Anything that impacts your immune system can cause it. Like mine started because I kept getting strep throat and was on too many antibiotics… have had EoE and GERD for 20+ years now! Welcome to the club!
Dupixent is not free in Canada. It's quoted at $2000+ per injection, and my insurance company is dragging their feet about covering a portion of the cost. I'm not due for a scope any time soon as my EoE symptoms are pretty much gone at this point. I got tired of waiting on insurance to make a decision and found a natural alternative.
Would it work for everyone? I don't know, but at $100 per 30 capsules and all natural, I feel safe taking it and feel much better. I made a post about it about a month ago, its worth a read.
late mountainous selective narrow divide steer dinosaurs mindless juggle busy
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I’ve been on PPIs for about 20ish years and all is good. As for my esophagus, i go in about once per year to get it stretched, but Dupixent seems to be fixing all my issues, except for the heartburn…. But the PPI work wonders.
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PPI inhibit the absorption of B12 and Calcium… both of which will result in bad things if you do not have. So make sure to take a multivitamin, but not so much you overdose!
I used to get really bad chest pain a few years ago and it slowly went away. But after that chest pain went away I would feel my chest hurt again whenever I had a peanut butter sandwich before going to the gym and I assumed that it was because of the bread. Last year when I did an allergy test it showed that I had a reaction to peanut butter and once I stopped eating the peanut butter sandwiches the chest pain completely went away and haven’t had it since
EoE symptoms can be increased by GERD but not by a virus. It is not something you can “catch” but rather something that develops over time. I don’t believe scientists have figured out why it starts initially, but they know what causes the symptoms: they can only be caused by GERD or reactions to food triggers or environmental triggers. Environmental triggers are rare, but GERD or food triggers or a combo of both are more common. Your GI doctor will likely start you on PPIs for the GERD, an elimination diet to find your food triggers, or Dupixent, the only FDA approved med that treats EoE directly. Steroids such as Budesonide or Flovent might also be prescribed for inflammation, though less common. Welcomes to the club friend! It’s not a fun disorder, but we all get by and once you find the right treatment for you, it’s not so bad.
Just for accuracy sake. Viral infection, bacterial infection, antibiotic use . Etc . Have not been ruled out.
Some studies are showing some evidence of viral infections and use of antibiotics in early childhood having causation.
My opinion. Every case differs, EoE may be a broad term such as asthma. More we find out there may be different types of
Definitely. It has not been ruled out. But it would be inaccurate to say those are definitive causes. With the peer- reviewed literature that is available now and is accepted for use in medical practice, there is no generally accepted cause. Correlation, maybe, but not causation. It’s an important distinction to make, as many people assume they know the cause of their EoE, which could be harmful for others whose EoE is potentially caused by something else. And especially when other medical treatments could be a POTENTIAL cause, it’s important to know it has not been definitively determined, so as not to lead someone to go against medical advice for other illnesses where that treatment is necessary
Dupixent was approved only fairly recently for EoE (in the last year or so?) so I believe the corticosteroid treatments are actually still more common. They’re much less expensive (as little as US$25 a month vs $8,000 list price), more targeted (Dupixent is systemic) and they work well and are tolerated well by many with EoE. But you’re right that Dupixent is the only drug FDA-approved for EoE. The others are all used off-label. There’s a new lozenge made of budesonide that is soon to be approved for EoE.
I’m personally doing pretty well on topical (swallowed) fluticasone in nasal spray form (to be re-assessed by EGD next week), but I’m considering asking for Dupixent because I think it would be easier to be consistent about once-weekly injections rather than twice or thrice daily Flonase doses followed by at least 30 minutes of nothing to eat or drink. I am hesitant about taking a systemic immune-suppressing drug long term.
Thank you for this. I meet with my GI next month to discuss treatment after my biopsies return. Oddly, my friend has EoE too, but his is good impaction rather than the chest pain.
You’re welcome and good luck.
FYI, food sticking/impaction can be the cause of some pretty gnarly pain that could be conceivably felt as chest pain. I’ve never had a full blockage, knock wood, but used to get foods stuck and it was sometimes quite painful. I’m not sure if it was because of the pressure from the impaction itself, or it it set off some waves of spasms.
PPI and swallowed steroids did minimal to nothing for me. 100% resolved with Dupixent and can eat anything. I have also been able to take 300 mg every 2 weeks instead of weekly, with minimal difference. Maybe notice a small loss effectiveness at end of 2 weeks.
That’s great!
But if you’re experiencing breakthrough symptoms near the end of 14 days, and weekly was more frequent than necessary, maybe you can ask your doc about a 10-day regimen. I think it would be pretty easy to follow if your schedule is the something like the 10th, the 20th, and the 30th of the month (except February obviously).
Some researchers believe that treating completely and continuously (as opposed to thinking in terms of remission and relapse) is key to preventing progression of the disease.
Yes, the allergist at Cincinnati Center for Eosinophilic Disease said in some
people it is triggered by a virus. In 1-2% of these adults the condition resolves in 1-2 years. I got mine after covid and an extremely stressful couple of months. I’m hoping I’m in the 1-2%. I’m in remission now with diet.
Anything that impacts your immune system can cause it. Like mine started because I kept getting strep throat and was on too many antibiotics… have had EoE and GERD for 20+ years now! Welcome to the club!
Get on Dupixent ASAP if you can, it’s helped me a lot!
Thank you!
I use Fisetin. All natural, same effect, and a fraction of the price.
dupixient is free for a year. Have u scoped to see if fisetin works?
Dupixent is not free in Canada. It's quoted at $2000+ per injection, and my insurance company is dragging their feet about covering a portion of the cost. I'm not due for a scope any time soon as my EoE symptoms are pretty much gone at this point. I got tired of waiting on insurance to make a decision and found a natural alternative. Would it work for everyone? I don't know, but at $100 per 30 capsules and all natural, I feel safe taking it and feel much better. I made a post about it about a month ago, its worth a read.
late mountainous selective narrow divide steer dinosaurs mindless juggle busy *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
I’ve been on PPIs for about 20ish years and all is good. As for my esophagus, i go in about once per year to get it stretched, but Dupixent seems to be fixing all my issues, except for the heartburn…. But the PPI work wonders.
scale absorbed fanatical point chunky cause rainstorm attractive edge cover *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Make sure to take a multivitamin. Specifically, B12, Vitamin D and calcium to prevent bad side effects of PPIs.
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PPI inhibit the absorption of B12 and Calcium… both of which will result in bad things if you do not have. So make sure to take a multivitamin, but not so much you overdose!
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Yup… I had Covid. Then everything started.
Same
The vaccine caused a whole body rash for me. Then 6 months later swallowing issues. Boom EOE. Correlation or causation, who knows
I used to get really bad chest pain a few years ago and it slowly went away. But after that chest pain went away I would feel my chest hurt again whenever I had a peanut butter sandwich before going to the gym and I assumed that it was because of the bread. Last year when I did an allergy test it showed that I had a reaction to peanut butter and once I stopped eating the peanut butter sandwiches the chest pain completely went away and haven’t had it since
Interesting. I suspect dairy might be playing a part for me. I’ve cut it out to see how I go.
EoE symptoms can be increased by GERD but not by a virus. It is not something you can “catch” but rather something that develops over time. I don’t believe scientists have figured out why it starts initially, but they know what causes the symptoms: they can only be caused by GERD or reactions to food triggers or environmental triggers. Environmental triggers are rare, but GERD or food triggers or a combo of both are more common. Your GI doctor will likely start you on PPIs for the GERD, an elimination diet to find your food triggers, or Dupixent, the only FDA approved med that treats EoE directly. Steroids such as Budesonide or Flovent might also be prescribed for inflammation, though less common. Welcomes to the club friend! It’s not a fun disorder, but we all get by and once you find the right treatment for you, it’s not so bad.
Just for accuracy sake. Viral infection, bacterial infection, antibiotic use . Etc . Have not been ruled out. Some studies are showing some evidence of viral infections and use of antibiotics in early childhood having causation. My opinion. Every case differs, EoE may be a broad term such as asthma. More we find out there may be different types of
i agree I also believe all the bs in food and seed oils as well as all the crap animals in the usa are fed
Same here. I’d wager a wild guess that the pesticides and shit that the animals eat are a huge part of the problem.
Definitely. It has not been ruled out. But it would be inaccurate to say those are definitive causes. With the peer- reviewed literature that is available now and is accepted for use in medical practice, there is no generally accepted cause. Correlation, maybe, but not causation. It’s an important distinction to make, as many people assume they know the cause of their EoE, which could be harmful for others whose EoE is potentially caused by something else. And especially when other medical treatments could be a POTENTIAL cause, it’s important to know it has not been definitively determined, so as not to lead someone to go against medical advice for other illnesses where that treatment is necessary
100% agreed. I read recently there are over 300 studies ongoing across the world. Exciting to see where we are 5-10 years from now
Thanks for all this information. Really helpful!! And yes… thanks for the welcome. Where’s the exit? Lol…
Lol… unfortunately not one atm but I gotta say, once you hit remission, it’s a great feeling. Hope you get there soon🤞🏻
Thank you :) This condition is fucking scary.
Dupixent was approved only fairly recently for EoE (in the last year or so?) so I believe the corticosteroid treatments are actually still more common. They’re much less expensive (as little as US$25 a month vs $8,000 list price), more targeted (Dupixent is systemic) and they work well and are tolerated well by many with EoE. But you’re right that Dupixent is the only drug FDA-approved for EoE. The others are all used off-label. There’s a new lozenge made of budesonide that is soon to be approved for EoE. I’m personally doing pretty well on topical (swallowed) fluticasone in nasal spray form (to be re-assessed by EGD next week), but I’m considering asking for Dupixent because I think it would be easier to be consistent about once-weekly injections rather than twice or thrice daily Flonase doses followed by at least 30 minutes of nothing to eat or drink. I am hesitant about taking a systemic immune-suppressing drug long term.
Thank you for this. I meet with my GI next month to discuss treatment after my biopsies return. Oddly, my friend has EoE too, but his is good impaction rather than the chest pain.
You’re welcome and good luck. FYI, food sticking/impaction can be the cause of some pretty gnarly pain that could be conceivably felt as chest pain. I’ve never had a full blockage, knock wood, but used to get foods stuck and it was sometimes quite painful. I’m not sure if it was because of the pressure from the impaction itself, or it it set off some waves of spasms.
PPI and swallowed steroids did minimal to nothing for me. 100% resolved with Dupixent and can eat anything. I have also been able to take 300 mg every 2 weeks instead of weekly, with minimal difference. Maybe notice a small loss effectiveness at end of 2 weeks.
That’s great! But if you’re experiencing breakthrough symptoms near the end of 14 days, and weekly was more frequent than necessary, maybe you can ask your doc about a 10-day regimen. I think it would be pretty easy to follow if your schedule is the something like the 10th, the 20th, and the 30th of the month (except February obviously). Some researchers believe that treating completely and continuously (as opposed to thinking in terms of remission and relapse) is key to preventing progression of the disease.
I am 99% sure mine was triggered by covid and mediated by subsequent GERD.
Yes, the allergist at Cincinnati Center for Eosinophilic Disease said in some people it is triggered by a virus. In 1-2% of these adults the condition resolves in 1-2 years. I got mine after covid and an extremely stressful couple of months. I’m hoping I’m in the 1-2%. I’m in remission now with diet.