To say some people don’t understand how bad psoriasis and eczema is?

[DanceBecauseYouCan]

Fully prepared to be told I’m being unreasonable (and I genuinely mean that!) I’m having a particularly nasty psoriasis flare up on my head right now and I’m in a bad mood because of it so maybe I’m just being unreasonable but I just wanted to get this off my chest.

I feel like not everyone understands how bad psoriasis (and eczema) can be. I’ve noticed a lot of people saying they have eczema or psoriasis when they just have a bit of dry skin, and I think most people consider the conditions to just be dry or slightly irritated skin when actually it’s awful (I know it’s a spectrum and some people have it worse than others, but not every bit of dry skin is a condition, sometimes it’s just normal). I don’t have eczema so can’t talk about that but psoriasis is an autoimmune condition and not just a reaction to soap or shampoo like some people seem to think.

I don’t talk about it or bring it up but it’s obvious and red raw at times so sometimes it does come up in conversation. The number of people that are like ‘’omg I have horrific psoriasis too, have you tried a product called t gel or Sudocream? Make sure you moisturise everyday!!!’’

I know people are trying to be helpful and sometimes simple OTC products do help, but it’s a bit frustrating after a while to have people claiming their tiny bit of dry skin is psoriasis or eczema when actually it’s just typical dry skin that’s completely normal. Im on very strong topical steroids and am under dermatology, I think it’s a bit beyond e45 and I know by now that I need to moisturise everyday!

I guess a similar comparison is probably people with ME or chronic fatigue syndrome- i have a friend with this who gets so frustrated with people telling her they have it too because they’re always so tired and reminding her of the importance to get at least 8 hours of sleep 🙄 I guess it’s sort of like that!

I know I have no way of knowing if their dry skin is just them on a good day and I’m probably not explaining this well, but does anyone else with psoriasis (or eczema) feel like this?

I agree, I'm lucky my face isn't covered in psoriasis, because the rest of my body is. I have it over my torso, legs, arm, scalp. I think the only places I dont have it are my face and feet. I get it under my breast, between my buttocks, around my vulva when its really bad. It bad at the moment. Unless I slather myself in steroids every day its there. My legs look awful. It feels horrible, bumpy and dry. I hate it. But I don't think people understand..I went to see my GP once about it, he gave me a free sample of children's E45 cream to try. Honest to god.

Meant to add, it's a bloody travesty that the NHS won't prescribe it, as it involves 'prolonged use of steroid cream'.

They were happy to prescribe me a massive tube of dermovate/betnovate/betamethasone monthly. Literally hardcore steroid creams, used twice daily.

His is a very diluted compound of steroid and antibiotic cream, and a base cream like diprabase. And as I say, two weeks in, I was down to about one application a day. Two years in, I spot treat any flares when they occur but otherwise don't use anything.

Eczema, had it so bad I was red raw for a full 2 years in my 20s. I was walking one day past Holland and Barrett and they were doing non pin prick allergy tests the next week so I took the day off work.

It showed I was allergic to dairy, orange juice and cigarette smoke. I gave up dairy that day and within a week my skin was clear. I stayed off dairy for a decade and started introducing it back a tiny amount at a time and now I'm a cheese monster.

The dermatologist a few months earlier - it's hereditary and you are stuck with it. Cheers mate. Thank goodness I'd walked past Holland and Barrett that's all I can say.

My teen dd has eczema so bad that she has to take a low dose chemotherapy to keep it relatively under control. She is disabled by it. Cannot even close her eyes fully due to the skin on her eyelids splitting so much over the years that it's caused scarring and made the skin too tight. She looks like a burns victim most of the time. People are surprised when I tell them it's eczema. Awful disease

E45 cream was no good to me as it has lanolin in it which made my skin flare up, still does. I'd avoid it at all costs.

Have you tried Elidel? It's suitable for use around the eyes, and is the only thing that clears my eyelid psoriasis up. You have to get it on prescription though.

Psoriasis here, 45 years, received loads of advice except anything that works. I cope with it well and would take 100 times over as long as my kids don't get it, so far so good.

Psoriasis and PsA. I've had it my entire adult life and it has definitely shaped who I am. Put weight on due to depression side effects, struggle to exercise due to inverted psoriasis and then as my BMI is high, my psoriasis is bad. It's a hideous, vicious cycle.

I hate people commenting but have learned how to respond...nicely to children at work; less nicely when my in laws make reference to it again and again.

I'm on immunosuppresants. I wish it would just go away. It hurts and is so incredibly dry. I have appointments every six months so I'm waiting to tell them about my current flare although they won't do anything as almost none of the meds are licensed for pregnancy/breastfeeding.

What you can get for your eczema on the NHS is rapidly reducing.

"But it's cheaper to buy it."

Not really; I have a PPC, as do most people with chronic conditions. If you won't prescribe it, I have to pay extra.

I'm pissed off enough at having to pay for prescriptions, let alone having to pay for prescriptions and then another round of charges on top.

The worst thing is when you get a doctor who knows something would help you, but they're just not allowed to prescribe it.

It's awful, isn't it. The thing that has always struck me - quite apart from the emotional and physical side of it - is how much time is spent just looking after the skin. My brother used to spend hours every day just trying to ensure that he didn't make a bad situation any worse 😕.

lots of people don’t get it

what I would love is if people stopped suggesting eczema is stress related. I’m
sure it is for some people, but for me it’s environment triggers and there is nothing more stress inducing than being told meditation might help.

I hear you. My young child has psoriasis and I feel like people shrug it off as no big deal and/or make stupid product recommendations as if it were dry skin rather than an autoimmune disease FFS. Even wider family don't get it.

I also feel like a Guinea pig with the condition I’ve got it’s a case of trial and error to find what medication will clear it. I’m on a third different sort now and it’s not made any difference. I’ve had antibiotics at least once a month since last June and ended up with MRSA which I’m now being treated for with foul antibiotics that make me feel really sick.

@moonlight1705

You could pay for a private derm to prescribe steroids for your eyelids when necessary. I have been using them from time to time for 30 odd years, and am less wrinkly around the eyes than the average for my age.

There is a deep fear of steroids thinning the skin - which there broadly should be, but it gets over egged because of some terrible overprescribing in the 50s.

GPs have very little training in dermotology and tend to be over cautious. A lot of Dermotologists will say that the occasional course of steroids does your skin less harm than constant inflammation.

Oh yes this one really annoys me ‘it’s because your stressed’. A few years ago when I was going through multiple miscarriages the dermatologist told me it was all in my head and I was causing the blisters because I was stressed. They gave me antidepressants which made no difference mainly because I wasn’t depressed!

years later they did a biopsy and cut one of the blisters intact off my hand which showed this really rare condition. It’s amazing how differently I’ve been treated since.

My husband has psoriasis too. When we first met it was just under his hair but it's spread to his torso and we now think, after years of increasing pain in his knuckles that would come and go, that he actually has psoriatic arthritis. He's really heart broken. Really struggling to move his fingers and the gp receptions basically laughed at him when he called to book an appointment at 8:30 this morning because they appointments had been given out already.

My DH has had chronic eczema all his life. He spent periods in hospital and had to drop out of university.

We hesitated about having a family .

He had a massive flare up again just after our first DS was born. He was having hallucinations and was very poorly.

He spent )££ on private dermatologists but as anyone on this thread will know there is seldom a cure- just management.

His skin improved massively when he retired and stopped commuting and wearing suits.

Just recently he told me that the reason he prefers low lighting is that he hates to look at his skin. I felt so sad for him.

My eldest had ‘horrific psoriasis’ as a teen, and now has ‘horrible’. It’s impacted her so much it’s shaped her as a person to some extent, the limitations on activities at times, the social awkwardness, the pain, the implications that she doesn’t follow treatments or try hard enough.

I know being asked ‘have you tried…’ is horrible, but Enstillar was a miracle for two of my girls. It’s a foam and it broke the cycle even without reliance. Two weeks of use got back to a point of reasonable maintenance again.

@neverwakeasleepingdragon yes that's exactly it. I have a PPC as well. But they are happy to let me have all sorts of hardcore steroids, whilst I had to pay to get AR privately, when it has literally eliminated the problem. Some GP's get on board and prescribe the elements of the compound separately, and you mix it yourself at home.

Mine point blank refused, despite seeing the bloody miracle that it's achieved.

Let me just state again, I've had it all my life, 36 years of agony, to be totally clear (with the odd flare) of eczema for two years, after two weeks. I've spent the money a thousand times over on steroid/'miracle cures'/etc.

I have eczema and really suffered during and after pregnancy, sleep deprivation triggered it quite badly.
Funnily enough I work in pharmacy and help supply the new biologics for eczema. I love reading clinic letters after patients start and it changes their lives. Dupilumab and baricitinib can work wonders (I haven't had this level of treatment though, only got as far as topical tacrolimus when I was a teeneager, I probably needed more when I was post partum but I didn't want to stop breastfeeding).

Please please don’t cover psoriasis up. It is so much better where it is visible. DC’s first flare up has been along their hairline so they have had their hair pinned back for the last few weeks and it’s improving. Also has their first patch on their arm so it’s been T-shirt all the way and it seems to be going. I have it everywhere, my toenails are spectacular but I’m not going to let it stop me wearing sandals, I don’t care.

@alternating Your eczema sounds the same as my DPs. Sleepless nights, depression to add to the mix plus asthma. We tried loads of things that worked initially then stopped but the eczema has finally calmed down to a manageable level with minimal steroid creams having to be used. We've put it down to no carpets, curtains, fabric seating (dust mite). Better diet, supplements,far less alcohol and moving away from a very mouldy area. I feel for everyone with skin complaints etc.

"My sister had that. She started putting oats in her bath water and it totally disappeared."

Coolio. I have to get UV light treatment that only clears mine up 65%. Then in a year I'll be back to being 90% covered.

Ah, tacrolimus. Another drug they hate prescribing.

I feel like every GP only ever wants to prescribe hydrocortisone and E45. Wait, that's a lie; they'll tell you to buy that over the counter these days!

Having lived with this my whole life and used different strength steroids depending on how severe it's been, it's difficult to bite my tongue when discussing with some GPs. Occasionally you luck out and you get one who actually has an interest in dermatology.

I don't even mind when they use that damn book to check drugs (even though it shows I know more about them than they do). At least they're open to looking them up. Some of them refuse to go outside their comfort zone.

Mine was/is stress related. For 5 years I battled with steroid creams and suffered horribly with it around my neck and chest area.
When I removed the stress that was causing it (step family issues) I can now manage it with emollient cream, it’s turned my life around! I knew it flared when the stress was particularly bad, but didn’t think the environment was the root cause. Looking back it was obvious when it started.