If there’s one thing you would tell someone newly diagnosed with Psoriasis what would it be?

[SimoneHU]

For most people diagnosis throws up a heap of unanswered questions that can be quite bewildering. And the odds are most people diagnosed won’t know anyone who has had Psoriasis to get the ‘birds-eye’ view of what to expect going forward. Look back at your own experience and try to think if there’s anything YOU would have like to have been told.

[Hidden]

Having suffered psoriasis on my legs and now feet i would say best advice is not to scratch it.

I know its harder than said BUT i had help from my cat every time i went to scratch my legs feet I would find my cat attacking me

[Hidden]

Be prepared for greasy treatments, unsympathetic doctors and nosey people asking what is wrong with your skin or if you have dandruff.

Expose yourself to information, live as healthily as you can and be positive.

For the bad days have the right outfit for cover ups so that you can be comfortable and therefore confident.

[Hidden]

The one thing that has helped me is not, on the face of it, the most cheerful. And that is accepting that psoriasis does not seem to be curable. But ..... there are loads of all-important 'buts': it can vary hugely in severity, even in one individual, it can go into remission for years, just when you think you can't handle it anymore it might suddenly respond to treatment and improve rapidly ..... there's always hope and treatments are always improving too.

[Hidden]

This is a hard question for me as I've has Ps since birth so known nothing else, it has ebbed and flowed to over the years, never completely gone away. However I would say that stress plays a very important part, and to limit it wherever you can. The itchiness is at its highest then along with the spread. If you cut or graze yourself you'll likely get Ps there afterwards. Find a very good hairdresser they will give you the confidence to have your hair washed and cut especially if your scalp is full of it.

[BonnieSue]

Psoriasis seems to come in many degrees of discomfort and distressing appearance. I've been one of the lucky ones. My psoriasis has been mostly in my scalp, hidden by my very thick hair. I didn't know what it was for years and years. I just knew it itched. Somehow I gravitated to coal tar shampoo that got rid of the psoriasis for a couple of days at a time. I covered the awful smell with a nice smelling shampoo right after the coal tar shampoo. I had to wash my hair every 3rd day or suffer from itching and flaking that could result in bleeding. Not much of a problem at all compared to what other people go through.

Regularly I'd get a reddish spot or two with some white skin that would peel on my face. I had a prescription of Desonide cream for that. Still not too tragic. Now that I've learned to relax quite a bit more than in my old days where I was far too stressed out, my psoriasis seems to have vanished from my scalp completely and I have only the rarest spot on my face. I'd say I am an example of one of the most fortunate people to ever have psoriasis.

[Kriek77]

I would also have to admit that I'll say, it's very hard to accept but psoriasis can be managed but there is no cure. Find the things that work best for you, not everyones psoriasis is the same.

[BonnieSue]

I forgot to mention that for plaque psoriasis, if you can take a good dip in the ocean, you can reduce the severity of the plaques. I only know this second hand. From the site called "Everyday Health" I found this information: "Add Dead Sea salts (or Epsom salts) to a warm bath and soak for 10 to 15 minutes. The salt helps to soften scales so that they'll fall off more easily. Be sure to apply moisturizer after your bath. " This site and others have many other suggestions that may work for plaques.

[Mahnamahna]

Never apologize for being somewhere just because someone is uncomfortable looking at your skin. Rehearse some comebacks or practice standing your ground if you have to. But you're a human being that has a hard enough time as it is, never start apologizing and feeling guilty or ashamed.

[Chrisy]

Get yourself referred to dermatology ASAP, GPs don't usually have enough knowledge to prescribe useful solutions and I messed about for years like this until I was referred. I am now on a fumeric acid esters scheme and have had clear skin for more than 3 years.

[KarlaM]

I have suffered with Psoriasis on my arms and legs for about 18 years (it has varied in severity over the years and I have been prescribed lots of different lotions and potions). This biggest thing for me has been changing my lifestyle and being aware that Psoriasis is an "auto-immune" disease where the body attacks itself. Main things I have found affect mine are through diet and stress. I have started a wellness blog on this very subject which highlights what I have done to manage my Psoriasis (thelittlewellnesspatch.com/... which some of you may find useful.. I have listed my skincare routine on my last post. Would be great to hear from you to find out if you have tried any of these things or if something has worked for you too

[Zako]

Firstly I would say, I hope it's not severe and not to worry because it may be that you have less severe psoriases which is just on and off like most people and see a doctor regularly to keep track of your conditions.

Having been affected with severe psoriases most of my life which has now turned to psoriatic arthritis I won't lie to you it has been one of the most challenging things I have had to deal with. But I have still done most things which I thought I would never do because of my condition. Do research and stay healthy. Eat well, exercise and drink lots of water whilst taking prescriptions your doctor is giving you. If you feel like things aren't working for you must make them aware of this too.

Most of all live your life and try your best to be happy.

Ok that wasn't one advice but if you can take one thing from this and let it have a positive impact on yourself that would be awesome.

[lotsoissues]

that it should be called psoriatic disease and not just psoriasis.....I believe it will come out in the future that even with just plain old psoriasis there's other things going on in the body.

[Seahorse02 in reply to lotsoissues]

Totally agree!!!

[Tambrind]

You don't have dandruff and there is no cure, it will take a lifetime of care.

[Hidden]

I would tell them to use the mildest treatments first and avoid all of the harsh ones for as long as possible.

Know that your psoriasis will come and go over the years and sometimes you will have normal looking skin meaning you can wear the clothes you want.

Remember that the more you use steroid creams or resort to harsh drugs there will be a price to pay later in life. when you are younger with good skin it doesnt seem to mattter but as you get older the skin thins and loses elasticity even more so with years of steroid use. Avoid steroids like the plague and please keep them off your face because once the damage is done it cant be repaired not ever.

[polarcub]

I've had severe Psoriasis (head to toe, and arthritis) for 15 years.

I want to tell someone in my position when it first started - That's it's ok, you'll feel embarrassed and depressed, but you'll get past that - You will get to that point that you can hold your head up high, and ignore the comments flying around you.

Change your wardrobe now - get rid of the blacks and dark purples (even though you love them) - It will make life easier.

Get a pretty set of crutches sooner and a blue badge sooner - it WILL make a lot of difference.

Stop trying to be supermum - let the little things slide. Life has changed overnight, and no it won't be the same again, it will just be different that's all, and that's ok. Ask for help. Accept help.

Get a gp sooner that gives a crap and understands and is prepared to work with you. In my case - no Mr Gp - my psoriasis won't disappear in a couple of weeks - stop looking baffled that a bit of emoillient hasn't made it all better.

Other people will stare at you, and make ignorant comments (my psoriasis also affects all my arms/hands/face badly, so I can't cover it all) - hold your head up high - you have NOTHING to be ashamed of.

Be prepared for others with mild psoriasis to say 'you just need this cream' 'you just need a couple of light treatments'. Be prepared with something like - 'I'm pleased that ....... worked for you. Unfortunately I've tried that and it doesn't work for me. We all have a different journey in this disease'. They are trying to be helpful and not hurtfull. They don't understand that you have this said to you 50 billion times.

Children are the most accepting of people looking 'funny' or walking 'funny'. They are also at times are biggest advocate. My son has told others off for staring and for making rude comments (my son has Autisim, and has no embarrassment about speaking back to others and telling them point blank that they are rude, and that's not allowed). Don't tell your child off for defending you - give them the words to educate others politely.

Also a note to GP's - Some of us have really severe Psoriasis that no treatment (so far!) will improve it or make a dent in it and we will still have severe Psoriasis. Please refer us to Dermatolgy sooner. Please be prepared that we WILL be upset (heartbroken) that yet another treatment has failed. Please also see that this affects EVERY part of our life and we need support from you.

For everybody with Psoriasis - You NEED to take extra folic acid. We use up folic acid in the regeneration of skin cells - so if you have severe psoriasis then you will end up anemic (and because it's not iron deficiency, it will baffle GPs, and you'll end up ill for far too long).

Educate yourself about this condition - read about EVERY treatment, read the research, talk to others, be prepared to argue your case for different treatments, know what the side effects of treatments MAY be, so that you can prepare yourself. Make a point to understand your blood test results -it's YOUR body.

From someone living through 15 years of head to toe psoriasis and arthritis - who has tried every cream/lotion and potion, light treatment (both UVA and UVB), methotrexate and Humira. But don't let this scare others. Unfortunately I also have lots of allergies and a body that is determend to get lots of autoimmune diseases and to get every rare side effect going. I wouldn't change anything about my treatment choices and would do it again.

[jax553 in reply to polarcub]

Hi, Polarcub, I have had severe Pustular Psoriasis, as well as the Psoriatic, Arthritis for 20 years, I have osteoarthritis, I have acquired Diabetes, due to long-term steroids, I have Airways Disease, too, It is awful that all this treatment does not work, It is about time they found something that does work, I don't want to be left behind again, I had not seen a Dermatologist for years because there was nothing more he could try, I was left until recently when I risked a hand operation, to help with a nerve compressed and Carpal Tunnel, I have since been in a really bad flare, It has gotten worse, The Orthopaedic Surgeon, gave me a rollicking, because I dared to ask for a new knee, even though I had been referred, He told me that If he sees one single plaque on my hands and feet he will send me home, If he sees one single cat scratch he will send me home, Is it my Fault? I sometimes wonder I am hitting a brick wall, no matter how hard I fight, it is wearing me down, At last, the silly dermatologist is, referring me to a research Specialist Dermatologist, who can give me biologics, and I can then hopefully try out the Medicines that could essentially, help with my condition, Mostly those who say the worst comments are from the medical field, I do try and let it go over my head, but, when you have this said over and over for years you do start to believe what they say, It is like a brainwashing effect, and it is hard to get over that, people can be so cruel, I have been treated like a Leper, and I did believe I was contagious so hid myself away, as for holding my head up, that only gets me noticed, I am not sure I am ready for that just yet, The thing that got me the most was, when, I asked if this disease, was contagious, and was told no, But It does spread, here I am looking like a person who has just lost their last 50 pence, It has spread from the bottoms of my feet to the sides of my feet, I told my dermatologist and all she said was, yes but where are the blisters, I see only hard skin, I will scream, at her, and tell her how ingorant she really is, Hard skin my foot, { I did a funny} You can clearly see where the disease is active by the Pustulers begining to dry out, not that it is a pretty site, and yes my disease is as active as ever, Makes me want to scream at her, For goodness sake woman, look at the state of my feet, I asked why the Feet were so hard to treat, and she did at least give me an explanation, so I am really glad she has referred me to another More educated research Doctor who has more to offer than some Hospital Doctor.

I do want to live a better more fruitful life, My diet is rubbish, I am never hungry, will only eat a little meal, and will leave that, I know I have an eating problem, I just don't like food,

Maybe that is to do with whatever ails my hormones, I had a Tumour in 2014, and have since gone off food, because my mouth is dry, even with the artificial spray from my GP,

I am so glad that I am now free from that part of my life, This is me, this is who I am, and this is my life.

[roconnor]

I have my psoriasis under control and nearly gone ( I know it is no way a severe as many other People , I have a 3 inch by 7 inch patch on my right leg) I control it with my diet , This works for me ::i do not eat gluten , I have cut down lots on sugar and alcohol and try to get some decent sunlight .. I also eat lots of garlic and onions , all this helps balance my stomach which helps my psoriasis

[Seahorse02]

Insurance is a must. Stop scratching and picking - it only makes it worse. Don’t believe every dr just because he is one, and some are just stupid or jerks, or stupid jerks. Find someone to talk to if the psoriasis is bad and makes you cry - even if that person you talk to charges by the hour. Expect silly looks and silly statements. Buy stock in Vaseline. Find a clothing store that sells cotton garments and 3/4 sleeves. Get a good lightweight vacuum cleaner. Don’t wear black.

[jax553]

Hi, SimoneHU, I would say, make your Dermatologist work for you, Don't take no for an answer, and if everything is ok, ask about trials of new drugs. Take no notice if people are cruel.

[Hidden]

Two things actually...1. Prioritise comfort with clothing. I pick soft material and when my skin was bad I needed long sleeved tops that weren't too heavy. So comfort first, no scratchy material and nothing too tight and uncomfortable. x

2. Be honest.

As well as trying creams, treatments etc be honest with yourself if something stops working. I've caused myself a lot of stress by persevering with a treatment when it was no longer working I've had creams, UVB light treatment, UVA with psoralen tablets, methotrexate, Apremilast and now on Imraldi biologic which is going very well. I can wear shorts and tee-shirts but I'm keeping my long-sleeved lightweight tops...

...

When treatments stopped working (as they sadly can do, I assume the body just gets used to them) I found it hard to accept and kept going when I should have phoned my NHS Dermatology Dept for a quick appointment. Once you're in the system it can feel like a bit of a merry go round but there are good treatments and a good life to be had. You can build up a good relationship with dermatology nurses over the years and as previous poster said, use them.

...Just get ready to accept when it is time to move to next treatment and tell them. (though I've stuck with my trusty Dermol cream throughout) Consolations? There is no denying it is a horrible, distressing skin condition and we would rather not have it- but you will become a kinder person and you will develop great empathy for others. In desperate times I find a cool bath with Epsom salts is soothing. Good luck. x

[Rosedail]

I was 12 years old when I was diagnosed with psoriasis and now I’m 62 so…I’ve lived with it for 50 years and I have never been totally clear over those 50 years. Over the decades I’ve experienced what I refer to as “wall-to-wall” psoriasis on my back and scalp and elbows and even my face with very little clear skin as well as several different types of psoriasis. However, the good news is that as I’ve gotten older it’s gotten so much better and the symptoms are mild. When I was younger I did not have the option of biologics (not yet developed although I donated skin tissue for the researchers) so my treatments have been: topical steroids, steroid injections, various types of UV therapies, etc. But in recent decades my symptoms are so mild, I don’t qualify biologics. I would guess that most of my friends and neighbors have no idea that I have psoriasis.

There’s alot of great advice here and I especially agree with those who recommend getting the best physician you can find, starting with less severe medications, eating the healthiest diet you can with reduced gluten and very limited alcohol, get enough sleep, etc. So I will take a different tack with my advice: Above all be good to yourself! I see my psoriasis a bit like the “canary in a coal mine” and even a bit of a gift. When my symptoms flare up it’s a warning that I am not living as healthy a life as possible and it’s time to re-evaluate my choices and my circumstances. Sometimes the cause is totally out of my control (or the cause is a total mystery) and in that case I just have to forgive myself and be good to myself and be patient. At other times I have let life get out of balance and it’s time to make some real changes which might even involve giving up a toxic relationship or a job that’s too stressful or moving to a new wonderful place or take a big break from news and social media! When you get in the shower or the bath, don’t get frustrated with what you see. This does sound corny, but thank your body, especially your skin, and tell it that you are going to take good care of it! You will sit in the sun sometimes and dig your toes in the earth and appreciate the wind and do whatever you need to to make your body and mind feel better. This body of yours is a freaking miracle so you love it and care for it and forgive it when it gets out of whack. That’s my best advice.