Please help me feel less upset about DD psoriasis

[MrPianoManPlayUsASong]

I'm pretty sure DD, at nearly 10, has just developed psoriasis. Seeing GP this week.

I'm gutted for her, really gutted. Also catastrophising about what this means.

Please can someone tell me (kindly) I need to pull myself together and deal with this positively, tell me there are decent treatments and no need to despair. Please no horror stories - can't take it right now.

Sorry for being a bit pathetic, and thanks in advance.

I developed psoriasis in my forties. I used to spend 15 minutes each night putting cream on each individual spot. Then I had to wait for it to sink in.

Last summer, after a bought with guttate psoriasis, (which I apparently got after having strep), someone recommended fish oil.I have been taking it twice a day since and I have been spot free since then.

I was diagnosed with psoriasis at about the same age as your DD. I can honestly say it didn’t make my teenage years any more difficult. By then I’d got used to having it and going through adolescence I was far more preoccupied with everything else that was going on body wise.

As people have said there are various treatment options. I’ve been lucky and only had 2 severe flare ups (I’m now 36) and these were treated with a course of UV light treatment. My GP referred me to Dermetology. Had a variety of different steroid creams to manage it in between. Currently using a vitamin D cream which is really effective.

The hardest thing for me was accepting it’s a chronic condition and will always be with me in some form but this is something that has only bothered me as an adult. When I was a child this didn’t cross my mind. I liked having my creams put on every night as it was one to one time with my mum!

If your DD has psoriasis in her scalp then I’ve found coconut shampoo is a godsend for helping with itching - that was recommended by a hospital dermatologist. Nuterogena T gel shampoo is also really effective, as is Alphosyl.

It can be managed it is a matter of finding the right treatments though and this can be trial and error which is frustrating.

The psoriasis association website which has been mentioned is really informative and helpful. Lots of sun and moisturisers have always helped my skin.

My husband has it, and so does our son, it definitely flares up for both of them individually if they are under extra stress.

Husbands improved loads when he packed in alcohol, and learned to meditate.

Our son got his first patch just before secondary school, he panicked coz his dads was awful at that stage, i made no drama over it, religiously put cream on it and it didn’t come back for Few years, he now has a stressful job and always has it on his scalp, which he hates, his body I honestly don’t know I should ask, but it’s never been at a point of needing a doctors visit yet. But he’s handsome and a genuinely lovely young man so he’s never been held back of having attention from the opposite sex.

I am going to take advice from others on here re:- shampoos etc, thanks 👍

My husbands mum had it too, and so does his brother, definitely in the genetics there, no idea if this is common??

I have extremely severe psoriasis which I developed age 15. Actually no one was ever horrid to me about it! People do like to comment with their batty and non medically proven cure ideas though which I find deeply trying.
I use a biologic treatment after all else failed. These are becoming cheaper and more available, so however bad it gets there is hope for treatment.
I married a hot bloke btw and it hasn't put him off

i’ve had psoriasis since i was a child. it was on the palms of my hands and my elbows, which eventually joined together. i had light treatment in my early thirties which almost completely solved the problem.

my case is a little different as my mother refused to accept that i had psoriasis and would present me to doctors with eczema, which led to the wrong treatment being given for a long, long time. but then, my mother is a sociopath and you don’t seem to be, so i a, sure your daughter’s outcomes will be significantly better than mine!

i stick to non-bio washing liquids with unscented fabric softener - my skin gets worse if i stay with family or in a hotel as the bedding can irritate my skin. long pyjamas are the way forward.

i’m 46 now, and have been diagnosed with psoriatic arthritis for about 3 years now. i take medication to suppress it, but a lot of my joints are affected and i live with chronic pain. i’m not telling you this to make you worry, just to say that if at any point your daughter mentions joint pain, please mention it to a doctor.

life with psoriasis is ok, the treatments available now have moved on in leaps and bounds since my childhood. all will be well, OP. your daughter has a mother who is looking out for her, which will make things considerably easier for all of you.

Please be very aware of psoriatic arthritis, had I known about it I would like to think me and DH wouldn't have had DC. Seeing him suffer with it is horrid and he developed it in his early 30s

Sadly my youngest started with psoriasis when she was 2 thanks to incompetence of the GP failing to diagnose Perianal Strep for 12 months the dermatologist was very frank that her long term prognosis is not great as she developed it so young.

@randommess I hope your DC are shouting about their needs to their Drs and getting biologic treatments. I was unable to walk at one point but with biologic treatment you wouldn't know I had arthritis. There are also similar treatments for psoriasis on its own

I'm not sure Arthritis falls within the no horror stories' request from OP, particularly as you paint it so bad you would not have had children

@memorygarden

Seeing how badly my DH has and is suffering and that we have psoriasis in both sides of the family yeah I would.

It's an immunity related condition and there is no cure and all the treatment options have horrid side effects and limited success. Some of his fellow suffers are housebound in the early 30s with non of the drug options helping.

It's not a bit of "arthritis"

It's not a bit of "arthritis"

I never said it was

My point was OP asked for no horror stories and you posted literally the worst to the point where you would not have had children because of it.

At no point did I minimise Psoriatic Arthritis.

Key with PA is awareness and to know it is serious and know that early treatment makes a huge difference.

Any symptoms of PA take no crap from GP and insist on referral. Many GP aren't even aware of it.

So sorry my horror story is upsetting for the OP but really truly people need to be aware that staying healthy and being hyper aware of developing PA is very important.

Non of my girls have been bullied or picked on or "suffered" socially due to skin lesions. You can always tell when they are run down though as they start to appear and I they have us on their backs about getting enough sleep and exercise and eating relatively healthy.

Like I said OP asked for NO horror stories.

Yes but really information is vital, you need to be well informed. You can't pick and choose which details you want to hear.

It anyway OP I echo others in that keep on top of diet stress and exercise and it should be OK. Don't let anybody tell you it's only a skin disease.... Its not.

I think OP can pick and choose. She specifically asked for no horror stories on this thread

That doesn't mean she won't do her own research when she is ready.

I'll be interested to know what the doctor says, hope the OP comes back and tells us.

There is something called 'discoid eczema' which resembles psoriasis but is far easier to treat (it usually just goes away). I had it around my knees for a while, many years ago, at a time of great stress.

Someone above mentioned fish oil being effective for psoriasis; I'm sure it is. What is very effective for psoriasis and eczema is local application of evening primrose oil. It is an amazing healer.

Thanks again to everyone.

I'm so sorry to everyone who is suffering, or whose family members are

Just to explain why I asked (though totally accept that I cannot demand!) no horror stories... I'm very aware that psoriasis isn't just a skin condition - it's the fact that it's a life-long autoimmune condition, with potentially debilitating effects including inflammatory arthritis, that made me so upset on thinking DD likely has it. In my mind, the future started looking bleak. So I suppose I wanted to hear from real people who were living unbleakly with this. And about advances in treatment, etc.

Thank you again - I appreciate the time everyone's taken to post.

I'll update after the GP appointment on Thursday.

(and will keep checking this thread - lots of very lovely posts and it has helped)

I'm glad you are finding responses useful. Yes there are horror stories about every medical condition but there are increasingly treatments that do work. And not every one who has psoriasis will get the associated arthritis. And not everyone will have the most severe forms of psoriasis. Some will never have more than small patches. Some will have it for a while and never again.
I have them both but still had DC the stats from.my consultant say the odds are in their favour. But obv other posters don't agree on that one.
I would stay away from "support forums" for psoriasis as I found them to be "one upmanship" on who had it the worst btw.

Thanks again @SerafinaPekkalasbroomstick.

I read that there may also be new ways to deal with psoriasis (and PSA, and other autoimmune conditions) using stem cell technologies in a few years, so it may be increasingly treatable over time, as well.

Please do let us know what your GP says, MrPianoman; the first thing is to get a definitive diagnosis, your GP may have a particular interest in skin diseases (my old GP did, she was quite an authority), but an urgent dermatology referral is important.

Good luck.

Well, GP agreed it looks like psoriasis
Said she could refer to dematology but that it would be a 6 month to a year wait. So I've asked for a referral to go private as a one off. Looks like we can be seen next week, or potentially even tomorrow if we can get the letter in time.

Thanks again to all.

In the meantime, it's not actually bothering her much at all, so I'm trying to get philosophical about it... We have no idea how it will pan out (as with life in general - could get hit by a bus tomorrow, etc), and even if it gets bad it sounds like most people find some treatment that helps manage it fine. I've looked at some info on diet, sleep and exercise, which has given me some ideas and also reassured me that we were already doing lots of the "right" things (which is helping with my feelings of guilt that I might have done something wrong to make this happen. Feelings which are pretty pointless anyway).
Going to try to not make a big deal of this, as hopefully this increases the chances it will feel manageable to DD.

Thank you again for all posts.

Special thanks for all the positive and encouraging posts I particularly needed the other night (and continue to read!!).

Thanks so much for the update, Mr PianoMan. I'm glad you're taking your daughter to a dermatologist next week. If treatment is indicated the consultant will probably refer to his or her national health clinic for further appointments, they often do that and might even squeeze an appointment in earlier than six months.

Please continue to update.

Sorry your daughter is going through this. Google Protopic. Miracle stuff for eczema. I think it’s used for psoriasis also. It’s an immunosuppressant and so works differently