psoriasis?

[psoriasisstruggle]

My life is currently being ruined my psoriasis. It’s all over me and I’m red raw, cracked and bleeding.

I was prescribed by the derma this week a temporary course of oral steroids as the flare up is severe and topical steroids are making no difference whatsoever.

it’s already made such an improvement- hugely so compared to the topical steroids.

is anyone else on oral steroids for psoriasis? Are they usually given long term or only for short term? I really don’t want steroid tablets if I can avoid them as I know they come with their own set of problems, but for the first time in years my skin is better and I’m comfortable and not cracked and sore. I can actually walk about without being in agony. I can sit down without being in agony. I can get dressed, shower, do normal things without being in agony. Never mind the self conscious element of it.

I don’t want to get ahead of myself but it’s so much better. I don’t want steroids tablets if possible as I know they can be dangerous; but is it an option for psoriasis long term to stop it flaring up etc? Is it even safe to take it long term?

obviously it will be my derma who decides the next step but im not going for a review for a few weeks so just wondered on here if anyone has any knowsledge of this. I could cry with happiness that my skin is starting to get better!

Apologies for another possible snake oil cure.
I've suffered from fairly mild psoriasis since early teens.
Resolving my social anxiety has had the knock on effect of pretty much curing my psoriasis.

And yet you still did it?

Yeah. I did weigh it up though and the thought that I might help some people outweighed the irritation I might cause some other people.
Apologies again if you're among the irritated.

I need to apologise for not spotting my snack/snake typo!

My consultant gave me my life back with immunosupressants. I owe him a debt of gratitude.

What?! I have Psoratic Arthritis, and can barely walk with immune suppressants. I think my consultant should be knighted or something for prescribing this!

And it's not like it's not all explained with options and their possible side effects. And you are regularly monitored with blood tests etc - every 2 weeks in the first instance. If it's not working for the individual something else is tried instead.

You need to have a discussion at your next appointment about immunosuppressants. I too have Ps and PsA and methotrexate (the stuff a pp said doctors should be jailed for) and biologics have completely given me my life back.

ignore any rubbish about exclusion diets, yes have a healthy balanced diet, keep stress levels as low as you can but this must be done in combination with medication that suppresses your immune system to a more normal level.

steroids are not a long term answer, they’re great as a sticking plaster when things are out of control but shouldn’t be used as a long term plan.

Our friend also has psoriasis and he tried so many awful treatments, like tablets that lower your immune system (people get them before organ transplant), so his body won't react too much and there will be less inflammation causing psoriasis- I think doctors should be jailed for prescribing this!!

Yes, well. Try having an autoimmune disease that, left untreated, significantly reduces life expectancy. (My father dropped dead at 55 from cardiomyopathy due to the fact that he was untreated, there's a dramatically increased risk of myeloma, and a whole range of unpleasant or at the very least, deeply inconvenient ways to expire on average around 15 years earlier than standard life expectancy). And then there's the pain, the deformities, the other body systems that get attacked, the risk of staph infection in open lesions, the sensation of lava ants or hot concrete sludge in your joints, the spontaneous rupture of tendons or the splits around your vulva, arsehole or foreskin and bollocks. Oh, and the inflammatory-generated depression/anxiety that resolves without psychiatric medication (because that doesn't work on it) the instant the immune system is damped down to near normal levels - sobbing, suicidal ideation, pain, no energy, no sleep or never ever enough sleep, all lifts the second the inflammatory markers reduce. Feeling nauseous, having to use contraception and being careful about infection risk if the immune system shuts the fuck up a bit too much, but being able to exist as a relatively functioning member of society for a change is worth it for the vast majority of people.

But you'd like to make a treatment that can stop all of that illegal? Because you don't like the sound of it and a mate of your husband found it didn't work for him (hope he went onto Biologics and got some relief - can't go onto those without trying the DMARDs first).

You crack on with turning your nose up at it. We'll crack on with trying to get some respite by taking medication that actually revolutionised the entire area of study, research and treatment from 'oh well, you'll be in agony and die early' to 'you'll have a near normal life expectancy and actually be able to live for all of it', ta very much.

If my hands weren't totally flaring at the moment, I'd be giving you a massive round of applause @NeverDropYourMooncup

And I'd take a graceful bow, @mynameiscalypso , were it not for the Psoriatic Arthritis fucking my back over this week, meaning I'd probably get stuck and then I'd never be able to get the steroid scalp lotion out of my hair tonight...

😂

I hope this doesn't count as snake oil but I think it's worth mentioning, my psoriasis was triggered by a medication I was taking - it took 5 years and me randomly googling the name of the medication and psoriasis to find several peer reviewed papers demonstrating the link between the two. I appreciate this probably won't help most of you but perhaps it will help someone.

DH has suffered his whole life with it. Has tried every cream going. Finally, at the age of 40, he was referred to a specialist at the hospital and they’ve set him up with light therapy in the first instance, before going for the tablets. Just waiting for a date for it.

@NeverDropYourMooncup It's such a glamorous condition isn't it? 😂

Have posters any views on the gut health angle?

Going down the kefir, kimchi, sauerkraut, yoghurt etc. road?

My view is that it works for some people but for others it’s a complete waste of time. Not to sound flippant about it but no matter how much organic seaweed I eat, my immune system is still going to attack my skin unfortunately! I think everyone has a different response to it

😂

I heart my immunosuppressants. Given me my life back so there!

Methotrexate rocks

Absolutely - how can you not feel anything but glamorous when you slide into your vaguely flammable bed linen, your skin delicately and sensuously fragranced with the scent of dog shampoo/carbolic soap, and start making glorious, passionate love with your DH. with added mental notes that his feet feel like leathery cheese graters, there's a patch on his lower back that needs a dab of steroid - and he's also clocked a bit on your outer hip whilst attempting to position himself so that he doesn't irritate that bit in the crease of your inner thigh?

Sooooooooooo sexy.

They taste nice. But scabby and farting doesn't really add much to the romance in my life.

Oh you have my absolute sympathy.

I have had psoriasis on and off since I was 18 (30 years!). Stress makes it worse. Nothing makes it better. Then I was diagnosed with epilepsy, and my meds for that made it soar off the scale.

I don't know what to do. My GP doesn't doesn't know what to do. If I scale back my epilepsy meds, my seizures will come back. And so does my stress.

Honestly, after years of prescription and/or expensive treatments and oils and creams, the best thing I've found for me is Tesco Cocoa Butter. About £1.75 a tube. But I know it is different for everyone.

Another positive experience of methotrexate here. The day I had to stop taking it was terrible - I’m back to itchy cracking skin. I tried everything to get the doctor to continue prescribing it but he wouldn’t because I was experiencing side effects. I hoped that reducing stress when I retired would help but it hasn’t. Huge sympathy to everyone suffering with this - I don’t think non sufferers really understand how all encompassingly awful it is.

I think mine was a knock on from ulcerative colitis as both are auto immune conditions and since having surgery for that it's calmed a lot, but Charity Pot from Lush does seem to help soothe it when needed if that helps at all?

The drugs used to treat the UC would clear up the psoriasis as well for me, but I was generally on a high dose of Pred.

That's not snake oil at all. A number of medications are known to exacerbate it. I'm glad you found your trigger.

Fellow sufferer here 👋🏻 I’ve had it for around 7 years now and when it first appeared, I was absolutely covered (a very stressful event triggered mine 😫)! When I think back to the GP visit that diagnosed me, I have to laugh because he prescribed me a tiny 30g tube of Dovobet! 🤣 I now have 120g tubes of both Dovobet and Dovonex on my repeat prescription as well as a can of Enstillar (yes, it got that bad at one point). I’ve had UVB treatment and it worked whilst I was going 3 times a week but sadly returned as soon as I stopped. In 7 years I’ve had 6 months of being totally clear, following a holiday abroad. Sadly that ended when I needed surgery (I’d read that trauma to the skin, such as cutting it, can cause a flare) and I’ve never been totally clear since, despite having subsequent holidays abroad.

Here are the things I’ve found that have helped me;

1. Losing weight. I was 140kgs at my heaviest and since losing 45kgs (I still have a way to go!), my psoriasis has improved hugely. It’s now mostly just present on my arms, which I control with moisturising and topical steroids when it flares up.
2. Intermittent fasting. I did this to lose the weight (and keep it off) as apparently it is good at reducing inflammation throughout the body.
3. Water softener! I live in a very hard water area but last year went on holiday twice (in the UK so not sunny 😂) to very soft water area’s and was absolutely amazed at how quickly the skin on my arms cleared up both times! 😱 It was incredible, even just showering with my normal body wash, I came out with baby soft skin and didn’t need to even moisturise! Game changer (I would so love to move there, it would be so good for my health). So as soon as I got home from the second holiday I bought a water softener for my shower at home and whilst it hasn’t been quite as good as when I was on holiday, it has helped keep my arms mostly clear (just my stubborn elbows but they are still better than they were).
4. Probiotics as I do believe there is a gut connection (I suffer with IBS).

I too hate it when non sufferers keep suggesting ways in which I can ‘cure’ myself, my DM being the worst culprit 🙄 I can’t tell you how many times she has seen an ad on FB which claims to cure psoriasis with a cream of some sort 🙄 I’ve spent so much money on various creams that were supposed to help that I don’t bother anymore, I just buy any moisturiser that takes my fancy as I’ve never felt emollients have helped my skin at all. I also don’t want to give up food groups, I enjoy cheese too much! 😁

Myself and my daughter have it.
We tried Dermalex from Boots and for us it worked like a miracle.
The problem is , different things work for different people and sometimes a treatment works well for a time, then stops being effective.
However the Dermalex has not done so yet ( a year in0 but we try only to use it with flare ups. It sopped cracking and bleeding for both of us

Mines really bad at the moment , I'm sure mine is bad because I haven't had a proper sunny holiday in ages. I had light therapy when it was really bad about 15 years ago and it was magic , kept it at bay for years .
I wish there was a more accessible way of having it.
Going to the hospital three times a week, parking and walking miles of corridor to find the little broom cupboard really filled up my life for a while
Steroids are fine at a low ish dose for the short term , just don't stop suddenly as your body will have stopped making its own hope they work for you