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?

This is exactly what people are talking about on here ..people who say have you tried ...... 🙄

Cimzia can be used whilst pregnant and breastfeeding at least that’s what my dermatologist told me.

I'm with you OP I'm on a biological for mine and it's still awful, my skin literally splits open if I move wrong.

Yes, I have both! Currently trying not to claw the eczema on my face, caused by mask wearing.

E45 cream made my childhood eczema much worse, my skin felt like it was burning when it was put on, and it was always a battle with my parents until I finally refused completely and it was much better without any moisturiser. I later worked out through trial and error that I must be allergic to lanolin. I think with hindsight that it was often infected too, and I had the stares and comments, and family telling me constantly not to scratch, which really just makes you feel awful on top of the eczema! it improved massively when I started swimming in chlorinated pools regularly.

@neverwakeasleepingdragon I think GPs are generally cautious about treating it, and the prevailing trend is towards minimal steroids. However, in conferences and literature I have found a preference for really hitting eczema hard with steroids to get it under control. Then slowly dropping the steroids. But i can understand you might need to be a specialist to be confident in doing that.
I can't say I'm a huge fan of steroids if you can avoid them so I'm glad there are more options now. Also for psoriasis, new drugs coming out all the time.

If I ever get somebody say 'Oh, you need the Body Shop Ginger shampoo for that' ever again, I think I might scream. Especially if they add in 'and then you won't smell like you're bathing in dog shampoo'.

Seriously, just Fuck Off.

Muttering won't steroids make you fat or muscly like a man? Fuck Off.

And when they wrinkle their noses at the idea of biologics? Fuck Off.

I love my cosentyx even if it feels as though I'm stabbing myself with an angry wasp despite letting it get to room temperature. I can move like an almost normal human being and I'm not begging DP to give me an undercut so assorted treatments can reach my then slightly cooler scalp and only half joking about doing a proper job and clippering the entire lot off .

Best of all from the biologics is no more Psoriasis in my ear canals and no more open wounds in my undercarriage.

@User154871 do not wait for your appointment, phone your specialist nurses now, or the secretaries. Flares respond better if you get to them faster. As PP mentioned cimzia is fine in pregnancy (in fact we give other immunosuppressant biologics in pregnancy if a patient is stable on them, you really don't want to be on methotrexate though.)

For some people it may be impacted by stress, anything that affects the immune system might change it and stress can do that. It doesn’t change mine generally but it had it all the way down to my eyebrows all of a sudden when I was sitting my uni finals.

I have psoriasis on my scalp, which flares up with stress/hormones etc. Has been there since puberty (genetic, my father has psoriasis everywhere). When bf I had it all over my body. It has receded since then, but not to nothing like it was before. It was awful when BF, so I feel a lot of sympathy for those who have it bad permanently

I have Urticarial Vasculitis, contact Urticaria and cold Urticaria and am fairly often suffering with painful hives. I've been under consultant care for over 20 years, have been hospitalised on three occasions for IV steroids as my arms have ballooned so much my skin has split and people still suggest E45 as though I might not of thought of it

I do bite my tongue as I know people are trying to be helpful but when I could rip my skin off to ease the pain its not easy to do!

So much sympathy to fellow sufferers in this thread. I had terrible psoriasis - 75% coverage - and only UV light treatment worked. I've been clear for four years now, with only little patches on my elbows and scalp.

It's an absolute bastard.

In the end I bought my own phototherapy machine. Used sparingly and with caution but it means I can keep it under control as otherwise was regular cycles of being re-referred to dermatology but waiting months and had to be severe to get to that point.

Sorry you have waited so long.
I have mild psoriasis and mild psoriatic arthritis (by mild i mean its a bit shit and some days I feel 150 years old, but i am not crippled with it).

I got out onto immuno supressives quite quickly. Methotrexate, which worked but gave me kidney pain, cleared my skin but no real difference to arthritis.
Currently on Otezla.
I can get the full biologics if I want, but choosing not to.....pandemic etc.

Must be a post code thing that i have been able to access these drugs.....I am under Rheumatology rather than dermatology though.

Yanbu. I imagine that it would make you absolutely miserable, sore, fed up and all the other horrible ways that it impacts on your life.

I'm grateful that I don't have first hand experience.

As a teenager my friend had psoriasis, she'd suffered a lot of trauma that caused the psoriasis to flare up.

I'll never forget the day she showed me her stomach and underneath her hair my heart genuinely sank for her dealing with it daily and alone.

I'm sorry you've had a flare up and hope they find a cure.

Acupuncture did help friend above a small amount, no miracles.

I also get it under my nails and on my tongue. Constantly told to use mouthwash and handcream.....

Since people are here. May I ask if anyone has particularly found something for scalp psoriasis. Plaques around 1-2 inches, temples and hairline bit occasionally crown. Very very fast shedding. A crust can develop over night, it becomes thick. When scratched a clump of hair will come out with the flakes. Unmonitored it will look like cornflakes in the hair.

If anyone recognises this type, what has worked please? It’s quite different to my friends, I manage mostly my daughters through heavy oil or cream to soften the crust and gently remove- but they don’t heal. It bleeds very easily and one treatment was far too harsh.

@MumEeeee www.polytar.co.uk/about-polytar/polytar-4-shampoo

I typed a whole post before about my eczema being so severe I need to have immunosuppressants to keep it under control, that sentence was just me amending a typo, not unsolicited advice.

Thank you

It's not all harsh and really helps. My hairdresser couldn't believe the difference

OP, you really nailed it in your opening post, people do not get it and think it's just skin. It's everything. It affects everything. It's always there. Always on your mind and something to factor in to all plans. I hate it. It's caused me to be off work when even a miscarriage hasn't!

I’m going to order it, I haven’t tried it

Dovobet gel on the scalp overnight, washed out with capasal shampoo in the morning. This combo kept me pretty clear for a few years. I’m having a flare up now though so have upped the frequency back to daily to try and get it back under control.

@MumEeeee polytar won't do anything for bad scalp psoriasis. I alternate daily between diprosalic and dermovate scalp lotion. I shampoo with capasal which is another tab shampoo, but it's only effective with the steroid formula too. It's taken liberally 15 years to get to this point and needed a dermatology referral..I also have it bad in my ears and is locoid scalp ointment for that.