Sick to death of psoriasis

[TeddyIsaHe]

I have finally been referred to a dermatologist and a rheumatologist so this is more a moan than anything else.

I’ve had psoriasis for 15 years and I’m sick, sick sick of it. It’s painful, unsightly, itchy and now in my joints meaning at 30 years old I can barely walk (not fun with a lively 2 year old).

I’ve tried everything except biological treatments. The only time I’ve been free of it was when I was pregnant. I have Guttate, scalp, plaque, nail, inverse and psoriatic arthritis.

Anyone else want to join me in venting about this bloody awful disease? Fuck psoriasis!

Well, I think you need to grab the positives from this, in that things can only improve now that you’ll get a chance to see the consultants.

It sounds like a truly dreadful condition. I hope that things improve for you.

Yanbu its shit. Even worse in the summer when everyone goes round in shorts and dresses while I'm sweating my arse off in leggings. I bloody hate it.

I need to go to the docs as one of my knees is incredibly painful atm with hip and lower back pain...yay

Yep, psoriasis at 20, arthritis at 26.

I bet you get, "you don't look old enough for arthritis' comments a lot.

It’s an autoimmune disorder, so I hear lots of success stories of controlling it through diet

Am elimination diet is the starting place

See the consultant and ask about Humira (adumilab). Ignore the bollocks about elimination diets, homeopathic quackery and other nonsense. I struggled for 15 years with light treatment, cyclosporin, methotrexate and in 3 months Humira had completely cleared the 70‰ coverage I had

mooncup I’ve tried everything, really. No dairy, no gluten, vegan, no nightshades, given up alcohol, a ridiculous green juice ‘cleanse’. Diet does f all. Even the strongest steroids aren’t touching it at the moment.

IWould thanks! I’m gathering together as much info as possible, so will talk about Humira as well. Sounds good though, did you have any side effects?

Seconding Humira. I've been on it for 6 years, no side effects (generally anti-TNFs don't have that many) and my skin and joints are 90% better. It's changed my life given I could hardly walk and was almost 100% covered before I started it.

Another one here sending hugs and sympathy. I have it too - developed out of nowhere about 7 years ago. I have now stopped all treatments because nothing worked. Just using non-petroleum based moisturisers.

I was diagnosed with Psoriatic Arthritis last year, I'm semi successfully controlling it with medication.

Obviously a healthy lifestyle is always beneficial but even if you do find a natural way to control the psoriasis / alleviate the arthritic symptoms, you need conventional medication to protect your joints from further damage.

Hopefully the rheumotologist will be able to help. Mine is very good and thankfully I've responded well to one do the front line treatments (Methotrexate).

In the meantime get yourself to the GP for pain relief. I have a 6yo, 4yo and 1yo and at my worst I couldn't walk. With kids you need to be able to function to some degree and I found Diclofenic (75mg, slow release) helped most.

Hi op, I feel you pain too. Mine's on joints also (knuckles, knees, elbows and ankles) I also have MS and the consensus is that it's linked in my case as it's another auto immune condition. The biggest unfairness for me is that despite sunshine supposedly being beneficial, mine flares when I use ANY sun protection. Dovobet (sp?) Steroid cream helps off and on though....

After I went on anti depressants when I had PND, my psoriasis improved a lot. I still have it quite badly on my scalp, especially in winter, but my body has been clear for the six years I've been on the anti d tablets.

Seconding @mynameiscalypso, I have had no side effects with Humira

Oh poor you. An ex of mine was soooo itchy because of the psoriasis. Thankfully light treatment lessens it for him for a while till it gets worse again. It also drove him bonkers that people were always telling him what fad to try next.

Me too. It's particularly bad this winter.
I've just had to come off all my medication due to shingles outbreak and currently trying to decide if to go back on it. Not sure

Totally empathise, me too. I was on Humira for a while before stopping to ttc and it was bloody brilliant, genuinely life changing. Being under consultant care is a game changer, good luck

OP it is rotten...my Dd 13 has plaque psoriasis but not arthritis. At its worse half her face was covered in it...no hiding from it and lots of stares and thoughtless comments. Is this the first time you have been referred to a dermatologist or first time for both rheumatologist and dermatologist? I took my DD to see GP every week for 6 weeks until her referred her to a consultant who was able to prescribe more effective treatments. Not sure if Guttate is helped by light therapy in the same way it improves plaque psoriasis but maybe that's another option.

My daughter also has scalp psoriasis which we have only been able to keep almost under control by rotating medication Betnovate, Sebco and Capasol shampoo.

We did find that at each visit to the consultant (over the course of 2 years) he prescribed stronger medication in the same way a GP does i.e. they start with the mildest and gradually increase strength. DD now has the strongest medication available and from what the consultant tells us as things stand there is nothing more he can offer for the scalp. He prescribed Synalar last week...haven't tried it yet, will wait for a flare up.

Protopic works well for body but again this is for plaque psoriasis. She was also given Exorex but found this really stingy so didn't use it enough to know how effective this might be.

I can understand why PP says theirs is helped by anti-ds, if their condition is stress related. My DD had first minor attack when switching primary school then major flare up when starting high school and getting her periods aged 11...too much to deal with all at the same time. The stress caused by having the condition itself is enough to sustain it but DD too young for anti-ds.

Good luck with the consultants. Come back and let us know how you get on.

I was diagnosed with PsA when DS was born 13 years ago. My Psoriasis usually covers the whole of my back and is cracked, sore and horrible.

I’m just coming to the end of a 10 week course of Phototherapy (basically a Sunbed but they take out the bad bits) and it has completely cleared my back! I’ve been going three times a week for ten weeks, so thirty sessions, you start off going in for seconds at a time, I’m now up to two minutes that’s how gradually they build you up.

You can only have this treatment once a year and there’s every likelihood of the Psoriasis returning but for now it’s great, I’d really recommend it.

I’ve also been using Enstilar foam and Hydromol emmolient Which has really helped too. The Enstilar is expensive and my GP was reluctant to prescribe it but my Dermatologist insisted and it’s really helped.

I have plague, inverse and scalp psoriasis. I was diagnosed at 3, so it seems a normal part of my life now.
But i fucking hate it. 24 bastard years of scratching and flaking and soreness.
Im always itchy and sore. Its horrid.

I have inflammatory arthritis in multiple joints. It started as dactylitis which led rheumatologist to believe that it is most likely to be psoriatic arthritis, though I don't have psoriasis. I do have crohns disease so they are tentatively saying it's enteropathic arthritis.

Regardless, he said the treatment is the same.

He says it's a hierarchy of treatment - started with sulfasalazine, added in methotrexate and he wants me on biologics but apparently NICE insist on trying everything else first.

The hospital is good though because I have hand therapy and they've made splints etc for me. Podiatry have made me orthotics, I'm having phtsio and hydrotherapy and will have pain management so there are treatments to support you.

I wish you well. It is miserable to live like this.

Have you thought about chinese herbal medicine?

Honestly i am the worlds biggest woo sceptic but I work in a related field with a specialist Medic and have seen some great results.

Psoriasis sucks.
I have scalp psoriasis. Builds in large plaques/scales and covers my entire scalp, very itchy, looks like I am in a constant snow storm and annoyingly is linked to stress... and I am v stressy type person with a high stress job. No hope!

I have been there, done that, and have only ever had light relief at times.
What does work for me though is Loyon - cradle cap treatment for babies. I apply (drown my scalp lol) and leave overnight and the scales lift and soften enough for me to simply wash and comb them out! AMAZING!

Now its part of my ritual - twice a month, a Friday night, glass of wine, movie and cradle cap oil on my head :D By Saturday I can actually touch my scalp... ridiculous but being able to feel my scalp without scales, sores and itchiness really is the MOST luxurious feeling!

It’s an autoimmune disorder, so I hear lots of success stories of controlling it through diet

I have yet to hear a single one, it makes no sense for a diet to treat it and I think the various consultants I've seen over the years would have heard about any successful clinical trials.

Also to be frank, PSA has taken away a lot of things I enjoy, I'm not giving up eating too.

Since it's not been mentioned, coal tar worked on mine (if you can get it anymore ?). You used to be able to get a cream with coal tar in it from the chemists in the 1990s and early 2000s which was a good help too. Unfortunately I can't recall the name - not that it would help, as it's disappeared without a trace (probably because it worked !)

(FWIW, I haven't had any flare-ups for over 15 years which is the source of an ongoing argument with my GP. They insist I have psoriasis after I went for loads of tests, but I don't think it is ...)

have yet to hear a single one, it makes no sense for a diet to treat it and I think the various consultants I've seen over the years would have heard about any successful clinical trials.

Well nothing you have done so far has worked but yeah, don’t even google psoriasis and autoimmune. Don’t be curious at all. You’d never find any evidence of it working. Never

Snap my psoriasis only ever gets better when I'm pregnant. Feels like I've use every lotion and potion going but nothing works. It's also my knees, elbows, ankles and scalp.
Agueros was your phototherapy offered through the NHS or did you organise it privately? Sounds great.