Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think my Dr should investigate my severe eczema

56 replies

reducingfootprint · 20/06/2021 21:24

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!?

OP posts:
Piemam · 20/06/2021 22:46

You have to be referred elsewhere, let an expert look at it, if after all this time it is not under control. I know there is no wonder cure but steroids don't cut it for severe eczema, and you must be so uncomfortable. Demand more. Good luck.

SpindleWhorl · 20/06/2021 22:49

When you say Dr do you mean GP? Have you seen a dermatologist yet?

whoknew23 · 20/06/2021 23:01

Have you tried changing your soap powder?

My eczema was intolerable until I finally realised my soap powder and sugar were my triggers , and stress. I had light treatment and all sorts nothing helped. I also found certain creams flared me up as well.

Waddles5 · 21/06/2021 03:11

Have you looked into allergies? I had random awful eczema like patches on my face and arms last year which turned out to be triggered by an allergic reaction to a skincare product.
I also have a friend that has been suffering with severe eczema her whole life. After my diagnosis she found an allergy specialist for herself and discovered that she's allergic to just about everything. By removing a lot of her triggers and including antihistamines into her daily routine she has been able to considerably decrease her eczema severity.

steff13 · 21/06/2021 03:58

Bleach baths?

jabbyjabjab · 21/06/2021 06:38

If your doctor has given up on you (it happens), you need another doctor, especially if this doctor isn't actually a dermatologist specialist. Get referred.

In the meantime, you need to start keeping a diary. Things to track:

  • What you've eaten (especially if you've tried something new)
  • What chemicals you've come into contact with (e.g. did you wash your hair, wash the dishes, do the laundry?)
  • How you are feeling (stress can be a trigger)
  • How your Crohn's is (other health problems can be a trigger)
  • Where in your monthly cycle you are, if you have periods
  • What medication you took and how often

It's a lot of irritating logging, but unless you track it all, it's hard to pinpoint what, if anything, is making your eczema flare up. Your new doctor will also find it helpful.

Allergy testing is a must if you haven't had it already (and as a result of the above log, you might identify some non-standard allergens to get tested for).

If your eczema is cracked and weeping all the time, chances are you are regularly getting it infected - make sure you are getting appropriate steroids for when that happens, and not just relying on your standard stuff.

You'll see conflicting advice on how often to shower/bathe - TBH, as long as you have a product that doesn't irritate your eczema (if you're really miserable, you can get stuff prescribed), there's no right answer. Do whatever you find helps make your eczema feel more bearable.

As well as using the right medication, I've found when in that state of being utterly miserable, cold compresses help relieve the pain/itching - just flannels (washed using a non-bio detergent) that you keep regularly topped up with cold water. It depends on the site of the eczema too, what you can reasonably do to keep comfortable.

FTEngineerM · 21/06/2021 06:44

Our sons is related to his diet; doctor was shit and wouldn’t refer us to dermatologist or allergist and just looked me in the eye as I cried after not sleeping for more than 45 minutes for 4 months and said nothing we can do.. have another steroid cream.

Load of crap, two days of removing dairy and he slept nearly through.

Then soya too and it completely went.

He still gets the odd stress induced flare up if he’s unwell and can’t sleep but that’s all. Totally manageable.

As PPs have said please look into diet, there’s so much linked to out diet that doctors just don’t seem to know about/recognise as something that should be referred to someone else

Ktay · 21/06/2021 06:45

I’m so sorry you are suffering like this. I’m sure you are but just to check you are using the right amount of steroid cream and keeping going with it even if you see improvement? We were told to apply daily for a week, then reduce to alternate days for a week, then a final week of 3 or 4 days apart. This guide tells you how much steroid cream you need - I was being a bit too sparing initially. Really hope you get some relief soon...

TheMotherlode · 21/06/2021 06:52

That sounds really painful OP, sorry. I have a chronic skin condition, not eczema, and found that my GPs just weren’t interested at all, for years they recommended the same useless treatment or tried to tell me to just live with it as it wasn’t life threatening.
One trip to a dermatologist however and I had a prescription for an effective treatment. I’d suggest pushing really hard for a referral. Can you afford to see a dermatologist privately if they refuse to refer?

IseeScottishhills · 21/06/2021 06:59

"Bleach baths?"
Never ever this.
I used to do dermatology (many many years ago) the biggest issue is compliance (no criticism of you) you must apply the prescribed steroid cream as prescribed by your GP until your skin is completely better not until its just slightly improved, never bath in soap but an emollient for washing in including you hair and regularly apply diprobase through the day to keep your skin moist at the very least 4 times a day. I agree never use biological soap powder.
Look on the pathway on NICE guidelines and challenge your GP if he/she is not following them. Even when I did dermatology waiting lists to see a dermatologist in an out patient clinics were very long God knows how long you'd wait now try and work with your GP.

FTEngineerM · 21/06/2021 07:02

you must apply the prescribed steroid cream as prescribed by your GP until your skin is completely better not until its just slightly improved,

Unless you find the cause it’ll keep happening. Finding and treating the cause is far more efficient for your time and health than just treating the symptoms.

natwebb79 · 21/06/2021 07:09

Oh I feel your pain, you poor thing. If you also have Crohn's there's every chance your eczema is part of an autoimmune condition. I have Hashimoto's thyroid disease and severe eczema and am being referred to an endocrinology department. In the meantime ask for Protopic ointment - it's immunosuppressant ointment and is magic for me. Steroids and other treatments do zilch. There are also other treatments coming about such as Dupilumab injections but side effects aren't great as it's early days. I really hope you get some relief soon.

Ktay · 21/06/2021 07:10

@FTEngineerM

you must apply the prescribed steroid cream as prescribed by your GP until your skin is completely better not until its just slightly improved,

Unless you find the cause it’ll keep happening. Finding and treating the cause is far more efficient for your time and health than just treating the symptoms.

Tbf, you have to do something effective about the symptoms while trying to find the cause though, it can take ages/lots of trial and error
jabbyjabjab · 21/06/2021 07:20

@natwebb79

Oh I feel your pain, you poor thing. If you also have Crohn's there's every chance your eczema is part of an autoimmune condition. I have Hashimoto's thyroid disease and severe eczema and am being referred to an endocrinology department. In the meantime ask for Protopic ointment - it's immunosuppressant ointment and is magic for me. Steroids and other treatments do zilch. There are also other treatments coming about such as Dupilumab injections but side effects aren't great as it's early days. I really hope you get some relief soon.
This is really hard to get hold of - in my experience, GPs will not prescribe tacrolimus ointment - you need to be under the care of a proper dermatologist and to have exhausted pretty much everything else before you'll get it. But as a last ditch drug, I agree, it can be pretty magical.
Londonnight · 21/06/2021 07:26

You need to be referred to a dermatologist. Are you on infliximab for your crohns? I ask because my son has crohns and when he started on infliximab 7 yrs ago he developed psoriasis due to the infusion. His skin was dreadful, very weepy and sore and flaky. He was getting constant infections behind his ears due to the infliximab.
He was sent to a dermatologist who prescribed different creams [ can't remember the names off hand ] which finally cleared things up.
He still gets flares up of this now and again, but on the whole he is so much better.

SpindleWhorl · 21/06/2021 07:58

@Londonnight, did they not try him on Adalimumab? It's a treatment for Crohn's and psoriasis. I'm on it myself. I have inflammatory arthritis too.

I have Enstilar for outbreaks of psoriasis and dermatitis (although I hardly ever get any now, just a few spots, since starting on the Adalimumab).

I find one of the real ball-aches of autoimmune conditions is having to see many different specialists, who may or may not talk to each other. It's not at all holistic or even joined up.

FTEngineerM · 21/06/2021 08:37

@Ktay yeah definitely, I’m not suggesting anyone live in hell which, quite frankly, it is

queenmeadhbh · 21/06/2021 08:39

I struggled accessing a proper treatment plan so went to GP and instead of asking for treatment said “I’m here because I am struggling to manage my eczema and it is affecting my quality of life. I keep being prescribed slightly stronger steroid cream but each time it flares Im back to square one as GPS keep prescribing a less potent steroid cream (as they should, based on guideline) to see if it works, telling me to come back for something stronger. It is affecting my sleep and exercise and mental health. At this stage would you consider a referral to dermatology?”

the GP was great and told me that there was a years wait for dermatology proper but that they ran an in house derm clinic run by a GP with a derm specialism and referred me there. Was seen within the month, he prescribed a regime of betnovate for 1-2 weeks for flares with maintenance eumovate once or twice a week. He also agreed to prescribe me steroids with anti fungal so that I had that to treat it when needed as I explained I could now tell when it had a fungal infection.

There is now a note on my file so while they won’t give me the steroids on repeat, I can just have telephone consult with a GP and ask for more of the cream and they are happy to comply as there is a note that I am following a treatment plan as recommended by a dermatologist.

Also have you been swabbed for bacterial infection? Sometimes if the steroids don’t get on top of it it is because there is an underlying infection (often staph) that needs antibiotic treatment.

sparemonitor · 21/06/2021 08:41

The bare minimum for emollients is at least 4 times a day. The more diprobase you use the less steroid you will need. Try a fortnight of using the diprobase 10 times a day.

reducingfootprint · 21/06/2021 10:24

@jabbyjabjab Done all of this and there is no link - its slightly worse in autumn with no known changes in my lifestyle

@queenmeadhbh i will try that - thanks

@Londonnight no im on azathioprine and methotrexate for it

OP posts:
BarberQueue · 21/06/2021 10:37

Could you afford to see a private dermatologist? For a couple of hundred pounds you could see someone quickly and hopefully get some relief. Also do you have a leather sofa? I had dreadful eczema and even had to take time off work with it. It turned out the sofa was the culprit!

dameofdilemma · 21/06/2021 11:56

reducing - what dosage of methotrexate are you on?
The only thing that has helped with my atopic eczema is methotrexate - but only if its a high enough dose. I'm under care of a dermatologist, after a GP referral.

Steroid creams (and I was on Dermovate), emollients, identifying allergies etc had minimal impact.

As other posters have said, do emphasise to your GP how the eczema is impacting you. If its bleeding, that sounds severe and at risk of infection.

reducingfootprint · 21/06/2021 12:41

@dameofdilemma im on 25mg of methotrexate, the GP has said one year wait time to see a dermatologist !!

OP posts:
GrimDamnFanjo · 21/06/2021 12:51

[quote reducingfootprint]@dameofdilemma im on 25mg of methotrexate, the GP has said one year wait time to see a dermatologist !![/quote]
Husband is on his second dose of methotrexate and finally has his eczema back under control after over 2 years of trying every cream under the sun and a course of light therapy.
Insist on a referral to a dermatologist. Eczema has a terrible affect on quality of life.

Januaryblue2020 · 21/06/2021 12:54

Could your eczema be steroid resistant? I had really bad face eczema and was prescribed a cream called Protopic, it worked wonders.
Equally, it could be something called discoid/nummular eczema, especially if it's weepy. This is really hard to shift (had this too!) and had to have vvv potent steroid cream on it.
Either way you probably need to see a dermatologist