psoriasis?

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

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.

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.

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...

😂

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

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.

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.

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.

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

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

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.

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?

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?

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.

.. and never know !

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

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.

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

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

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 :)

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.

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

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.

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.