Dupilumab for eczema anyone?

[Decisionsdecisions1]

Wondered if anyone is prescribed this or knows anyone who is…..I may have to transition to it (been on methotrexate successfully for years but now causing liver function issues).

Wondered how bad the eye related side effects are….ive had recurring conjunctivitis and blepharitis in the past, pre methotextrate.

Also wondered if you have to inject yourself (not sure if I can do that!)

My son has this after cyclosporine and methotrexate didn’t work - he literally went in on his 16th birthday to the hospital to sign the consent paperwork for it to be prescribed as we had to wait for him to be old enough for our ICB to pay for it.

its been life changing, he’s been on it for 18 months now and it took about 5-6 months for it to completely clear his skin, but now he doesn’t even have the scarring from years of very distressed skin.

no side effects whatsoever, just a pen injection into his stomach every 2 weeks - small fine needle like diabetics have. He had me do it for 6 months or so but now injects himself with no issue.

The injections need to be kept in the fridge, the hospital use a home delivery service that get in touch every 3 months to bring 6 pens.

worth a try for sure, it’s an awful lot more expensive than methotrexate and doesn’t knock out the rest of your immune system like they can as it’s a targeted biological medication. Incidentally, my sons asthma and horrendous hayfever have also gone - its genuinely been life changing for him being given access to this medication.

feel free to ask any questions!

Thanks this is really helpful.

Methotrexate has been life changing for me and massively improved my eczema but after eight years it's now wrecking my liver.

The main concern I had was whether it caused eye issues, has that happened for your son?

I'm under the care of a consultant dermatologist and she has suggested transitioning to a biologic.

Metho also really helped with my hayfever and the beginnings of rheumatoid arthritis.

Don't really want to move off it but may have no choice.

My daughter has been taking dupimilab for about a year and yes, it has really helped.

We use the auto injector, it's really easy and only very short, about 5mm

She's 9, and had eczema since she was around 3. The creams simply were not working

We saw a pediatric dermatologist who prescribed Dupixent, and so far, so good

For my daughter, no it hasn't caused any eye issues

Bear in mind we live in Canada - we haven't waited until she's 16

Yes, it's v.v expensive, but insurance pays

Thanks Canuckup. Thats positive.

I'd be relying on NHS for the Dupimilab - one of the criteria is that methotexate or similar is no longer an option.

@Decisionsdecisions1no eye issues for my son at all. No sense in allowing the methotrexate to cause damage when you have biologics as an option and a consultant willing to prescribe - best of luck, but I’m sure you’ll be fine

Dupilumab has changed my 10 year old’s life. Since she was a few months old she suffered with constant eczema, sometimes resulting in skin infections, one of which resulted in a hospital admission. Her sleep was disrupted, her ability to wash, swim, go to the beach and wear clothes that exposed her arms and legs were all hugely impacted. Life has changed so much for us both. She now has occasional low level flare ups and did have red eyelids a couple of times soon after starting dupilumab but these have stopped. The injections are painful but for her most definitely worth it. Good luck with your decision.