Fuck psoriasis and eczema!

[Wintermarshmallow]

honestly, I’m fed up of it. Seriously- fuck psoriasis.

my scalp is covered in scales, plaques and thick chunks of skin. I can’t have my hair up because it’s so obvious. I’ve actually just woken up because I must have rolled on my pillow and my skin has all cracked open and my pillow is covered in blood now. A massive crust (easily 1 inch by 2 inches) has just come off my head and I actually feel like I’m shedding a whole new scalp.

im so fed up of it all. It’s embarrassing, painful, and an absolute dick to live with. I’ve grouped it with eczema in my title as that sounds horrendous to deal with aswell.

i’ve had almost every form of steroid available for it and no real improvement. I’ve tried every shampoo and am fed up with people in real life trying to be helpful by suggesting t gel, or asking if I’ve ever heard of a coal tar shampoo- no, that one must have passed me and my dermatologist by🙄 I know I sound grumpy and people are only trying to help and don’t mean to be patronising, but it’s so frustrating having people comment on it at all never mind suggesting things as if it will fix it straight away. It’s also really frustrating hearing people casually describe little bits of dry skin as eczema or psoriasis, i know in some people it can be mild dry skin but generally it’s not and I feel like some people don’t understand just how awful it can be 😢

arghh, I’m just so fed up of it all! Just needed a good rant and to get this all off my chest.

anyone else fed up with their shitty skin?!

Me too. Have had psoriasis for most of my life, now in my fifties. Nothing helps my scalp, although thankfully lesions on other parts of my body have gone away with steroid creams, but I'm aware they could come back at any time. I constantly look as if I have bad dandruff and can't wear dark colours because it's then very obvious. I'm fed up of people telling me to use coal shampoo - I've been using it on and off since I was a child and all it does is ruin my hair.

Ugh, yes! I have ichthyosis vulgaris and palmar hyperlinearity (the former is under control, the latter will always be embarrassingly obvious and no product changes it). The amount of times I've had someone say "omg, your hands are so dry, have you tried moisturising??". Lol, fuck off idiot.

I feel for you. Eczema sufferer here and the itching and pain can be agony. Wish I had a solution but sending solidarity.

'Have you ever thought about seeing a doctor for that?'

Aaaaargh.

(Psoriasis. 48 long bloody years, since childhood.)

Absolutely fuck psoriasis. I won't go into a lot of detail on the note private stuff because it's not my stuff, but DP has mild psoriasis in the grand scheme of things and it's just constant itch, discomfort, pain, bleeding, oozing, flakes everywhere, applying things, wrapping things, picking, peeling, trying not to pick or peel things, washing blood off things, trying to work out how to shave without ridiculous facial skin damage and pain (and leaving it unshaven isn't much better), getting prescriptions, trying new treatments and combinations of treatments and ways of washing and how much to wash and what sets it off and timings of treatments and different complicated regimes and different ones on all the different body areas affected which act differently and need different care… and that's with only a small percentage of his body covered, and not considered serious enough to see a dermatologist for (though he's never shown his GP all of it). And that's without the psoriatic arthritis kicking in — fingers crossed he never gets another bad flare-up of that, it bloody near broke my heart hearing a grown man cry out in pain trying to get up the stairs.

People have no idea how even at the mild end it can seem like it's taking over your life, and I only get a proxy version of it — I don't have to suffer the discomfort or psychological consequences myself. I would assume that when it gets more severe, this all increases exponentially.

*more private

My fave was someone telling me I’d scratched a germ into my hand. I’m 64 and had psoriasis since I was 16. I’ve generally given up on meds now. If it’s really bad I just use olive oil, petroleum jelly or lip moisturisers (esp for ears when they’re badly cracked). For cracks on the soles of my feet or splits I use ultra thin hydrocolloid dressings - my lifesavers. No one understands unless they’ve been through it. I’ve had everything including biologics, hospital stays etc. Once I’d come to terms with the fact it wasn’t going away and that I didn’t want to continuously have a rebound from whatever I’d been using I found it easier to cope with it. Commiserations though, it’s not easy to live with.

@FurryDandelionSeekingMissile commiserations for your husband. I hadn’t thought about the additional horror of shaving. I’m lucky not to be affected by psoriatic arthritis but I have a young relative who has been. It’s a dreadful disorder.

My husband has suffered for years with it badly on his face and in his hair however the one thing that seems to keep it at bay is enstilar it comes in a white tin and is a foam I think it's been amazing for him sorry if you've already tried but if not it's deffo worth a go it's been a massive life changer for him

Your gut lining (circa 80% of your immune system) is compromised. Gut dysbiosis (bad bacteria exceeds good). The result is you then get the overworked immune response.

Three steps:

1.Cut out all sugar (even fruits, starchy vegetables)
2.Probiotic (Kefir is a good one), that’s your good bacteria
3.Prebiotic (Inulin, of which Asparagus (raw, and put in a blender) is a good source), this feeds your good bacteria (imagine the probiotic is the seeds, well the prebiotic is the fertile ground..probiotic on its own achieves nothing without prebiotic).

Foods to eat...chicken, eggs, green veg. Small glass (150 to 200 ml) of kefir x 2 per day (morning and night). 2 large glasses (350 ml) of raw blended asparagus (or any inulin rich food) x 2 per day (take it first thing in the morning, 2 hrs before kefir, and then in the evening, again 2 hrs before kefir). Your main meal in the middle of the day.

With all this, exercise. Absolutely vital. Think of the above diet as washing powder, well it won’t work without the machine spinning. Your body can’t be sedentary and recover. You have to move. Optimise digestion. So stretching routine; especially important to twist your torso (it’s your colon you are basically targeting here, you want that moving without food just languishing in your gut). Do the usual stretches five times each (takes about a minute) and then after that do pretend skipping for a minute. So that’s 2 minutes, do that five times per day. You will then need to do two 15 minute exercises outside to get fresh oxygen running through your body. Ideally on a bike as there’s no joint pain (which can be an issue with psoriatic arthritis). If you can manage a brisk walk, then great. But key is not to overdo it. Exercise should be relaxed. Stress exacerbates psoriasis, so it should be minimised. Increasing your fitness allows for greater stress endurance (in other words, being physically stronger lessens the impact of stress).

And be sure to keep in contact with your GP through this.

Mmm the facial shaving is a bit of a conundrum twanmever, and something about which I have no firsthand knowledge so can only commiserate with him on! Luckily he's only had one really difficult bout of the arthritis, and was fine when younger — your poor relative, dealing with that from a young age must be tricky.

GrowThrough he has some creams and ointments with similar active ingredients but has never been offered the foam for areas with hair — thanks for the tip, I'll mention it next time he brings it up! (I try not to talk about the psoriasis unless he does, because my experience with childhood eczema was that the moment someone mentioned it, my ability to partially screen out the itching disappeared altogether 🤣)

I feel for you all dealing with this — knowing someone on the mild end is only enough to know how little I can truly appreciate how shit it is. Skin conditions and autoimmune conditions both get little understanding from the general public; when it's both? No chance.

Btw this is a temporary routine. You have to stick with it though. No cutting corners, no taking days off (and no sugar means no alcohol).

I could have written this myself! My scalp is particularly bad at the moment. No black jumpers or tops this Christmas party season - which is usually my staple! And I scratch so much I look like I have nits.

I’ve just come back from yet another visit to the dermatologist and I’ve been prescribed 3 monthly injections. He assured me this treatment would work but I’ve heard that before!

It’s just. So. Itchy. 😫

Have any of ye had your VitD levels checked? I have a health issue that causes low vitamin D levels. I have been supplementing with VitD and magnesium for a couple of years now and it's the only thing that really helps with my Psoriasis.

Just sending so much love! Mine always starts to ramp up in December. It is at its worst in the winter. For me sunshine is always so helpful.
I hope you do find something that helps. I found sebco ( I think that is what it was called), coal shampoos and properly moisturising gave some relief! (My hair was so greasy after and it helped to shampoo before wetting my hair and then washing like normal. Seemed to get the grease out better)! BUT what is so hard is that what works for one person, doesn't for another.
I do find that it flared when I have a big night out and so alcohol is a definite trigger but mainly stress and lack of sunshine for me.
Do you know what your triggers are or haven't found any?
Thinking if you

I've had guttate psoriasis since I was about five years old. Went on methotrexate twenty years ago and it cleared completely. Still have psoriatic arthritis but it's under control with methotrexate and biologics.

If you haven't tried methotrexate then it's got to be worth a try.

You have all my sympathy, it's bloody horrible.

I'm in the club too. Hate it.

Been diagnosed as Lichen Planus and lately as PRP.

Tried every possible cure, including diet. Nothing works.

The sun helps but I can't bear to be on the beach in a bikini cos people look at you with a red blotchy skin as a freak. I roll my eyes when so-called "helpful" ones tell me I am sunburned! as if I'm too stupid not knowing the dangers of skin cancer
I do let them know though it's not sunburn - I have it all year round!

I suppose it could be worse. I have a friend who has Lupus. You can die from that.....

It's weird, I'm in my 60's, never remember anyone having these types of skin problems in my teens or twenties. Could it be pollution?

Wow furry, WHO has told him it’s not bad enoughto see a dermatologist? That’s such bollocks. It sounds worse than mine. I’ve just started light therapy again, it’s on 95% of my body (but not bleeding) and I sort of keep the scale and crack down with the enstilar. Interestingly I just found out I won’t qualify for biologics (australia) as I respond well to light treatment. It’s just that I have to go three times a week, so now I take 4yo to swimming, go straight to my mums for lunch, leave 4yo there and take baby to dermatologists, she can just sit in the pram and my mum csnt really look after her for health reasons, have treatment, collect 4yo, do school pick up…. Swap gymnastics for swimming Fridays and maybe heading straight to basketball after school Ie that’s the rest of my day gone on Monday Wednesday Friday for the next few months. But I’m so sick of it, it takes me so long to treat it and it’s summer here now and I don’t want to bare my arms and legs really.

I have been plagued by bad skin my whole life , just on my face though , angry red blotches , scalp ' dandruff' . Nothing worked . Until I moved out of London .
For me I'm sure pollution was the cause . I now have no blotching and my scalp is kept at bay with Nizoril every month or so .
Unless you have a skin complaint you have no idea ,my whole life was dominated by how bad it was , what would it look like in the morning , how long it would take to cover up , no swimming , spa , facials or any activity where my concealers would come off . Truly awful

Ugh, that sounds really laborious deeper — it's great that it works well for you, but that's a hefty time commitment, and as you say you want to be able to get your legs out now. And with a 4yo and a baby, too.

It's not exactly that DP's been explicitly told it's not bad enough as such… it's just that the GP seems confident to continue treating it all with creams and ointments and refers to it as mild, hasn't said anything that would suggest they might refer, and DP hasn't pushed for a referral. He has other health stuff going on so psoriasis tends to take a back seat unfortunately, and I don't like to push too hard on it.

He's nowhere near 95% covered — the itching from that must drive you utterly spare! — but along with the patches that crack and bleed, he has it in awkward places all over, like inside ear canals, and the inverse(?) type in some places, so the discomfort and different kinds of treatment needed gets tiresome. I think it's technically mild clinically, though.

As well as being glad to find some people who know what living with psoriasis and other skin conditions is like so that I can support him better, I guess by listing out the problems it causes him in daily life I was kind of hoping that someone who knows nothing about psoriasis and maybe thinks of it as something like dry skin or bad dandruff, and who might read this thread, would hear that even the "mild" version isn't always a mild experience by ordinary standards. I knew a bit before this because of a family member, but had no idea of the sheer daily slog of dealing with it. Or the places you could get it.

Are you sure it is psoriasis? I have something very similar, awful flaking skin and chunks of scalp coming away, often leaving bald patches. I saw a dermatologist and had a skin biopsy, it turned out I have discoid lupus. It's under control now by using steroid scalp solution, SLS free shampoo and daily hydroxychloroquine tablets.

Hate to be one of the 'have you tried this?' voices, but I agree with Scott, it's to do with the gut. Anything topical/steroids etc isn't dealing with the underlying cause, so it continues. There are various gut health diets or protocols (you can also buy powdered inulin (not sure I could get on with all that blending asparagus!) but go gradually with it. Worth looking into. If you see improvements you might feel inspired to continue.

You should definitely see a dermatologist. When I saw one last winter she said that I would be eligible for the biologics that can be changed around until you find one that helps.
I opted for Phototherapy which was terribly annoying since I had to go three times a week for about 2 months but it did help.
It started coming back about 6 months later but at 10 months later it's still a million times better than it had been for years.

Have you had light therapy, @Wintermarshmallow? It was the only thing that worked for me. Available on the NHS.

Psoriasis is the pits.

One thing i do know that has helped my eczema hugely is making sure there is no methylisothiazolinone (commonly called MI) in any of my products. It's a preservative.

It's in a huge amount of shampoo,
Shower gel and washing powders.