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 had mild eczema, treated by strong steroid creams- betnovate, eumovate etc. They gave me the horror of Topical Steroid Withdrawal.

Topical steroid withdrawal (TSW) is a syndrome/ drug withdrawal I've suffer from for over three years now. It has been horrific. A bone deep itch, flaming red, swollen burning skin- mostly the face. Evolving over weeks into a thick dry crust of skin that flakes off. My face literally fell off. And my body's skin. Any water, emollient or sweat was horribly painful and stung. Dry, cracked, oozing, open wounds, no skin on my neck or hands. As it's a syndrome, it has other symptoms: Insomnia for years, night sweats, swollen lymph nodes, hair loss, nerve pain. I could shower for a year, couldn't sleep with a pillow (neck oozing) couldn't exercise, couldn't appear in public for a few months due to my appearance. It was so awful and emotionally battering.

All from over prescribed steroid creams. Light therapy is helping, and antihistamines to help with sleep, I've refused methotrexate for now. Please be warned about steroid creams.

Cocois helps a bit. My DC has a lot on their hairline so have been wearing their hair as far back off their face as possible. I find putting a bit of Exorex lotion on it helps, it’s the best thing for me to stop soreness.

@MumEeeee leave it on for, at least 5 minutes, and rinse with a shower if possible. I'm sure you'll be amazed. If they have it anywhere else I have many solutions. Feel free to PM me

I’m wary of a lot of treatment options as quite a few of the health issues linked to psoriasis seem to actually be linked to the treatment. There’s no way I want my DC near steroids to treat something which is troubling them from a cosmetic point of view - if it’s physically debilitating, yes absolutely, but not otherwise. And yes, I have been there, I’ve had psoriasis since I was 13.

That also describes my psoriasis flares before I got prescribed strong steroids. The steroids made it stop and kept it under control until I started the biologics.

Gosh I didn't realise how bad these skin conditions can get .

Sending a hug and well wishes to all who have been affected by it. My dd had a rather cracked heel lately, it had split and was bleeding and the doc said it was psoriasis and then we were told it's a type of eczma. Luckily the cream she's given has mostly got rid of it but we had a little taste of how painful it can be and it wasn't nice at all.

@RollerPolarBear I stopped all steroid based treatment as I was bloated and lethargic. My psoriasis is still bad but a lot more manageable without the side effects

Yep. My baby had severe eczema from 3 months old covering his whole body. It was blistered and weeping and just bloody awful. We saw 2 GPs who just kept prescribing moisturisers. I was applying it 12 times a day and it was just absorbing in immediately to his raw skin and doing nothing. We were eventually seen in A&E for a severe allergic reaction and the dermatologist prescribed steroids which were a lifesaver. Still battling with eczema flares 2 years on but it's so much better now we've stopped contact with all the foods he's allergic to.

And little old me used to think eczema was a bit of dry skin on the elbows....

A very tentative suggestion but have they offered Xolair?

Its hairdressers that upset me most with their suggestions, from diet, to random concoctions to reiki. Dont thry think Ive tried everything?

Methotrexate has made a big difference to mine, but my scalp still needs a mix of elecon, cocois and etrivex frequently. Because the rest is so well controlled, my wonderful derm thinks it will be hard to secure funding for a biologic, so we are giving the regime one last push.

Ive 8 seperate items on my last derm prescription.

This is my skin without Xolair (after a night of dancing) and with it (after exercise)
People go "oh yeah I get heat rash"
It's everywhere from the palms of my hands to my scalp, thousands of hives, antihistamines don't touch it and even walking to the car brings it up
And the list of stuff I tried before Xolair..

I took methotrexate for about a decade. I stopped because the side effects were not worth it for me, it is a balance. I have psoriasis and that turned into arthritis.

When I took it the day after was a right off, I felt like I had flu.

It is a balancing act and not everyone copes, but not everyone has side effects either.

Psoriasis and psoriatic arthritis here. Was on Imraldi last year but didn’t work. Have also had a stoma since then, great fun if you get a patch by that! Not!

I get you! I don’t have it but my uncle seriously considered moving to a warmer, more humid climate as his psoriasis could get so bad in the cold dry winters where he lived. Had it since age 7.

Yep I've had scalp psoriasis since 12 and it really took a toll ok my confidence, i only got a handle on it in my 30s when i paid to see a private consultant and the first thing they prescribed worked. A part of me is annoyed my parents let me suffer with it as a child.
When my 3 year old developed eczema i went to my GP and just kept trying different creams until we got something that worked but I wouldn't have have stopped until I found something because i know how awful it can be.

I actually feel lucky to only have it on my scalp (apart from the odd small patch on my body) and to have found a treatment that works even if it means using it everyday without fail or it will return

Honestly once a relative recommended Tgel and it took all my restraint to not be a cheeky bitch, i just smiled and nodded 🤦‍♀️

Oh and I remember I seriously considered shaving my head because I couldn't take the itch anymore

A private appointment with a dermatologist is about £200 and they are able to prescribe a wide range of Big Gun treatments. Paying for them is quite a different matter but if you have private medical insurance they should cover it.

The immuno suppressants and biologics have some outstanding results but it’s not always clear which patients are going to respond. The results we saw with monoclonal antibodies were amazing but only 40% of patients responded. Intravenous immunoglobulin was the other go-to, again great results but they’re heavy duty drugs.

(big Pharma here, plus I have psoriasis which is in remission.)

@Hippopotas @SizzlestheSausageDog
I'm already on Cimzia from my first. Got told I would flare after I stopped breastfeeding. I did, right on schedule. Accidentally now pregnant....waiting for it to be suppressed 2nd time around. I doubt they will do anything about this particular flare...I don't want steroids, can't move immunosuppressants and have had my max of light therapy.

But thanks. 😀

@PeloAddict Xolair has been discussed and it will be the next treatment if it gets bad again. Luckily the last 18 months have been much better - my flare ups have been small and short so I'm managing it with Loratadine at the moment.
I tend to be worse in winter as it's exacerbated by cold weather but since I had covid in October I've been largely in remission. No idea why covid would make a difference but I'll take it! Your skin looks like mine normally does in cold weather, so glad that Xolair is working for you. Its a hard pain to describe as itchy doesn't really come close!

@EnglishGirlApproximately it's honestly been a miracle drug and no side effects
The other day I did a spin class, a stretch class, had a hot shower and wondered what felt "off"
Not one hive

Its definitely on my radar for any future flare ups. I must admit I did laugh at your list of things you can't do as you actually get it - can I add a few;
Kneel or sit on sand
Sit on textured surfaces in shorts
Wear socks with tight bands
Wear watches or other tight jewellery
Go to a spa
Wear socks with patterns (newish discover- the embroidery underneath has given me nice polka dot hives )
Any waxing anywhere
I know it isn't funny but it's just so ridiculous that perfectly standard things create issues!

Absolutely you are NBU. I'm now 40, have had psoriasis since I was 14. Mainly flexular (in skin folds), where it's very sore, but also big plaques on my legs and smaller plaques scattered almost all over my body. It also affects my nails with pitting, thickening and nail separation, which makes it look like I constantly have fungal nail infections.

What gets me is that even dermatologists don't seem to get it. I'm raging at the moment over a really insensitively worded letter from my dermatologist which basically seems to imply I need to lose weight (without any understanding my weight might be linked to the psoriasis) and also describes me as having complex mental health difficulties WHICH I DEFINITELY DO NOT. It honestly seems that if you ever mention even a brief mental health crisis to your GP you're labelled as nuts for life....

It is! I'm trying to lose weight but like I said how can I lose weight when I can't move?! It got to a point where I could walk to the car and that would cover me in hives

Yes, I have had it for over 30 years, have had periods of full body coverage, I always found it ironic that I was a self conscious person anyway and that I have ended up with a highly visible skin disease but I believe that these two things are linked for me. I don't mind that other people don't get it, we all have different things to deal with, the toll on my own mental health has been enough without worrying about whether or not other people understand. Mine goes through phases and currently through the heat this year I have been in long sleeves which people question me about and I don't tell them about psoriasis. I think that's because next summer my skin might be clear and I find it hard to notice when people still stare at my arms looking for the spots that I have covered up previously. My mother in law does this a lot, she may not be aware. It is quite an isolating disease and I do believe it is linked strongly to mental health, and I don't necessarily mean it is about stress. That has been my experience anyway. Thanks for this thread tho, it's helpful to remember others live with this too.

I feel your pain! My skin condition is different - it’s very thick, itchy skin on my feet which prevents me from sleeping. I’m under the hospital specialist and like you have tried all sorts of everything over the years.

I agree with you - people say things like “oh have you tried x moisturiser, just not thinking about it (wtf?), etc - no! It’s in a whole different league to anything you think you know about.

The thing it reminds me of is people saying “have you tried ginger biscuits” when some one has HG.