Lifelong atopic eczema
Posted: Fri Sep 28, 2018 11:05 pm
I have had atopic eczema which is all over my body (mostly limbs and trunk) since I was two years old - I will be 57 on Monday. I have had every treatment known to man (I think) - I've been bandaged, microwaved, immunosuppressed (a combination of azothiaprine & methotrexate saw me clear for the longest period in my entire life) and had ACTH injections (which led me to develop adrenal suppression - but did, in fact, work).
My body image is appalling - my own mother called me ugly - and it keeps me from sleeping, going away on holiday, leads me to terrors when sleeping anywhere but my own bed (I can a} scratch is safety - which I now do I my sleep and b} know what the sheets were washed in)
It has at least contributed to the breakdown of my marriage - but I can't go into that. I see a consultant dermatologist once a year, who last time, gave me a 30g tube of protopic. I tried it - and it was like being dipped into a vat of acid. I felt he was completely dismissive.
I buy my own emollients - I like Balneum Plus for the bath, and I got 500g Balneum Plus from the dermatologist - but the GP won't put it onto repeat.
I am a long term endocrine patient. I had a craniopharyngioma "done" and radiotherapy a few years ago now. Ironically my only intact axis is my ACTH axis (although it is a bit frail). I value it highly and so am a little reticent about steroids.
I'm a true atopic - seeing a Respiratory Consultant every 8-12 weeks for my Step IV-V asthma.
Please help!!!!
I know it is complicated - but if one thing gets me down beyond anything else - it is the skin.
Thank you.
PS - I'm a nurse - and I'm off to do a dermatology study day tomorrow with GP colleagues - I'm determined no-one I care for should ever lead the life I have.
My body image is appalling - my own mother called me ugly - and it keeps me from sleeping, going away on holiday, leads me to terrors when sleeping anywhere but my own bed (I can a} scratch is safety - which I now do I my sleep and b} know what the sheets were washed in)
It has at least contributed to the breakdown of my marriage - but I can't go into that. I see a consultant dermatologist once a year, who last time, gave me a 30g tube of protopic. I tried it - and it was like being dipped into a vat of acid. I felt he was completely dismissive.
I buy my own emollients - I like Balneum Plus for the bath, and I got 500g Balneum Plus from the dermatologist - but the GP won't put it onto repeat.
I am a long term endocrine patient. I had a craniopharyngioma "done" and radiotherapy a few years ago now. Ironically my only intact axis is my ACTH axis (although it is a bit frail). I value it highly and so am a little reticent about steroids.
I'm a true atopic - seeing a Respiratory Consultant every 8-12 weeks for my Step IV-V asthma.
Please help!!!!
I know it is complicated - but if one thing gets me down beyond anything else - it is the skin.
Thank you.
PS - I'm a nurse - and I'm off to do a dermatology study day tomorrow with GP colleagues - I'm determined no-one I care for should ever lead the life I have.