Atopic Eczema/Autoimmune treatment HELP!?

[spittingpink]

Hi all, my boyfriend suffers from Atopic Eczema as a result of an autoimmune issue and is currently being treated with a selection of steroid creams, diprobase and immune suppressant drugs but the treatments arnt currently working.

He's had this since he was a teenager and in the 2 years I've known him he's had dry skin which seemed to follow the seasons, getting better or worse, but this summer its been horrendous, weeping and red, sore and making it hard for him to move (specifically his legs and food).

It took him years to get a specialist at our local hospital, but I'm not convinced they are doing the best for him. they did blood tests years ago that showed him as being allergic to dust, pollen, peanuts and wheat, but oddly in the time I've known him he's been able to eat that, this year though we've had him cut out nuts and gluten entirely and it seems to make no difference!

I told him to ask his specialist for a patch/skin prick test so we could try and figure out the route cause but the guy said no, that the drugs he was on would give a false reading and if he came off them it would be so bad that they couldnt do the test.

just feels to me these arm full of drugs (that do god knows what to the rest of his body, liver, etc...) are just a sticky plaster and without figuring out the root cause, these temporary measures will be permanent.

I want to know where to do to get the best support and help!? how do I find/contact specialists in the UK that could maybe help him better?!?!

[lovesradio]

The situation in the UK seems to be that different specialists in NHS are not very well 'joined up' so there are different views about how best to treat auto immune eczema. In the June 2014 issue of Exchange,( the quarterly magazine of the National Eczema Society) there is a very good article by Dr Andrew Wright, Consultant Dermatologist, St Luke's Hospital, Bradford on Systemic Treatments for Severe Eczema in Adults and Children.

It talks about the sort of monitoring needed and partnership working to make everything work in the interests of the patient!

You might be able to get the article online at eczema.org or try the phone helpline 0800 089 1122

Good luck

[Voula]

Hi I didn't read ur while post because I don't need to. Been there done that. When diss he start the cortisone creams? If you say longtime, then he is probably addicted to steroids and will need to stop all steroids ( cream oral or other) and allow his body to heal. Check out Facebook for some groups to support this idea and read everything on itsan.org research dr Marvin rapaport in Beverly Hills he is string supporter. The terms to look for are red skin syndrome or topical steroid withdrawal.

Your mins will be blown but it might be the answer. Don't expect derms to acknowledge this by the way. Good luck

[johnsmith]

You may be looking at the wrong thing. Every one processes food differently. We all need various types of essential foods to build the things in the body that the body needs to function.

Some of us are unable to build some of the basic building blocks and need to obtain this from our diet.

Without evening primrose tablet I suffer from eczema. It is worth investigating if you need to obtain from your food, items that help build skin oil. This will be a very much process of eating certain foods and seeing if they improve things.

When I first took evening primrose oil it took a month for it to work.

Hope this helps.

[Shell567]

Hi spittingpink,

You say that your boyfriend has developed eczema as the result of an autoimmune issue. Unfortunately, if someone with a skin condition develops their condition secondary to other conditions (including autoimmune), the skin condition often won't settle down until the underlying condition is properly treated and brought under control.

Skin prick tests for allergy are often inaccurate as the skin of patients with eczema can be incredibly sensitive. When the skin is scratched and exposed to a potential allergen, e.g wheat, any kind of reaction is often as a result of the skin being so sensitive, and not proof of allergy.

Blood tests for allergy often have a high false positive rate.

In regards to food allergy, DermNet NZ states 'If you have a strong suspicion of a food allergy, systematically eliminate foods in such a way as it will be possible to tell if the food is responsible. Eliminate one food at a time for at least one week. If the eczema clears then re-institute the food (rechallenge) and look for recurrence of the eczema. Do not rechallenge foods that cause hives or facial swelling. You should have medical supervision when doing such a food trial. Consult a registered dietician to make sure the diet remains nutritionally sound. '

Spittingpink, it does sound as if your boyfriend has already tried a wide range of treatments. Has he been offered treatments such as pimecrolimus cream, tacrolimus ointment or phototherapy? As someone who has eczema (fortunately, mine has settled down considerably), doctors sometimes seem to be a bit too obsessed with steroid creams.

Hope your boyfriend finds something that works.

Shell.

DermNet NZ: Atopic eczema. dermnetnz.org/dermatitis/at...

DermNet NZ: The causes of atopic dermatitis (eczema). dermnetnz.org/dermatitis/at...

[Hidden]

This is a good source of info on the current state of treatments available and coming

ncbi.nlm.nih.gov/pmc/articl...

I particularly look forward to dupilamab.

Also treatments for the itch such as hocl gels (just approved in the US) and the future now the nueron responsible for itch has been identified.

It's been a long time coming, but looks like medicine is starting to move on our disease.

Live in hope

As for the NHS and AD - what a shambolic mess, dermatology in general down south is dysfunctional, even the basic ability to communicate with them is broken. Very distressing, I love it when they ask, "have you been under any stress recently", how ironic, the main cause of stress in my life is my disease and trying to contact you when I need your help.

Anyway, I wish you luck and hope you find a way to help him

[tudhoe]

The first attack was in 2000 when 2 strips of eczema appeared on my lower stomach just above my right leg. I split the 2 strips into 4 separate segments and smeared 1 segment with the inside juicy part of a kiwi fruit skin. The treated segment disappeared after 2 weeks, so repeated it with another segment. It similarly disappeared. Repeated the process with 3rd and then the remaining 2 segments which similarly disappeared. In 2004 I had a severe outbreak on both shins and ankles and also agonising itching, so repeated the kiwi treatment. The first bonus was that after 10 days the itching stopped but was replaced with a smarting sensation similar to a medium stinging nettle sting. Not ideal but infinitely better than the itching. So I restarted the kiwi treatment and all the scaling subsequently disappeared.

Occasionally I get some irritation on my back which I cannot reach with the kiwi skin. However, I discovered that by blasting the area for about 1 minute with very hot air from my hair dryer the itching ceased. Hot water is nearly as effective, but a lot messier.

I have posted this information in response to other eczema sufferers and requested that they inform me if it is beneficial, but so far I have not received any confirmation as to whether it has proved beneficial to other sufferers. It is cheap, and not too messy, so I would earnestly implore you to give it a try, especially the hair dryer remedy, as it alone may give you instant relief from the itching.

Apparently there are many types of eczema, so I hope that they all can be successfully treaated. Oh, and a word of warning, that if you try it on a young child please bear in mind that I experienced a violent reaction (ie to the acidic kiwi juice), but it only lasts for a few seconds.

Heres hoping you successfully try it.

Tudhoe

09 Jul 2019