To think my Dr should investigate my severe eczema

[reducingfootprint]

I have severe eczema and Crohns - theyre both immune system related, crohns is under control with diet and anti inflammatory medication.
However - we've never managed to get my skin under control. It is red and weepy and bleeds and leaves behind thickened skin. I currently use a steroid cream on and off and use a diprobase cream at LEAST 3 times a day.
Tired of having crocodile flaky horrid skin - oh wise mumsnetters what can i do!?

Having had severe eczema as a child, you havy my utmost sympathy, Weeping, bleeding, sticking to the bed sheets, all of it. I can't really offer any useful advice, but would echo much of what the other posters have suggested. If it's a year's wait to see a dermatologist, at least make sure you''re on the list. Sometimes there are cancellations. And if you are able to see a dermatologist privately, perhaps go down that route.

One thing that made a difference to my eczema (in later life) was to use a shower filter that filters out chlorine from the shower water. You can get bath filters too. Chlorine is added to our water to kill bacteria but it can have dreadful effects on people with skin conditions, especially when you consider that we sometimes have to bath often with emollients. And using one will have no harmful effects, even if it doesn't help.

Best of luck

Have heard from friends with severe eczema that diprobase is terrible and aggravates their eczema. They use epaderm instead. Hope this is helpful.

There is also an American product a friend swears by, I'll see if I can find it

My husband has had severe eczema his whole life. He was getting some relief from methotrexate but that only took the edge off really. After 45 years his dermatologist finally sorted some allergy testing. Skin prick first and some blood serum tests. Turned out he has allergies to soya and seeds. Cutting soya out of his diet was a right faff! It's in everything! Even most shop bought bread has soy flour in. But anyway a year later and he's finally clear! I'm not sure if it's possible to get allergy testing private but honestly if it is it's worth it

Can you afford to pay for a private dermatologist?

@LaCerbiatta that would be great if you can get the name!!

@idontlikealdi sadly not but hoping to eventually

@blissfulllife thats interesting, ill try that out

@SpindleWhorl, no they wouldn't change him to Adalimumab. He was 14 at the time of starting infliximab. The infliximab has worked well for him on the whole and really gave him a life back. The skin condition was a nightmare for a few months, but as I say, his skin is mostly okay now.

Found it! Manuka honey cream

Also found it incredibly hard to get a referral. Second the suggestion that if you can afford (sorry it’s such a shit option) around £200 for a private consultation, the consultant may then add you to her/his nhs patient list if they know you are self funding.

I had this and it was especially around my eyes - all crusty and weepy.
Eventually the dermatologist referral came through. They did the skin prick allergy test (which came back with nothing) and then I was given cotton bandage type pyjamas to sleep in. I was also given a Protopic ointment which cleared it up in 10 days! 15 years later it still flares up sometimes but the protopic still works to control it. Go back to GP and let them know if it is affecting your day to day life and they may put you a little higher in the queue. The effect for me was major, it really affected my self confidence and as a result I lost 7 years of my 20s to it. Wish I had pushed the GP harder to refer my to a dermatologist sooner.

I have autoimmune severe eczema and Hashimoto's. The only thing that works for me is Protopic immunosuppressant ointment (there are two strengths). I feel your pain though (literally!). I'm currently spending a fortune getting my gut health tested to see if they find anything. The NHS is terrible for anything autoimmune, especially eczema.

I had horrendous eczema and eventually found out that it's triggered by dedly nightshade, if I eat a tomato now it flares up within minutes, so could be worth keeping a log to try and find triggers. Balmonds ointment was a game changer for me while trying to manage symptoms, best thing I have tried!

@Bywayofanupdate I second Balmonds Skin Salvation!

My son had this as a youngster so it isn’t really comparable to you, but things we noticed helped were:
Sunlight
Changing washing powder and particularly AVOIDING fairy non bio
Using less creams rather than more
Contracting a bug which gave his immune system something else to do. He caught a waterborne type of food poisoning and then his skin cleared all during the illness and never was as bad after. Although this might be a hard one to achieve and certainly not recommended but maybe having a less clean environment would help?

I remember reading about bleach baths too

A colleague had phototherapy through the nhs and it has really helped.

Your GP should be referring you to a dermatologist

I had really terrible psoriasis for 20 odd years that medication didn't help. It was bleed and weep and eas itchy and sore. I also have a GI autoimmune disease that's well controlled.

My psoriasis resolved completely when I switch to a whole foods plant based diet. Literally in 2.5 weeks it was gone and has not returned. Amazing really.

The doctor said there was a one-year wait to see a dermatologist, but have they actually referred you to see one or not?

Sometimes GPs say there's a really long waiting list in the hope that you won't insist, so they don't have to bother referring you.

I cannot recommend Dr Aron enough. After 36 years of excruciating, debilitating eczema, five months in and my skin is literally the best it's ever been. Pretty much gone. Life changer.

@quinin My psoriasis resolved completely when I switch to a whole foods plant based diet. Literally in 2.5 weeks it was gone and has not returned. Amazing really.

I've had psoriasis for all of my 60yrs, have tried pretty much every combination of diet known to man and the only thing that cleared it up is methotrexate which I was given for another autoimmune disease a couple of years ago.

Get referred to a dermatologist and get tested for allergies.

I had skin testing done, a grid of different potential allergens over my back, left in place for a week. Additional potential triggers done in the same way on my upper arms. I could wash but not get the areas wet, it wasn’t the most pleasant of weeks! But it did identify my allergies, including my deodorant, shower gel and hair products. The dermatologist was hopeless at giving guidance on products to use to avoid my allergens.

At its worst my excema was bad enough to take the consultant’s breath away and led to being admitted to hospital. Conventional treatments don’t always work for me. Stress is a big trigger as well as the chemical allergens. At its worst I find a bath in seaweed extract is very soothing - sinks and looks murky but makes my skin softer.

[quote reducingfootprint]@dameofdilemma im on 25mg of methotrexate, the GP has said one year wait time to see a dermatologist !![/quote]
Any chance you could pay to go privately and skip the waiting? Once they’ve seen you they will normally continue to see you on the nhs.

What I would do in your place (what I did in fact do) was to get referred to a dietician and go on a strict exclusion diet (amnio acid shakes for the first month, then gradual reintroduction of foods one at a time) and see if you an chase out any allergies. I wont pretend it was easy but I no longer have more than a tiny bit of eczema.

@nokidshere yes I was surprised too. I have done various diets over the years - I'm gluten free but been dairy, egg, tomato, nightshades, sugar free and more at various points. I have not cut out meat before so it's possibly that.

My rosacea disappeared too, so my body clearly likes the whole foods plant based way of eating. And overall reduction in inflammation I guess.

Get on the wait list to see a dermatologist and if you can afford it pay the see one privately in the mean time. Money well spent.

Can you afford to pay privately to see a dermatologist? I know it shouldn't come to that but I've found GP's are really not good at managing eczema as aggressively as it sometimes needs to be managed.

I've had eczema all my life. Spend my teens with red raw legs from scratching, could never wear skirts etc, I've just put up with it and it got a bit better as an adult. I found it really flared up in pregnancy and was so desperate that I paid to see someone recommended in my area. It was some of the best money spent and I wish my parents had done it when I was younger. He prescribed really strong steroid cream which I now get on prescription from the GP and really explained everything, in fact I have a genetic skin disorder which no one had ever picked up on. It makes no difference to my management but explains a lot to me. I've since taken my daughter back to him as she also has eczema and it was money well spent. Consultation cost me about £150, I'm in SE and I didn't need any follow up appointments. Something to consider as I know living with eczema is miserable.