Help

Posted Sat 8 Apr 2017 21.40 by Joxx

Hi I'm new here, I'm 16 years old and suffering with severe psoriasis it covers every inch of my scalp, I use to have hair to my hips and now it barley reaches my shoulders, Psoriasis also covers every other inch of my skin and I managed to accept it for a while as there isn't a cure but I'm not doing so well anymore it's awful and really painful, and I didn't used to bother with how it looked but I'm starting to and it's taking away that side of my personality and I'm starting to worry is there anyone out there who knows how I can calm it down I've tried everything, light therapy, all oils, sebco , liquid paraffin , all creams and moisturisers but the doctor won't give me any medication due to my age and I've had enough. This isn't something I'd usually do so I'm quite worried but I have to give it a try.

Posted Sun 9 Apr 2017 00.14 by Betti

Hi please don't feel you are alone. We all post on Here as we all suffer the same horrible ailment. You are so young to have this. I was diagnosed last year with guttate psoriasis and have been struggling to get rid since then . It's been a terrible time but I'm much older than you so I feel for you. Have you tried salicylic lotion for your head? It helps to descale if you leave overnight.. Good luck. Hope you get better soon xx

Posted Sun 9 Apr 2017 02.10 by Joxx

I have family and friends but it's harder to speak to them if they don't have it, thanks for replying and i haven't tried that, I'm going to tho thanks a lot xx

Posted Sun 9 Apr 2017 12.55 by thin-skinned
Irascible septuagenarian fed up with the psoriasis constantly at me :wink:

I feel for you Jodie and I think your doctor is not playing fair by not prescribing. Ask your Mum to go with you and insist doc refers you to a proper NHS skin specialist. Hopefully, then you will receive the treatment to need and your life will start to improve. Good luck and please come back to let us all know how you get on :thumbup:

Posted Sun 9 Apr 2017 13.31 by pdr321 (edited Sun 9 Apr 2017 13.34 by pdr321)
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.

I really feel for you, I've been plagued with psoriasis for 27 years and I have tried everything, including taking medication/tablets. Last September, by accident I discovered something that has 'cured' me and I still can't believe it. My body used to be covered 80% with psoriasias and now I'm 99% free, I get the occasional spot here and then, but it doesn't last. What changed? I started eating blueberries every day with my packed lunch (before I used to go to the canteen). And in about about 4-5 weeks I noticed that my spots had gone by 99%. The only thing that had changed in my life was that I had started eating berry medley pot from Tesco's (it costs two pounds) which contained blueberries and blackberries. I'd always eaten eat any other fruit, but never these berries every day. I now eat 10 blueberries a day and I am still free of psoriasis six months on. It worked for me, and it's a natural approach, perhaps you could try it? I feel blessed as I have found a cure that works for me, and sometimes I can't believe it, because it's so easy, almost unreal. I also noticed that sugary snacks/drinks make my psoriasis worse, including sweeteners, so I tend to stay away from them.

Posted Sun 9 Apr 2017 14.10 by Joxx

When I first noticed psoriasis it was a small patch in my scalp for a year and I thought it was a scratch or something then it started in another place on my scalp and my mum took me to the docotors and nothing was done and I left it, then a year later without even a warning it started to cover my body and I then pushed so much for doctors I was told sweat rashes and stuff but I didn't believe it because of my scalp so kept going back to doctors and they put a referral to the dermatologist a month later i was completely covered and went back to see about the referral and they said it didn't go through so had to wait another couple of months, dermatology have put me on light therapy 3 times a week and I spoke to them about the biological treatments and was told the nhs wouldn't give me it. Because it costs too much, I went to the doctors before dermatology actually for depression and was turned away because of my age, they won't give me anything till I'm 18 so I just feel really limited and quite trapped with my options to help... So yeah I agree I think none of them are playing fair and I think my options are a lot wider than they are letting on. Thanks for replying. That honestly is an amazing story, who would have thought Berrys would have been the answer! I know everyone responds different to stuff but I definitely will give this a try, so happy for you that you are clear! Thanks.

Posted Sun 9 Apr 2017 21.59 by pdr321
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.

I really hope that blueberries (and blackberries I believe) work for you as well. It sounds too easy doesn't it, almost like a joke. When I think of all the angst, creams, visits to hospitals, doctors and consultants over the years. Then this simple miracle find for me, it's still hard to believe. I wore a t-shirt today because it was sunny, no way that I'd have done this before. Surely I can't be the first to discover the magic of blueberries? I posted much as I've said to you on this forum a few weeks ago, it got a couple of notices I think, but in effect vanished. I guess my experience doesn't seem credible, and when I read it back it is hard to believe. I sent an email to my consultant the other day, it will be interesting to see what she makes of my news. Anyway I really want this to work for other sufferers. I can understand your issue with depression, it is a depressing condition and socially limiting. I also understand why your doctor is reluctant to prescribe anti-depressants, in young adults they can have worse outcomes in some cases. I wish you the best of luck and hope that you see fast and positive results.

Posted Tue 11 Apr 2017 12.43 by Metarie1985
Beauty standard ignorer, unapologetic P sufferer for 10 years, determined to stay positive!

Joxx I'm heartbroken for you, I really hope you find some good people on this forum to share your stories with and realise you're not alone. I would encourage you to try as many different GPs as possible, don't take no for an answer because GPs are not well equipped to deal or understand Psoriasis from a physical perspective, let alone a mental or emotional one. You are perfectly within your rights to ask for a referral to help you deal with the emotional impact of P. I would encourage you to look into volunteer counselling services in your area - you should be able to self refer and although you won't be prescribed anything, it can really REALLY help to have someone to talk to once a week who won't try and give advice, they'll just let you talk. Many of these are paid for on a donation basis so you can pay as little or as much as you can. Don't let ANYONE tell you that you're overreacting by feeling depressed about your skin - no one who has had a skin condition would be so dismissive, Of course it will change how you feel about yourself. There is a hierarchy of treatment for P - they'll have to try you on UVB before any biologics and that's for your benefit. The medication they can give you for P can have some horrible side effects and I know people who have stopped taking them because the P was preferable. So don't be disheartened, you're on your way. Hopefully the UVB works but if not you're one step closer. I just wanted to let you know that it will get better. I'm 31 now and my skin flared at 19...I thought my life was over and I'd never have a boyfriend again, get my skin out in public or even be able to dye my hair. I've had a long term relationship, a couple of passionate flings (!) and some brilliant holidays in my bikini AND changed my hair colour 5 times in the last 6 years, all with my skin in various states of horribleness. You can and will live an amazing fulfilling life with this condition! There are great supportive people out there who will make you feel accepted and loved and they will be the best weapon you will find in your fight to accept your skin. I'm very glad PDR321 has had success with blueberries and blackberries but each and every person is different and what works for them may not work for you. Please don't get disheartened if it doesn't work for you. All the best - thinking of you!

Posted Tue 11 Apr 2017 16.30 by Joxx

Hi I honestly don't even know what to say to this post all I can say is thank you!! So much for taking the time to reply, it means a lot and I honestly speachless this post had honestly helped me a lot and I can't help you enough, all of them have and I'm so happy to be able to speak to people who know how it feels x

Posted Tue 11 Apr 2017 21.02 by Andly Lai

Hi Joxx, I've read all your words and these kindly replies. I really feel so sorry about what you are suffering now and I deeply feel that what our team is working on is definitely important, especially for patients who can't get proper and enough help from doctors alone, just like you! I'm a member of a patient self-education platform project team in Wharton School, University of Pennsylvania. And psoriasis is our entry point. We really want some advice and insights from real patients to help us to improve the patient journey so to provide treatment information and experience patients really want. Would you be willing to take part in simply by answering some questions from your position? Please reply me or directly email me if you want: qizhilai@seas.upenn.edu. Thanks and best wishes for you!!

Posted Thu 13 Apr 2017 01.29 by Holly1
Has psoriasis since 2001

Hi jo, I completely understand how you feel. I was 16 when I was diagnosed with psoriasis, it's hard to talk to family and friends sometimes as much as they care for you and want to help they don't always understand. You have done the right thing coming on here, speaking with other people with psoriasis has helped me so much just knowing that others are in the same position and sharing experiences really helps. What medication is your gp refusing? Are you currently under a dermatologist? If not I would firstly get referred to one, even if that means asking to see another gp if yours isn't being helpful. I was initially refused oral medication due to it affecting fertility however I have recently been prescribed cyclosporine I'm two weeks in and iv already seen some improvements, that might be a route you could take. Have a look at the treatment page on this website it gives you good information on this. I have been using dovobet and diprosalic which I have found has helped with the scaling side. To smooth my itchy skin iv also tried Dead Sea salt baths and sounds silly but putting porridge in tights and knotting it so it doesn't come out and leaving the porridge tights in the bath creates and creamy bath that leaves your skin feeling less itchy. I find both those methods really soothing. I hope you find something that works for you, please continue to use this forum we are all here to help each other so never feel your alone. All the best

Posted Thu 13 Apr 2017 01.33 by Holly1
Has psoriasis since 2001

Sorry no just saw your other message say you can't have it till your 18 I'm not sure if that's correct or not but well worth maybe having another referral and getting a second opinion. My friends daughter is younger than you and she is on I think it's call mexodrate (sort something like that it's an oral medication) I would maybe get a second opinion just in case. Good luck

Posted Thu 13 Apr 2017 18.12 by Joxx

Hi yeah I'm going to light therapy 3 times a week I was going for about a month and stopped due to a family member passing which caused my psoriasis to flare due to stress, I'm back again tho and feel that the day I get light therapy it takes a lot of the itch out but the days in between my skin feels really tight and sore, it's a really slow process for the amount of my body that's effected, I looked into biological but understand there a really big risk plus the nhs won't pay for the treatment, and my doctor did tell me any oral medication I was too young for so that's why I ended up at light therapy, I read on here sorion (not sure how to spell it) cream & shampoo is great for psoriasis and I understand not the same thing works for everyone but I've ordered it from Amazon and I'm going to give it a try, thanks so much for taking the time to reply, it really is a horrible thing and this website is great the only fault is how bad I feel for everyone else who has it knowing what it feels like :( x

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