Jo’s Story

I am a struggling 39 year old with a 2 year old baby girl, a mum who is recovering from cancer both lung and breast, and my skin has gone crazy. I have had the dreaded eczema for 37 years, I have tried Chinese herbs, oil of evening primrose, light treatment, steroid creams, tablets, antihistamines of all types.

I have seen countless dermatologists some of whom quite frankly shouldn’t be working with anyone with a skin disorders. What I really hate, are dermatologists that don’t listen, that think they know everything, how can they, they don’t have it ! There have been excellent derms also,but in my area I can count one that actually touched my skin, how can someone tell by looking at you how your skin feels, sometimes I look ok, but under my clothing and make up I am dry and crusty lol. They don’t even ask to look anymore ??

Anyway, side effects of the dreaded roid cream…..

Striae, thin skin, bruising, bleeding, hump back, in basic terms I have skin like a 90 yr old, so my derm just stopped them all just like that, put me on protopic, which isn’t working, skin is dry, red, sore, itchy beyond anything I have ever experienced, I have been reading about topical steroid withdrawal, sounds like me but so does a lot of things. The only thing left is ciclosporin but derm at the time didn’t think it was needed at the moment, but three months later here I am …. Itching, creaming, itching and guess what…. Yes creaming no oil is getting in even with ointments. I don’t know whether to do the dupilumab trial . I have been offered but am worried as its still in trialstage . Oof what do I do now?

Comments are closed.

© 2005-2019 Nottingham Support Group for Carers of Children with Eczema All Rights Reserved © -- Copyright notice by Blog Copyright