psoriasis?

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!

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.

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.

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.

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 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.

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

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.

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.

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.

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.

🙋‍♀️ 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 🙄

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

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

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! 😁

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

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.

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.

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.

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

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.

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

Methotrexate rocks

Have posters any views on the gut health angle?

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