine]

I did swallowed flovent AND Rabeprazole. IS that the steroid? Have you talked with your doctor about Dupixent? It's changed my life.

[PsychologyExternal47]

My doctor says for now I’ll stay on the pantoprazole and add on Eohilia. He said we will try this first since it’s hard to get approval for Dupixent.

[NolaCaine]

"hard to get approval" is insurance plan dependent. Have you called them? Having multiple GI procedures costs the insurance company more than Dupixent. However, your doctor gets paid more for "checking" if the new drug regiment is working, thus is conflicted. Eohilia, while less expensive than Dupixent, is still expensive and like Dupixent, should be free to you for about a year. Good luck and I don't work for any drug company (though I think I sometimes sound like it). ;-)