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  1. About EOS Diseases
  2. Frequently Asked Questions

Community FAQ's

Every year we survey our patient and carer community to understand the questions you would like answered. 

Together with our fellow global patient advocates, we present the most frequently asked questions FAQs to leading researchers and clinicians at the Consortium of Eosinophilic Gastrointestinal Disease Researchers CEGIR.

We are delighted to share their responses provided to you as a summary of the latest information available.

EOS Network is proud to partner with CEGIR and we are thankful for their dedication to EGID research.

Help us learn more about EGID's Donate 

What Treatment Guidelines Exist For Women With EoE During Pregnancy?

CEGIR answers the patient's questions about having EoE and being pregnant. This period raises many questions, from how medications and diet will affect the baby to what will happen to the EoE symptoms during pregnancy.

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Limited Studies Suggest:

  • The risk to a mother and her baby is not increased in pregnant women on or off EoE-specific medications.
  • EoE symptoms may improve (56%), worsen (20%), or stay the same (24%) during pregnancy.
  • Changes in EoE symptoms revert to pre-pregnancy levels in most patients.

Treatment Options During Pregnancy

EoE medications considered safe in pregnancy include swallowed topical corticosteroids (budesonide) and proton pump inhibitors. 

Diet elimination during pregnancy is best co-managed with a dietitian with experience in EoE to ensure adequate nutrition.

Management of EoE During Pregnancy

Management of EoE during pregnancy should be individualised using a shared decision-making approach between the patient and her physicians.

  • Patients with active disease at the beginning of pregnancy may continue treatment.
  • Patients with inactive disease may continue treatment or consider stopping treatment with close monitoring.

Future studies are needed to answer questions about EoE management in pregnancy.


Information is provided by The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Learn more about CEGIRs work


Donate today for a brighter tomorrow

Last updated 21/06/23 ©EOS Network 2023 All rights reserved

Published: 21st June, 2023

Updated: 30th July, 2024

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What is the role of the microbiome in EGIDs?

CEGIR explains how an imbalance in the microbiome is associated with allergic diseases such as asthma and eczema and how it's linked to eosinophilic gastrointestinal diseases (EGIDs).

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The microbiome consists of the trillions of bacteria, fungi, viruses, and other microorganisms that live on and within us. An imbalance in the microbiome, called dysbiosis, is associated with allergic diseases such as asthma and eczema.

Early-life exposures affecting the microbiome are associated with eosinophilic oesophagitis (EoE), such as antibiotic use, Caesarean delivery, and preterm delivery. Previous studies of the microbiome in EGIDs have primarily focused on the bacteria present in EoE.

The healthy oesophagus has a unique microbiome with increased numbers of gram-positive bacteria from the phylum Firmicutes. Studies in mice show the unique oesophageal microenvironment dictates the oesophageal microbiome.

Is EoE Associated With Changes in Bacteria in Oesophagus?

EoE may be associated with increased numbers of bacteria in the oesophagus. Gram-negative bacteria (e.g., Prevotella, Neisseria, Haemophilus species) may be increased in the oesophagus of patients with EoE.

The stool microbiome is not a good non-invasive test for EoE because, so far, researchers have not observed any differences in the stool microbiome of patients with EoE compared to patients without EoE.

Additional studies are needed to determine if changing the microbiome (e.g., probiotics) can be used to prevent or treat EGIDs.


Information is provided by The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Learn more about CEGIRs work


Donate today for a brighter tomorrow

Last updated 21/06/23 ©EOS Network 2023 All rights reserved

Published: 17th July, 2023

Updated: 30th July, 2024

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Can EoE cause chronic fatigue even when it is in remission?

CEGIR discusses chronic fatigue among EoE patients including in remission.

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Fatigue is common in individuals with Eosinophilic Oesophagitis (EoE).

The underlying mechanisms connecting fatigue and EoE are unclear; however, patients with EoE may be at risk for nutritional deficiencies, medication side effects, and sleep disruption.

Patients with EoE may also experience feelings of depression, anxiety, and isolation, which can contribute to fatigue.

There is limited data on fatigue in well-controlled EoE.


Information is provided by The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Learn more about CEGIRs work


Donate today for a brighter tomorrow

Last updated 21/06/23 ©EOS Network 2023 All rights reserved

Published: 28th July, 2023

Updated: 31st July, 2024

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What treatments are in pipeline for EoE?

Learn more about treatments that are going through investigations and trials for treating EoE. Answers CEGIR.

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Eosinophilic Oesophagitis is a lifelong disease affecting the oesophagus, the tube connecting the mouth and stomach. Too many eosinophils, a type of white blood cell, in the oesophagus, causes inflammation, making swallowing difficult.

Although this condition has no cure, proper therapy can help manage symptoms. However, finding the right therapy can be challenging due to the lack of licensed treatment options available.

In 2018, Jorveza Budesonide oral dissolvable tablet was the first EoE treatment approved for use in Europe and has since been approved in Australia and Canada

In May of 2022, the FDA approved its first USA treatment for eosinophilic esophagitis, a biological agent called Dupilumab and has since been approved in the EU. It is used to suppress the allergic arm of the immune system and treat patients with EoE that is mainly moderate to severe.

Access to these treatments depends on your age, location and other factors, currently leaving many sufferers still with off-label medications that are designed for other conditions such as asthma.

In this FAQ CEGIR provides information on potential EoE treatment options currently undergoing investigation. If proven to be both effective and safe, they may become viable treatment options in the future.

What Treatments For EoE Are Being Investigated

Multiple treatments for EoE are being investigated at different phases of the clinical trial approval process.​

Dupilumab (anti-IL-4r𝛼), phase III (1-11 yrs)​

  • Monoclonal antibody that binds to the IL-4 receptor 𝛼-subunit inhibiting signalling of IL-4 and IL-13, two cytokines that play a critical role in allergic inflammation.​

  • FDA-approved for atopic dermatitis (ages 6+ mths), moderate-to-severe asthma (eosinophilic or oral steroid-dependent, ages 6+ yrs), chronic rhinosinusitis (ages 18+ yrs), eosinophilic oesophagitis (EoE) (ages 12+ yrs and weighing ≥ 40 kg), prurigo nodularis (ages 18+ yrs)​

Cendakimab (anti-IL-13) – phase III (12-75 yrs)​

  • Monoclonal antibody that binds to and neutralizes IL-13, a cytokine that plays a key role in EoE.​

Tezepelumab (anti-TLSP) – phase III (12-80 yrs)​

  • Monoclonal antibody that targets thymic stromal lymphopoietin (TSLP), a cytokine released by the epithelium that plays an important role in starting allergic inflammation.​

  • FDA-approved for add-on maintenance treatment for severe asthma (ages 12+ yrs)​

Lirentelimab (anti-Siglec-8) – phase II/III (12-80 yrs)​

  • Monoclonal antibody that binds to the inhibitory receptor Siglec-8, causing eosinophil death and inhibiting mast cells.​

Etrasimod (SP1R modulator) – phase II (18-65 yrs)​

  • Small molecule that modulates the sphingosine-1-phosphate receptor and inhibits trafficking of lymphocytes from the lymph nodes into the blood.



Information is provided by The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Learn more about CEGIRs work


Donate today for a brighter tomorrow

Last updated 21/09/23 ©EOS Network 2023 All rights reserved

​

Published: 19th September, 2023

Updated: 9th September, 2025

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