Lifelong atopic eczema

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Leislei61
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Joined: Wed Aug 23, 2017 2:24 am
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by Leislei61 on Fri Sep 28, 2018 11:05 pm

Lifelong atopic eczema

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.

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Wendy Green
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Joined: Thu May 24, 2012 11:27 am
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by Wendy Green on Thu Oct 04, 2018 11:02 am

Re: Lifelong atopic eczema

Hi Leislei61

I'm so sorry to hear about the huge impact your eczema has had on your life.

I know that as a nurse you're very knowledgeable about medical treatments and it sounds like you've tried them all! However I wonder if you might benefit from taking a more holistic approach to your condition?

Diet and nutrition and stress management can all help with easing eczema. A balanced diet with plenty of fruit and vegetables, wholegrains, nuts, seeds, oily fish, dairy foods, poultry and meats will supply the vitamins, minerals, proteins and essential fatty acids needed for health skin. Taking a probiotic multivitamin such as Multibionta may also help with your allergies.

I'd also look at work stress and your work/life balance, with a view to taking regular time out to relax and unwind and enjoy life.

You sound like a very caring person, with many good points and it seems a shame that your eczema is preventing you from recognising this. In fact your eczema seems to have left you with a very negative self-image and I wonder if you might benefit from some counselling to help you regain your self-esteem?

Perhaps now is the time to focus on being as healthy and happy as you can, and who knows - your eczema and asthma may improve.

I wish you all the best for the future.
Wendy Green
Health Expert and Author

http://www.talkhealthpartnership.com/on ... _green.php

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Dr Sharon Wong
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Joined: Wed May 10, 2017 11:43 am
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by Dr Sharon Wong on Thu Oct 04, 2018 11:07 am

Re: Lifelong atopic eczema

Thank you for your query. I am sorry to hear of your ongoing difficulty in getting your eczema under control and it certainly sounds like a lot of treatments have already been tried and not worked. I am not sure when some of the stronger medications (immunosuppressants) were prescribed to you but these can certainly be re-started, particularly if you were well controlled on them previously. The most recent advance is a biologic treatment called Dupilumab which is licensed for eczema which may be an option and worth discussing with your Dermatologist in future visits.

Best of luck and I hope you manage to find something that works for you soon.
Dr Sharon Wong
Consultant Dermatologist and British Skin Foundation spokesperson
http://www.talkhealthpartnership.com/on ... n_wong.php

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Dr Giles Dunnill
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Joined: Wed May 09, 2018 1:38 pm
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by Dr Giles Dunnill on Thu Oct 04, 2018 11:17 am

Re: Lifelong atopic eczema

Your experience is not unusual. However your situation is clearly complicated by your other medical problems. This could make the choice of treatment tricky. Severe atopic eczema usually requires second or third line treatment, which means something beyond topical therapy. A useful starting point for information on this is the british association of dermatology patient info leaflet which can be accessed here http://www.bad.org.uk/for-the-public/pa ... n-leaflets This lists all the potential treatments available.

Potential treatments include ultraviolet light treatment, ciclosporin, or revisiting azathioprine or methotrexate. There is also a new biologic therapy called dupilumab which if your eczema is severe enough, you might be eligible for. You would need to access this through a specialist consultant dermatologist led service.

I hope this is helpful
Dr Giles Dunnill
Consultant Dermatologist

http://www.talkhealthpartnership.com/on ... unnill.php

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