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.

This sounds awful. I'm so sorry. I have psoriasis. It's a shitty, debilitating condition that isn't taken as seriously as it should be. No advice because mine is treated by steroids but I hear you. Sending a big hug to you and hope you feel better soon 😊

I’m so sorry op, psoriasis can be so utterly miserable. I don’t think I have anything useful to add but didn’t want to read and run. My dp is on biologic injections for his psoriasis which has been life transforming but I know it can be a long road to get there. Keep on phoning the dermatology dept to see if they have any cancellations that could get you an appointment sooner. I don’t know what else to suggest.

Thank you both very much. It’s relieving to know others experience this too and that I’m not alone, but also sad that others have to go through it too as it’s awful.

Op are you a suitable candidate for PUVA? It really transformed my skin but I had to have stand up row with the consultant to get it and that was after twenty odd years of being fobbed off w allll the creams and emollients and developing psoriatic arthritis. They kept telling me it wasn’t severe enough because it wasn’t on my face and hands so I could hide it. It was terrible as a young woman not being able to enjoy my body and I know it really gets you down.
I still have psoriasis but it has never been as bad since the treatment. Also on the recommendation of the dermatology nurse who treated me I do occasionally use sun beds for v short bursts a few mins at a time - the low risk is worth it to me to keep it under control but everyone has to make their own decisions on that. I know a lot of other psoriasis sufferers of all ages here do the same, men and women.

Also have you considered diet? Gluten can be a trigger. Am sure we all know certain foods )usually the most delicious) can make it worse. I also take a high dose of Vit D as I read that studies seem to be showing it may help too.
As the other poster above has said it’s a dreadful condition and despite it being q common there is little understanding in society and I think a lot of shame still surrounding the condition, which is totally bonkers

Final PS!!! If you have scalp psoriasis I was recently recommended a non medical shampoo which is excellent. I’ve only been using it for two weeks and honestly such a difference. Unlike all the medicated shampoos it smells wonderful and doesn’t leave your hair like wire wool!!! It’s Garnier Ultimate Blends Delicate Oat Milk. It’s cheap and while you might struggle to get it in every boots or Superdrug you can order it online and pick up in store! Worth a go for a couple of quid

I have psoriasis too and I just started Skyrizi injections. I’m to take them week 0, week 4 and every 3 months thereafter. About to have my second dose and no improvement yet but I’ve been told it can take up to 4 months. I’ll let you know if it’s helpful!

I'm so sorry. That sounds so difficult.

Coconut oil may help.

There is evidence that having one's tonsils removed reduces flares. Can you look into private removal ?

Oh god you poor thing, OP. I was like you two years ago and was finally put onto biologic injections.

When you say steroids don't work, have you tried Enstilar foam? I use that in combination with my injections because my psoriatic flare-ups are so persistent.

As pp says, ultra-violet treatments are very good. I came to the limit of mine though (both UVA and UVB) so no more UV for me ever. Which is a shame as I have a private UVB canopy sitting unused in my room ... I bought mine from a place in London.

I have it in my ears and it particularly itches,when I get stressed. Everyone knows when I start rubbing my ears, to back iff. Lol.

My dad had terrible psoriasis and he went into hospital and had tar, I think it was, slathered on his body. I think he was in for about three weeks. He had a lovely time! It didn't cure it completely but it stopped the bleeding and the flaky skin which was really good enough for him. .

Sorry, op, I sounded quite jolly there and I didn't mean to. It's a really horrible, uncomfortable condition that is so hard to deal with. My sympathies,and I hope you get some respite soon.

You poor thing

Oh Lordy I feel for you!
Can you see your GP at least- I am a GP and the lack of ability to refer to dermatologist in my area is appalling!
Us GPs are getting better at managing.
steroids often help but you need to be brave and use the potent ones.. better a potent steroid for short period than a mild one which dose’s work.

I’m so sorry you are going through this. My husband has psoriasis and like you nothing worked, until I read about the benefits of freshly blended celery juice each morning, so he gave it a try and it worked!! It’s an absolute pain to make every day but it completely cleared his psoriasis up. Maybe worth a try to see if it works for you too. Sending big hugs!

Im awake with mine OP.

I really hope you get some respite soon . Soothing hugs for you x

If you would like to go down the food intolerance route, this is a start.
fedup.com.au/factsheets/symptom-factsheets/eczema

A good dietitian trained in the Royal Prince Alfred Hospital Allergy Unit elimination diet is a must. The website above has UK links.

I don’t know about psoriasis but some eczema sufferers have found relief from bleach baths. www.rch.org.au/uploadedFiles/Main/Content/derm/eczema-bath-information.pdf

I used to be like this for years. My sheets would be covered in blood from scratching in my sleep. My scalp used to weep from it. Mine is pretty much in remission now . Changing my diet definitely helped

My DH was in despair after years of suffering, just like you, OP. He was even talking about feeling it was not worth going on any more (he's 73). Our absolutely lovely dermatologist tried everything, and eventually, it was the biologic injections, and flare-ups treated with Elocon (we're not in the UK). He has scarring and discolouration on his back and legs, but the relief from the pain and itching is beyond belief. Good luck with everything...I'm so sorry that you are having to go through this. Have a wonderful Christmas, despite everything. x

Waken too, been up three times just trying toget relief from itching and scratching. No help from medical practice, just Aveena and Cavilon. I'm so sorry, OP, it is a nightmare. Ihave it behind my ears, and am covered in itchy spots from an allergy. I scratch until I bleed, although I try not to. Thinking of you and hope you get some sleep soon. 💐

Neutrogena T Gel helped my son who has scalp psoriasis. Best wishes. It can get really awful.

Check out Joe Cross and his documentary called ‘fat, sick and nearly dead”. There is usually a free copy on YouTube if you don’t wish to pay for one.

he had many of the symptoms that you describe and over 30-60 days he weaned himself off them ( under medical supervision)

I used his approach for a 2 week re-boot of my body and was able to stop taking meds for gout and rarely get psoriasis now. These autoimmune things all seem to be related.

I’m not saying that you are large - I don’t know - but you sound near the end of your tether. On his journey he meets many people who benefit from what he is doing - helping with migraines, periods and other things.

keep an open mind and watch it. I’m so glad I did.

Weirdly I'm up having worried myself about eczema symptoms. I can also no longer wear earrings or perfume on my skin. I blame it all on peri menopause.

But mine sounds very minor compared to you. I hope you can get an appointment soon . Is it worth going back to the GP? I would try that while you're waiting.

Much empathy with the OP and, yes, the biological treatments can be life-changing.

OP, can you not have a referral to an immunologist?

www.nhs.uk/conditions/psoriasis/treatment/

My old friend had severe eczema and said some sort of light therapy helped. I can't ask as I lost contact with her.

dupixent/dupilumab!! get yourself to a dermatologist and ask about it - changed my life!