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!

Steroids are often prescribed when the body has got so over-stressed it's run out it's own natural supply. The best way back from this is natural balance. Have a look at your life and see what changes can be made so your body stops depleting itself.

I tried changing my diet and have been strict and tried cutting everything I could but nothing made a difference to my skin unfortunately! I know for some people dietary changes helped but for me it didn’t sadly, not sure what other changes I could make because it’s my immune system attacking my skin if I understand psoriasis correctly x

No advice on steroids, I'm sorry. I used to suffer with psoriasis from head to toe, the only thing that would get rid of it was daily light therapy at the hospital but it always came back.

I was diagnosed with bile acid malabsorption around 4 years ago and since I've been taking medication for this and adjusted my diet to very low fat the Psoriasis has not returned.

Just wanted to let you know about this in case it helps. I was misdiagnosed with IBS for 20 years and had to really fight for a diagnosis. It seems the psoriasis was flared by the bile damaging the lining of my large bowel.

So great to hear your skin is feeling better OP, I hope this is a long term solution for you x

I believe it’s your immune system pushing what it thinks are bad things out of your body (this can be certain proteins, antibiotics, etc.) via the organ of skin.

I know you said you tried diet changes - did you cut out “nightshades”? (Tomatoes, peppers, spices, aubergines) This was the big change for me. I now wear summer clothes in public! Tomatoes and spicy foods are a massive trigger for me. Also pork and dairy.

I'm on a low dose of steroids (5mg of pred) at the moment for psoriasis and arthritis. I will probably be on them 3-6 months while so wait for funding for a new biologic to come through. I don't think it's unheard of to stay on them longish term but I think most doctors are very reluctant because of the risks. I only got this course of steroids because I happened to be seeing my consultant on a particularly bad day and I couldn't actually walk up the stairs to his office. Has your doctor discussed any other treatments? While steroids may manage the side effects, I don't think there as good as other things at managing the immune response. My current dose of pred stops be getting worse and stops some of the associated fatigue/brain fog but it's definitely not stopping the inflammation, just masking the impact.

Steroid tablets I think are ok as a stepping stone to tide over until you start better treatment, but my dermatologist always winces when my rheumatologist prescribes them because of the risk of a psoriasis rebound when I wean off them.
I do love them though.

I wish people wouldnt push their snack oil cures on here though. It can make people feel as though psoriasis is their fault for not trying the umpteen different diet and miracle cream suggestions. I know they are only trying to help, but most of us have tried all that and it gets insulting.

I couldn't agree more. Every thread ends up the same. We've all been there and done that and for the vast vast majority of people, nothing other than medication will fix their overactive immune system.

If you see a dermatologist, ask about a steroid injection. They last longer and there isn't the same risk in discontinuation. It might also be time to consider dmards or other medications/treatments that aren't available through the GP - so do ask for a derm referral if you aren't already seeing them.

What you can do is take advantage of this period to use topical treatments to heal the skin as much as possible - emollient ointment every day, for example. Also be careful not to scratch, wear rough edged clothing or damage the skin in other ways. Keeping clean and moisturised is so important.

Ignore the magic exclusion diets and other nonsense - you are quite right that it's your immune system being a git. Eat healthily but normally and bear in mind that weight gain is common on oral steroids.

Flares are bloody crap, aren't they?

My husband suffers with psoriasis and we noticed it gets worse when he's ill and takes medication like paracetamol. Generally speaking, he should lead the lifestyle that boosts his immunity which means diet, exercise etc. Easier said than done, I know! Do you get big patches or rather spots? My husband's is "spotty" one, the worst on his arms. Also, it gets worse when he puts on weight. He likes using Tropic body pebbles, as he said it's the only thing that doesn't dry his skin under shower.

He was on steroids at some point as you were- it's very confusing to know what direction to follow when you're diagnosed, so they're good solution before you find out what works for you. Big hugs to you, psoriasis sucks. He was one of 5 siblings to get it from his mother.

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!! 🤐

I wish people wouldnt push their snack oil cures on here though. It can make people feel as though psoriasis is their fault for not trying the umpteen different diet and miracle cream suggestions. I know they are only trying to help, but most of us have tried all that and it gets insulting.

This in spades.

I've had psoriasis for over 60yrs. There is nothing I haven't tried, even the most outlandish of "cures". I've been a Guinea pig for new treatments and Dr training for many years. Nothing worked.

I'm on methotrexate now for RA, AS, PSA and the added benefit is that it clears my skin. I've just started Humira alongside the MTX and it will also help to keep my skin clear 🤞 Keep going to your dermatologist until you find a combination of things that work for you.

I think doctors should be jailed for prescribing this!! 🤐

What the fuck?

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!! 🤐

Clearly a stupid thing to say when you obviously don't suffer from it.

Just wanted to show my sympathy here as an eczema sufferer who was also previously on oral steroids. No idea about psoriasis but hope you find a long term solution. Skin problems are horrible.

Just to add to the conversation.. I have had this beast living with me for most of my adult life. I have had periods where I have been covered in it from head to toe (but never the face) and periods of remission where it just disappears and other times like now where I have it on my elbows, base of spine and underneath my breasts.

I have had light treatment which worked and it stayed away for years before it crept back and I sparingly use steroid cream on the itchy bits when it gets unbearable.

This is my story and nobody else's. I can't tell you what to do as this is my psoriasis and it lives within me like an old friend enemy

Yep!
"Have you tried..."

YES!! I'VE TRIED IT! I've been battling this fucking condition for 15 years, do you think I've not googled every possible trigger and treatment?

I find it hard to keep the annoyance out of my voice these days.

Does it really matter? At least it keeps the convo going as there are so many of us with this 'thing' living within our bodies. It's good to talk :)

I meant people that don't have it, sorry 😁

Yeah..lol.. my son does not have it yet he tells me not to eat dairy as this is the cause. I hear you !

www.medicalnewstoday.com/articles/the-link-between-social-anxiety-and-psoriasis
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.

Honestly I feel the same way as others when people suggest things like diets or lifestyle changes- I never want to be rude to them because I know they’re trying to help, but I’ve tried it all and it’s hard to bite my tongue when I’m talking about high strength steroids and someone says confidently that actually all I need to do it cut out milk/dairy/whatever and it will be fine. I mean, I’m grateful they’re helping, but also I’ve had this condition for a long time and I’ve tried all that! It’s great it works for some people but it’s made absolutely no difference to me and it’s slightly irking when people say its the only way to fix it or that it will definitely work

What irks me about it is when it clears up for a while (before it always returns - and it always does !) is that I wonder what I did differently to make it go away

.. and never know !

This.

I got so fed up of people trying to tell me their random 'cures' when you know you've already tried so much over several years, from being a teenager onwards.

If the miracle cures really worked consistently for the majority we'd know about it!

I had steroids occasionally but short term to deal with flare ups. Fortunately, although my psoriasis was very painful and sore, it was concentrated in certain areas rather than being wide spread.

The only thing that has pretty much entirely cleared it up, bar a couple of small patches occasionally, is the psoriatic arthritis treatment - not sure which one whether it was the sulfasalazine or the methotrexate, or even if just coincidence. But since taking them it's almost all cleared up.

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!!

I assume you don't live with psoriasis and psoriatic arthritis yourself?

Or that you have a wealth of medical expertise which explains why you think a bottle of Tropic lotion will work better than tried and tested prescribed medication to wow us with perhaps?