to feel like this is ruining my life.

[wetskin]

I have posted about this a few times on here before name changing- I last posted a few months ago (I think? I can't remember exactly!). I just wanted to start a new thread as its changed since then.

unfortunately its gotten much, much worse and im losing the will to live now. I feel so depressed and miserable and I hate my life so fucking much now. Its embarrassing, painful and im actually frightened that nothing seems to be helping it.

I have a skin problem on my scalp which causes patches of my skin to become red, open and wet. its as if the skin as been completely abraded off it, like in a skinned knee etc. Im not scratching it either - I have no nails as im a biter and I wear gloves anyway in case I was rubbing it during the night but im not.

It started out of the blue 3 ish years ago (I had no skin problems before) and then got really bad and was in my ears, face etc. Because the skin was permanently open wounds, it also got infected constantly. I've had around 8 different antibiotic prescriptions for it in total. I've also had different anti fungal treatments- everything from shampoos to solutions to oral tablets. I've had steroids- topical and oral. Some treatments made no difference. Some helped for a short while then it returned.

Its not going away. I've been seen by a dermatologist who diagnosed it as psoriasis. But other healthcare people have told me it looks nothing like that and now I feel so confused. Its not dry or patchy- its like huge big raw weepy patches of skin.

My problem now is that previously it was mainly around the back of my head, which was bad enough but bearable because it wasn't obvious, but its suddenly spread and is across my entire scalp now, including the top and at my hairline. its everywhere and getting worse. I dont really have much skin on my scalp at the moment- its probably 95% open wet wound. it looks as if someone has shaved the majority of my skin off.

I just want to scream, im so fucking fed up with this. I believe the doctor that its psoriasis, but it looks nothing like it and nothing so far is helping it. Its not like silvery plaques like in psoriases on google- its like huge wet open wounds. My entire head is sticky because my scalp is leaking stuff.

im at a loss. my doctor is at a loss. im waiting to see the dermatologist again and Im so frightened. is this going to be my life now? I know it sounds dramatic but its not just the embarrassment side, its excruciating and I can't lie down at night or have anything touching my scalp.

I just wanted to vent, and to post on here one last final time in case anyone is going through similar and has any advice I could try. I know some people have much bigger problems than this but its destroying my life right now😥

TBH OP, you need a dermatology consultant that specialises in scalp conditions. I was faffed around by the NHS for years, and finally just a week ago went private & self pay for the first time in my life. I now have a firm diagnosis and treatment plan. Just waiting for GP to issue the prescriptions.

Have you had any hair loss? I have a type of scarring alopecia. This site has photos:
scarringalopecia.org

I have Folliculitis Decalvans and it also develops into big open sores if left untreated. Not saying you have the same thing, just that there’s a lot of different conditions and you need an expert.

No advice but just wanted to say I hope you get it sorted soon.

Sending ❤and 🙏your way in the meantime.

Gosh you poor thing that looks so painful and uncomfortable, I'm not surprised you're at your wits end. If I were you I would throw money at seeing as many different private consultant dermatologists as you can afford until you get a solution.

You should be under the top dermatologist to treat this quickly. At least to stop it becoming that painful and infected.
Just hope that because it came without warning, it might just go one day, don't let it make you miserable if you can, keep trying anything to get on top x

Sorry you’re going through this OP!
It sounds like you may have been mis diagnosed for nothing to have helped. Like other posters suggest, please try and see a different dermatologist that specialises in scalp conditions.
I have scalp psoriasis, I have had it since I was 12. Things that make it worse: cold weather is the worst thing, dry shampoo, wearing hats a lot, air conditioning.
Thinks that help: Nizoral shampoo, eucerin calming scalp treatment, L'Oréal phytoclear scalp treatment (the spray), aveeno moisturiser, warm weather, not leaving too long between washes.

Can you pat for a private dermatologist? I have had a (completely different) skin issue for 8 years and ended up seeing a private dermatologist costing £350 after nothing worked and I saw immediate results.

Oh gosh you poor thing!
I'd research private dermatologists who specialise in psoriasis OP.
Good luck 🤞

@Pearfacebanana

There are a few that have been OK.

Healpsorin Scalp and Hair Set was pretty good, although it isn't cheap.

Cheaper ones:
Sea Magik
Dr Organic - Holland and Barrett

@Caplin

Thanks I've also found the Goldwell scalp specialist ok recently.

See a dermatologist. It's what they say it is, doesn't matter about what other healthcare professionals who are not dermatologists say.

Ask them about phemphigus.

I'm sorry. Vent away you deserve to

I’ve had psoriasis for 25 years @wetskin if I scratch my scalp and the scales come off that is exactly what my skin is like.

Red, wet and weepy. So def could be psoriasis. Has the GP offered you cocois ointment? Or a private dermatologist gave me a prescription for Etrivex shampoo. Worked amazingly but it’s back again now since finishing it.

I’m looking into handheld UVB lamps at the moment, they do special ones for the scalp and most are 30 day trials if you feel you’d like to try that. I really feel your pain though and good luck.

It was for quite some time, but it's available again now.

Also, Capasal is another coal tar shampoo very similar to Polytar, and available on prescription.

Op I feel for you so much 

the only thing I've thought of to try while you wait to see your dermatologist is light therapy.

You'd need to check which one is appropriate given the condition of your skin, but blue light, red light and infrared are all very healing for the skin.

While you can get face masks (expensive these days) which deliver, you can also get handheld devices which you could use on your head and I'd recommend focusing on one patch first.

Make sure it's not contraindicated with psoriasis but I believe (as a non medic) that light therapy is typically very safe for most people. You won't have uv exposure as part of it.

You can buy infrared lamps easily online or you can see if happen to live near somewhere that offers infrared saunas (few and far between still). Depending on your financial situation, you can also look up private clinics which offer light therapy as skin treatments.

Good luck x

Op - ive just had a quick Google search about treatment pathways and it sounds like there's still a lot the dermatologist can try. Phototherapy is one treatment for severe psoriasis but apparently there's a limit to how much an adult can have. While I would guess this refers to medical grade phototherapy as opposed to devices you can buy over the counter, it would be wise to check with your doctor first. Chase that dermatology appointment- ring the department and ask if they can keep you in mind in case of cancellations too. If you can afford to be seen more quickly by going private then do. Apparently Southampton hospital has particular specialisms in treating psoriasis.

I’ve had psoriasis for many years, and yours looks and sounds like how mine was at its worst. It’s not too bad when it does scale over, in the sense that the lack of scales makes it weep and really sore.
I often felt as though my head was on fire as the burn was unbearable and really painful to wash so I really feel for you.

You really need to see a dermatologist as there are many medications that can treat psoriasis, they usually go to methotrexate after topical and other meds if they’re ineffective, I bypassed the methotrexate and take an immunosuppressive injection weekly, my mother, grandfather and uncle also take the immunosuppressive injections, which come with other risks and side effects, but for me, that was worth it in comparison to the hell I was living in with the psoriasis.

Ive not had a single flake of skin shed for 3 years while I’m on injections, it soon reappears if I miss an injection, but, there are other treatments available

Dear me OP that looks dreadful. It reminds me of seborrheic dermatitis that has given me grief over the years. Used to think it was stress/food related and tried all the usual things to no avail. Over the past few years I’ve been using MooGoo milk shampoo & cream conditioner & this has kept it well under control (made in Aus & is available in UK if that’s where you’re from) Might be worth a try.
Meanwhile, sending you 💐 & hugs and hoping you find relief very soon.

If you need a full blood count
the good body clinic are excellent they have clinics in most main cities

i paid 69 for a in clinic FBC a few weeks ago
you can also pay a bit more for a video consultation with a doctor who will tell you if anything is off
you get the results by email within a 3-5 days inc weekends

So sorry OP. One of my DC was like this at 6yo, though not as weepy. I took him to a private dermatologist. She gave me a prescription to take to a compounding chemist ( they make things themselves) and he has been better ever since. Still washes his hair with tar coal shampoos and is prone to dandruff but nothing like he was. It was coming down his forehead before we saw the dermatologist.

That sounds really miserable @wetskin. Poor you.

Having gotten a diagnosis from a dermatologist and had all the tests, I think you're probably up to speed on the condition itself and treatment.

Are there any support groups locally? Can your GP suggest practical management techniques for dealing with it?

Wishing you well x

Actually I think a short hair cut might be beneficial. Much less weight pulling in the hair follicles of the scalp AND much easier to wash with just water too Of soap are the issue.

im actually wondering if scalp cleaning but treating it like a fresh piercing - boiling water with sea salt then allowed to cool for washing and just using that would help 🤔

.

That looks and sounds awful, @wetskin No wonder you’re at your wits end.

I was going to suggest seeing a Chinese doctor (CTM) for acupuncture and herbs. I found one after suffering from bad eczema for years and I saw an improvement in 3 days. Within a month I was considerably better. It’s never returned.

In addition to that, maybe taking a month to improve your gut will help. Sounds like those antibiotics will have mullered your gut biome. Try Biokult which you can get from Amazon.

www.amazon.co.uk/Bio-Kult-Boosted-Concentration-Original-Capsules/dp/B085MZ57DJ/ref=sr_1_5?crid=1TZE15B5LCQYC&keywords=bio+kult+probiotic&qid=1676009674&sprefix=Biokult%2Caps%2C89&sr=8-5

My scalp psoriasis was like this. I was told it was infected (hence weeping wet and open, it also smelled) and it needed multiple rounds of antibiotics to clear. Yours looks worse than mine did. Can you afford to see your dermatologist privately?

This looks awful for you. I hope you find something or somethings that help you control this.

I found this on a google search .... not all about scalp but maybe a few tips in there so might be worth a read. www.glamour.com/story/how-to-treat-eczema

I had a friend whose sibling family and she were very arthritis prone. Rest of her family went down the route of usual medications approach. She undertook a gluten free diet approach and after a period of time her aches pains and rhinitis type symptoms resolved. If she deviates they quickly return.

Also worth reading into (if not considered aready) is fasting ( intermittent) as an aid to address psoriasis. Some reports of benefits If not a panacea.

Good luck.