Dupilumab and bronchiolitis obliterans: any feedback?

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Johann
Family member
Posted on April 10, 2026 at 07:15 PM

I wanted to open a discussion on a topic we were told about recently.

During a consultation with a pulmonologist, she mentioned Dupilumab. Even though it's not necessarily recommended for very young children, she explained that she had tested it on another patient with post-infectious bronchiolitis obliterans, with apparently very significant results.

For those who don't know, Dupilumab is a biological treatment (monoclonal antibody). From what I understood, it works by blocking certain inflammation pathways, particularly those linked to allergic reactions (IL-4 / IL-13 type). It is already used for conditions like severe eczema or asthma.

In our case, this is what's called "off-label" use, so outside the official indications.

The pulmonologist also mentioned a possible link with what they call the "atopic march" that is, an allergic background (eczema, allergies, asthma…) that could play a role in certain profiles. She notably mentioned links with allergies, like those to milk.

To be honest, it opens up possibilities, but it also raises many questions.

Has anyone here already tried Dupilumab in the context of bronchiolitis obliterans? Or had feedback from doctors on this subject?

I'm open to any experience, positive or negative. Because currently, it remains quite experimental in this context.

Thanks in advance for your feedback 🙏

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