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.

My aunt gets the sun bed without the damage via her dermatologist.
if I was you I'd go straight for the sunbed to try and get some relief - wishing you all the best

Oh sending you massive hugs. I have had nights crying about my psoriasis and so really feel your pain. Mine is settled at the moment but often have a big flare in January. Over time I have realised that steroids do nothing for me. My first massive flare up, the dermatologist put me on exorex which is a tar based liquid and the reduced my psoriasis massively (at this point 70% of my body was covered). My next massive flare they gave me light therapy and that was the only time in my adult like, that my skin has been clear.
Sadly, what works for one person doesn't always work for another.
If you've never tried exorex could be worth asking your GP to prescribe whilst waiting for March,?? It might not work but at least you feel like you are doing something

Absolutely no judgement, but do you smoke or live with a smoker by any chance?

Mine was horrendous for years and like you I’d tried everything including PUVA. I was supposed to be starting biologics but in the meantime DH and I gave up smoking and my psoriasis went into remission. Six years on and I haven’t had another flare, I just have a few stubborn patches. I’d never realised there was a connection.

Have you had a throat swab for streptococcus? There’s a possible link between tonsillitis and chronic plaque psoriasis flares, so it’s worth asking if not. I was strep positive and a long course of low dose antibiotics helped.

So sorry for you, my son has it but only on his scalp( confirmed by doctor it's not dandruff, tho we thought it was for ages) He also has pseudo coeliac disease and doesn't eat gluten any more, which seems to have helped the skin too.

I have been there.

Do you have any bandages, the ones with the white stuff on, sorry I can't remember the name, in my house they are called, 'magic bandages'.

i feel for you OP. They used to give a chemotherapy drug called methotrexate for bad psoriasis- my boss had it and it changed her life - this was about 15 years ago so not sure if they still use it? It’s pretty hard core as a drug (although not nearly as toxic as some other chemo drugs) but I don’t think people /lots of doctors really understand how something like what you are suffering can totally ruin your life. I know there are also newer biological agents - I hope you can get help for it.

You might need to be really firm with your doctor - explain just how awful it is making your life and that you are prepared to balance the risks of drugs against the risks to your mental health /potential self harm. 💐

please google health kinesiology has been known to help

There might be some helpful info on here OP to help push your GP to refer you to a specialist.

www.nice.org.uk/guidance/cg153

www.nice.org.uk/guidance/qs40

Gosh, I really do feel for you. I have suffered with it in the past and I know how painful and debilitating it can be.
Like you, I had been prescribed every emollient and steroid going including Enstilar which is one of the strongest I think. A re-referral to dermatology resulted in me being prescribed different creams, salycylic acid based and they really helped and am now psoriasis free. I also swear hot sun and sea helped it along in my first holiday abroad in years!

Sympathy OP. I am in a similar situation at the moment. I also get irrationally irritated by all the people posting about diet etc when it's always made bugger all difference to me. I was on methotrexate for a while and it completely cleared my skin although messed up my liver. Biologics have been life changing though (I'm only in a flare now because I am in the process of switching)

Oh I feel for you, I have a close friend with the same problem and I have seen her struggle so horribly. It isn't fair xx

I am so sorry OP. That sounds awful. I have psoriasis but only on feet and hands so can only imagine the depth of your suffering. Hugs and really hope you can find something that works for you.

So sorry to hear that OP. Skin issues are horrible and can be so painful and disruptive, I hope you can find some relief soon.

I personally suffer from eczema and have been awake since early hours exactly because my knees/legs are itching like mad; when it flares I always get the worst itching at night which is maddening and extremely unhelpful. On top of that, the cold weather has been doing a number on my hands and both are currently wrapped in literal bandages because the backs are so dry and sore and would otherwise be bleeding on the bed...

I find stress, tight clothes and cold weather make it worse but honestly that's not a fat lot of use because it's not like 2 out of 3 of those are particularly avoidable! The hand wraps I use are literally a thick layer of vaseline (applied to wet skin, importantly), a sterile, non adhesive and non allergenic wound pad on top, and a conforming bandage wrapped around to hold it in place. Looks completely ridiculous - though the alternative is often just bleeding on stuff! - so I try to just wear them just overnight if I can get away with it. But they're the only way I've found of getting relief on my hands - other moisturisers, emollients etc just sting like mad (irritating it further) and do nothing to help. Used to use vaseline+cotton gloves overnight but find the wound pad/bandage thing works better - it seems to trap more moisture and doesn't move about so much when I sleep.

Only real relief I get on my legs when it's bad is with steroid cream, though when it's not too bad I find the E45 cream with urea can help if I catch it before the skin gets too broken.

Long and short of it - much sympathy here. Again, hope you can find something that gives you relief soon!

Nothing but sympathy OP. It’s a horrible and painful condition. I hope you get to see a specialist very soon.

I have flare ups of relatively minor eczema on my feet, legs and hands with menopause (used to have it in my teens too) and I find the itching unbearable, I can’t begin to imagine what you must be going through.

People on this thread have made some great recommendations, it is probably time to be quite insistent with your GP and arm yourself with the NICE guidelines and a clear course of action that you would like them to take. It is not reasonable for people to have to suffer this if there are treatments available.

Good luck. X

No advice other than get your GP to chase your referral as it's really impacting your life adversely. I'm so sorry - I would be miserable too 💗.

My husband suffers v badly from eczema. He has had Methotrexate, many many rounds of Ciclosporin, and now on another prescribed from hospital - Rinvoq.

His also gets very badly infected - is this maybe the case with yours?

Not much help just sending some love xx

For those of you suffering so badly with eczema, I whole heartedly recommend the Dr Aron regime. Honestly it saved my skin, 37 years of horrendous eczema, trying everything under the sun that didn't work, and two weeks of applying the compound and my skin was clear.

I still get small flare ups, especially now due to the cold/stress etc, but just spot treat. Initially it is expensive, but my god, it's worth every penny, and when I think of how much I've spent over the decades on creams and other treatments, I wish I had tried this far sooner.

I read a book recently by Jeff T Bowles that said upping your Vitamin D can really help with this. The book is titled “the miraculous cure for and prevention of all diseases”. It’s an interesting read and if you follow the links provided by him you’ll see testimonies of people who’ve apparently cured their psoriasis really quite quickly by following his instructions. Read the whole book before you start to treat yourself though as you need Vit k, zinc, magnesium and boron in conjunction with the Vit D to help it work to maximum effect with no side effects. Best of luck if you try it.

Have you looked at the waiting list in surrounding areas? I have a family member who was referred to dermatology at the local hospital and the wait time was 6 months. The next nearest hospital (30 mins further away) had a waiting time of 3 weeks and has much more availability in general. Under choose and book you can go to any. Start by ringing round other dermatology departments and asking them. If you find one which is significantly shorter as your GP to re-refer you.

I have severe psoriasis I’ve had it since I was eight years of age I finally qualified for biologic treatment. I inject tremfya every eight weeks and it’s been an absolute game changer. I had tried cyclosporine and methotrexate before but they both gave me serious side-effects so the next stage was to try biologics. check with your dermatologist to see if you qualify if you do, it will be a total game changer. Obviously it comes with the risks of being immuno compromised .

Sorry *ask your GP to re-refer you.

Sympathies op, that sounds so painful. I'd be worried about infections if you have so many open sores, it sounds quite serious to me and I am sorry you are getting fobbed off.

I'm so so sorry. Have you been offered UV light therapy? It worked wonders for me.

My mum suffered terribly with psoriasis. I have it very mildly, mainly in my scalp and I am devastated that my 12 year old also has signs on her scalp. eyerollcentral thanks for the shampoo recommendation, I will get some to try, more for her than me, I find T-gel helps, but DD hates the smell