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!

🙋‍♀️ another hand up for immunosuppressants, I have been on methotrexate for about 10 years and it really changed my life for the better.

I was covered head to toe in psoriasis, had two different types of it and was in permanent agony with it and so self conscious and now all i have is a small patch of it on my back.

Doctors should be jailed for prescribing it? Pffft obviously someone who has been very lucky to have no idea what they are talking about 🙄

Immunosuppression here, for PSA, not methotrexate or sulphosalazine.
Apremilast. Don't know how much it does for the arthritis but it keeps my skin clear.

I don’t have skin psoriasis, but my dad did as well as PsA and later UC, and now I’m possibly having symptoms of PsA in my early 30s. I’m having some MRIs soon so I’ve been told not to take any NSAIDs beforehand and I feel like I’m falling apart. Shoulder in agony, can’t undress properly or reach for anything. Struggling with my hands and feet and the throbbing sometimes keeps me awake. Both knees causing problems today, struggling to straighten/bend them after they’ve been in any one position for 30 seconds or more. It started in my late 20s but was taking isotretinoin at the time and put the stiffness and aches and pains down to that, but it never went away.

I have a chronic gynaecological condition and I get so tired of the comments about diet, snake oils and trauma. The Body Keeps the Score is a great book but I feel like it’s triggered a whole new wave of fuckwittery, people talking about how all autoimmune conditions stem from trauma or anxiety and going on as if they’re experts in the field.

Sorry to hijack the thread but for those with PsA, were your initial symptoms erratic? My shoulder always hurts and my knees, wrists and hands are very often stiff, but the throbbing/aching seems to attack different parts of my body at different times. I’ll have 2-3 days of my finger joints and wrist throbbing, then it will ease off and it will be my knee or my feet next, then I’ll maybe have a day or two where I only have the usual shoulder pain. It’s quite confusing.

So very sorry you are sore. I'm 66 and I've had it for forty odd years since my parent's divorce, it's a PIA and I hate the greasy grind of it. Also hate the constant hoovering.

I use different creams all the time, currently on E45 again, I have to rotate them.

I hope you don't have any side effects from the steroids and they soothe it for you and you can relax a bit, nothing worse than the cracking and bleeding.

@psoriasisstruggle I didn't mean food, I meant life stress/ family history etc

They used to be much more generous with steroids. My grandmother took them every day for many years for polymyalgia and lived a good active mostly painfree and long life. Younger relatives are not 'allowed' them for more than short courses and their lives are dominated by illness.

Not sure why they are so bad long term, or why medical thinking seems to have changed.

You don't need to apologise for anything. Ignore that PP. You were speaking from personal experience which we are all entitled to do. I'm glad you resolved your psoriasis!

The problem is with non-sufferers who read one article on Facebook and then tell us "you just need to..." as if it's a surefire cure and as if we haven't already tried cutting dairy or using Child's Farm lotion etc.

They have their own issues, particularly over lengthy periods - discontinuation can become a medical emergency, skin can become thinner, bone density can be an issue, risk of over suppression and vulnerability to infection, that sort of thing. It has to be a careful weighing up of risks vs benefits. Intramuscular steroids are less risky but cost far, far more and aren't always necessary - they're great to tide you over whilst waiting to start other medications or knock a flare on the head as quickly as possible.

My psoriasis appears to be linked to hormones and stress. My first flare up happened just after I had my first baby and was experiencing some horrible events in my personal life. Every pregnancy since then it has completely cleared up, reappearing a couple of months after I give birth. I did have some success with topical steroids but my new GP won't prescribe them. He is insisting I just use hydromol. My symptoms at the moment are fairly mild so I've just chosen to live with it. It's just started on my scalp though in the last week which is really irritating and sore.

A post pregnancy flare is a fairly universal thing for autoimmune diseases - the fact of being pregnant means a woman's immune system is less 'active' due to the need to not treat the fetus as an alien invader, so disease activity is very low. And once the baby's born, the immune system ramps up to the biggest flare in the world shortly afterwards - I wouldn't be surprised if it's one of the drivers behind diagnoses of PPD due to the inflammation-brain & mood link they've now identified.

Good luck to him. My husband is currently undergoing light therapy - it's been about 7 weeks now. There's been a slight improvement but nothing drastic yet and still getting new spots appearing on legs and back.

It's such a constant thing to live with. We've also heard of every "have you tried..." theory and I have come close to snapping at some people. My DH is incredibly healthy, eats so well (far better than anyone else in the family!), gave up sugar about 12 years ago, drinks very little, runs, cycles, lifts weights, isn't an anxious person or depressed... he has an autoimmune condition. Switching to oat milk and meditating isn't going to solve that!

This is absolutely one of my symptoms. I seem to remember that PsA is much more changeable like that than other forms of arthritis. I have a couple of joints that always hurt but otherwise, it's always a delight to wake up in the morning and discover what's going to hurt that day. I also find that different flares impact different bits of me - my current flare is more tendon related rather than joint related which hasn't happened before.

Ahh thank you, I haven’t been able to find an answer online so that’s really helpful. Sorry you’re in pain. I get tendon flares in my thumb and sometimes my hand, which I have at the moment… like a sharp pain when I grip something or put pressure on it. It made me think of my dad with his trigger thumb and carpel tunnel, which apparently can be caused by PsA. it’s rubbish.

Another thing I’ve noticed is that pain tends to be exacerbated with damp cold weather, which we’re having a lot of at the moment of course..

I feel bad, I’m sorry! I read your first post and winced remembering the burn. I tried all the medication too in my 20s, moved on to diet and it took me 10 years of reading and experimenting to eventually figure it out and change my life. I would love to do the same for a fellow sufferer. But I completely understand your frustration as you didn’t ask for that. Apologies.

^ I mean OP’s first post

Methotrexate worked for me. And just being outside in the summer.

Mine started with my fingers.
The first major flare up was one knee.

Even now, several years later and in regular medication, it's still erratic. The medication is reducing the risk of permanent damage to my joints and I get less swelling, but I get pain regularly and stiffness.

Almost all of my joints are affected at different times: fingers, wrists, top of neck/shoulders, elbows, knees, angles and toes.

At the moment it's my hands and wrists causing me the most pain.

I never really expected it to be different joints and different times, with no real pattern. You hear people have arthritis in x joint. But for me it's never been consistent. My consultant said that PoA doesn't always present in the way other forms of arthritis does in this sense though.

My best natural aid is sun and warmth - I love being able to get a week or so if winter sun as I get a lovely period of relief in the middle of the cold winter here.

Definitely affected by the cold wet weather here. My pain levels work like a barometer!
Consultant says that whilst there isn't really any definitive evidence for it to be affected by weather his anecdotal findings certainly points to it with his patients.

I’ve had it 25 years. Only time it completely cleared is when i was pregnant (which will never be happening again 🤣) it also massively reduces when I’m on holiday in the sun.

I’ve had every potion and lotion under the sun. Every steroid.

Some of the best over the counter treatments I’ve found.

Capisal shampoo (Amazon)
vitamin e oil - rubbed in my skin after shower (Amazon)
retinol vitamins (My protein)

This is my last bad flare up. After I’d been ill with tonsillitis. Took months to get that under control. I had it everywhere. Including in my ears and up my nose and on my face 😳 every time I get ill it flares up like this. I dread getting a sore throat as this always follows.

Mine's like yours danni0509, I've also got it on my elbows, a bit on my upper arms and my stomach is a map of the world - according to my idiot of a doctor. I hope your sore throat goes quickly and this flare dies down.

Thank you @Abraxan, that’s good to know. It’s interesting how erratic it is. I’ll just have to wait and see what the scans say. Hands and feet first, knees another time and presumably shoulder is going to be separate too. I haven’t noticed much swelling at the moment but the joints are hot to the the touch when they’re aching.

@danni0509 that looks so sore

Does anyone get psoriasis on their hands? This is supposedly hand psoriasis which doesn’t seem to be the classic silvery plaques. I get flare-ups of something that looks very similar once a year/18 months on one hand, but I thought it was eczema. The last time it happened my palm and between fingers were raw and I lost all my cuticles on my right hand which affected my nails. Took ages and lots of topical steroids to clear up.

@FuckFuckGo I've had that and on the soles of my feet too. It's mainly calmed down at the moment but it flares up and down a lot.