Biologics for severe eczema

[yellowbaby]

Does anyone know anywhere in the South East/ London that privately prescribed biologics like dupilumab for children under 18?

DD is really struggling with mobility, mental health and pain has been referred for these on the NHS but as she is so close to 18 they are saying she may as well wait till she is 18 and can have them at our local hospital. Other people I’ve contacted can't treat under 18.

it’s a catch 22 and I’m scared she is on the verge of dropping out of college.

Sorry to hear that, when is she 18? The costs are eye watering, I’m on adulibmumab for a type of joint disease caused by psoriasis, thankfully via the NHS, but the cost is around £2k a month

Thank you. She’s 18 in about 2 months but I’m really scared what it will do to her mentally when i tell her the referral has been rejected (trying to come up with a plan b before then). I’ve also contacted the consultant who referred us to see if they can do anything.

Is this a paeds consultant dermatologist? Are they putting her forward to adult dermatology? If so when would she see the dermatologist next? Just wondering, it takes a little while to go through the system with the ‘counselling’ first (ie the nurse giving you details) then it may need to go to the expensive treatment board (not sure what it’s called but my consultant had to send my details to this board for approval), this can all take many weeks, by this time she’ll be 18.
good luck with everything

I can’t help with the bureaucracy. Just wanted to wish you good luck. I live in terror of something happening to my approval. I don’t know how long I will last if I am forced to stop taking my biologic. I kept going by telling myself I needed to give the doctors time. For me, I told myself I had to get my own daughter launched into adulthood. That was a very long goal. I was part of the initial wave of prescriptions after the drugs were approved so it was a long time ago and she is looking at universities now.

I suggest your daughter set herself a similar goal. Something in her life worth having or doing in the future. Something worth fighting for.

She's nearly 18. You need to be honest with her - it's not a no, it's a 'not yet'.

If she does drop out of college this year because she is struggling with what is a very tough disease, then talk to the college. They usually can get 3 years of funding in the post16 world -so if it takes longer, it just takes longer.

That would give her some space to get it under control so that she can go back to college well.

Thank you all for your comments. My understanding was that if her referral was approved she would start treatment 3 weeks later so still very close to 18 but mentally such a huge difference to her. I’ve been in touch with the consultant again and emphasised how bad she is and waiting to hear if there is anything else we can do.

Sorry if it’s a silly question, but has she tried going dairy-free? My severe eczema disappeared when I went dairy-free at age 40.

I've no idea about the referral etc but can confirm that dupimilab is amazing for eczema

Same here, cut out dairy completely and reduced sugar/sweeteners for a three months, didnt really think it would have much effect but massive improvement. I stuck to it and am completely eczema free now and not missing the dairy now Im used to it.

On the diet front, my doctor’s had me trial several things. The worst was going strict gluten free. None of them made a difference. What did help was proper allergy testing.

It is unpleasant, mostly because you have to be medication free for 2 weeks, but it did help. If you think that is something that might help, especially patch testing, get it done now, before she has to stop dupixent to get it done.

My dd has been on methotrexate since she was 12. Life changing for her.