To cry myself to sleep over this

[Itsnotfair2]

Having a horrendous psoriasis flare up atm. I have eczema as well which makes the skin dry and sore too. The psoriasis is awful and the plaques have cracked open and my skin is leaking blood- my pjs have blood on them, my bed sheets have blood on them, my pillow has blood on it. Everytime I move, something cracks open. Everything is painful and lying down on it is agony but getting back up and moving hurts it aswell.

I have used every moisturiser, emoliant, cream, steroid and other treatment. I’m under dermatology as my skin is so bad but getting an appointment is near on impossible atm. I can’t use steroid creams anymore because I had a bad side effect from them and it’s too risky now so I can’t use them. Although they didn’t help massively anyway.

please can someone just give me some new skin once and for all because mine is officially shit.

im crying myself to sleep about this yet again, although crying makes it worse because the tears sting like f* on my face.

I feel for you OP, my sister had severe untreatable psoriasis for years. The light therapy sunbeds at hospital went some way to clearing it but what has honestly cured her ia using HUMIRA injections for psoriasis. She has been on them for about 5 years.

Ignore people talking about ezema which is a totally different thing or suggesting food intolerance tests. Psoriasis is an autoimmune disease akin to Lupus, Chrons, colitis and arthritis. Creams might help symptoms but it will the autoimmune response will always be there.

I’m sorry for you, that sounds really tough. I hope you get some relief from it.

sorry for the stupid question but is there any pattern, do you think there is anything making the flares worse for you? Like the cold weather as mentioned above. it sounds really painful.

My friend has very bad eczema and there is no rhyme or reason to hers.

(I know they are completely different but she tells me that she has really tough nights and it’s a very isolating condition)

Honestly, I would wait and ask about immunotherapy and immunosuppressant creams (elidel) They work differently to steroids and may help stave off reactions.

I know I’ll get shot down for this and thought carefully about posting but on balance, I bloody wish someone had told me sooner.

I had horrendous psoriasis and I cleared it up using sunbeds. Completely cleared it. I don’t go on them regularly, just when it flares up. I might have 2 sessions for 4-6 weeks then I’ll be fine for a few months. Usually when the weather changes it can start up again. One thing that really has helped with not needing them as frequently was going on an anti inflammatory diet. I started that in April this year and I haven’t needed to use a sunbed at all. It’s been amazing.

RE: "ignore people talking about eczema" - OP mentions they have eczema as well (2nd sentence of the post).

So sorry OP, cracking plaques are agony and the daily greasy grind of psoriasis control is a complete PIA.

I've had it since my parents divorced when I was 20, I'm 65 now. I've had sunbed treatment and prescribed steroid creams, I've also tried E45, Aveeno, Body Shop Hemp body butter, Child's Farm, you name it I've tried it. Sometimes they work, sometimes they don't. For very sore areas Sudocrem gives me some relief without the angry stinging and burning.

I do take Vit D every day,1000 strength, a friend said to try 2000.

When I couldn't sleep recently because of the itching, I saw the pharmacist. He recommended I take hayfever tablets containing cetirizine hydrochloride. He said I could double the dose safely, when it's bad I take one in the morning, one before bed. I'm going to give it a try.

Good luck.

PUVA has been mentioned and this would likely made a big difference. As a stop gap, you could try red light therapy which is a lot cheaper but not as effective. It does reduce inflammation and itching though. You need a good quality bed so research what is available in your location.

I have horrendous scalp psoriasis. It ruins my life. I have blood on my pillow every morning.
I have medicine for it, but it doesn’t help much except for those spots where I have no skin then it heals faster when I put the drops on.

I can however recommend Kérastase
Spécifique Bain Anit-Pelliculaire shampoo, you only need a tiny amount and leave it on for a minute or two. I also find that Roots scalp treatment from Lush soothes it, in the evenlngs I can put the treatment on parts of my scalp and at least it stops it itching as much..

www.lush.com/uk/en/p/roots-hair-treatment

💐 so sorry that you're having such a miserable time.

And for anyone with eczema, be very wary of any dermatologists recommending a fungal cream. My daughter was in absolute agony when she had eczema on her hands and the dermatologist prescribed this. Do a spot test with any new creams first.

I am so sorry that you are going through this. I have had really bad flare ups of exzema on and off throughout my life - one time it was so horrendous - my arms and hands looked like bloody cracked lobster claws. Nothing worked. So i decided to try chinese herbalism. The concoctions were horrendous, foul smelling, and absolutely disgusting to imbide. So bitter that i had to hold my nose, swallow the stuff as quickly as possible, and take a big spoon of honey. It absolutely worked - cleared it up where normal medicine had failed to make any inroads. It comes back now and again - but never had it as bad. just thought i'd relay my experience. Wishing you well.

If you aren't vegetarian, give bone broth a go.

Are the cracks very big op ? I ask as when I get cracked eczema on my hands or weepy areas the only relief I have got is with blister/ hydrocolloid plasters. But they are small

I buy Morrisons blister plasters but even with the big one you will get about an inch of coverage

I've had severe psoriasis for 26 years and it gradually got worse and worse. I tried all the various creams, UBV treatment, Ciclosporin, methotrexate etc etc eventually I had exhausted everything dermatologist could prescribe and they referred me to the Severe Skin Clinic where they agreed biologics were the next step. Life changing! I'm currently on Skyrizi injection every 3 months. It is starting to come back slightly but my life has improved massively I would say my skin is 99% cleared. I do have signs of psoriatic arthritis which is disappointing but I do feel a million times better on the biologics. Get referred to dermatology and keep on at them don't let them fob you off. Check the side effects of methotrexate etc as I found the side effects worse than the benefits...my hair fell out, depression, stomach upsets etc. some aren't worth it but it's all about finding which works for you. Biologics don't cost as much as they used to do they are happier to prescribe them now. Good luck 🤞

I really sympathise OP, it sounds horrendous for you. Have you tried this stuff from Balmonds, very good reviews: balmonds.co.uk/products/skin-salvation?variant=517811666963&gclid=EAIaIQobChMIke3glfKC_AIVjMLtCh3OLgReEAQYASABEgJyN_D_BwE

Also, I've got eczema and have always suspected there is a link between conditions of that kind and diet/gut bacteria. Have you tried cutting anything out of your diet or getting a food intolerance test done? It might be that something you are coming into contact with or ingesting is making your symptoms worse?

Have you tried the Dr Aron regime?

They kept telling me it wasn’t severe enough because it wasn’t on my face and hands so I could hide it.

That is fucking shocking @Eyerollcentral I am so sorry.
"You are a young woman - all that's important here is how other people see you. You can pass as 'normal' as they can't see the condition under your clothes, so fuck how it feels for you, you are really not the important party in this equation."

OP, how horrible for you. I hope you get lots of replies for support, & maybe even some new ideas, or ways to approach a consultant to get some action.
There just isn't enough thought given to how debilitating skin conditions are - it totally fucks up your life to not have the socially-acceptable unscarred, clear skin promoted everywhere.

I know you've tried everything so this is unlikely to be news to you, but Dermol saved me from a horrible localised outbreak a couple of weeks ago, where steroid & cortisol creams failed - seemed to make it worse. I have a stress-related thing which GP's can't quite narrow down - not psoriasis, maybe hyperhidrosis ... or maybe 2 other things I can't even remember the damn names for right now. Dermol is at least soothing, & gently microbacterial. When I get a flare up I wash with it & use it as a moisturiser/healer.

www.chemistdirect.co.uk/dermol-200-shower-emollient/prd-0141731?glCountry=GB&glCurrency=GBP

I really hope you can get a switched-on consultant who is willing to see how much this affects your life, & cracks on with finding you some proper relief. 😘

@KettrickenSmiled yeah with hindsight it was ridiculous and I was v young so I didn’t have the ability to advocate for myself. My GP was great and referred me before I turned 18 and several times after that. I always had to go to appointments on my own and once they turned me down I didn’t know how to push back. It was also humiliating to have to strip down to my bra and knickers at 18 so a middle aged man could look at me, even more so when he said well you have obviously got a beautiful body (vom) but look at the people out there in the waiting room they have it much worse than you!!! Why he couldn’t put me on the waiting list I genuinely do not know but as I say I was too young to argue and I was already mortified. I really hope there is a lot more understanding now and education especially around psoriatic arthritis- the hidden extra that just pops up when you are still a young woman!!!!

well you have obviously got a beautiful body (vom) but look at the people out there in the waiting room they have it much worse than you!!

JEEZE, @Eyerollcentral !

You've reminded me of something so similar.
Way back in the early 80's, I had a period of experiencing vaginismus. (CSA related, funny that ...)
The male GP was aghast. "But you are a beautiful young woman!"
Gack. Obviously, as a BYW, my function was to Do Sex.
I wonder if he'd thought I was a minger, how different his approach might have been? "Don't worry dear, it's not as important as Having A Personality, maybe you should do some nice charity work & forget all about it"?

His solution?
Valium on repeat prescription.

Yeah, never mind the pain & lifelong trauma, just drug her til she puts out for her man. Absolutely zero concern for my feelings - on a follow up visit, he was more concerned about how "happy" my H was than how I was managing. He would literally give me approving feedback for wearing make up & a skirt, & act concerned if I didn't. Like my internal state could only be assessed by how 'sexy' I might look to outsiders.

Sorry, have just seen how big a MeRail that is. I'm leaving it standing though, as women are still treated comparatively badly to men by the medical profession -
time.com/6074224/gender-medicine-history/
www.hormonesmatter.com/women-pain-problems-mistreatment/

It basically boils down to "women's voices are accorded less credibility than men's", & "women are untrustworthy witnesses of their own lives & bodies."

Ash, OP, big, gentle hugs for you, it sounds so painful. It must feel so horrible. I was there once too, with face covered, body covered, itchy, flaky, bleeding, ashamed and self conscious.
I'm not gonna recommend anything but HOPE. Even though every day and night is miserable right now, you WILL eventually get the healthcare you need and the future will be better.

Big, careful, warm and non-itchy hugs.