British Skin Foundation - Psoriasis

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Diagnosed at 3 years old and still have it at 28

Postby Guest Posts on Tue Oct 16, 2018 9:46 am

Hello,
My name is Lindsey, I am a 28yr old female.
I was told by my parents that I was diagnosed with psoriasis at a doctor's surgery at just 3 day's old. They say I was born fine and in those first 3 days I developed what they thought was a really bad nappy rash which then moved and covered my entire scalp while simultaneously clearing up on my behind. It remained on my entire scalp for 7yrs with no remission whatsoever and no change in severity.
Then the psoriasis moved from my entire scalp onto my entire right cheek on my face also onto my left lower forearm from wrist to elbow and also onto my right lower leg from ankle to knee again as it moved these places it simultaneously cleared up on my scalp. It stayed these places until I was 14yrs old again no remission whatsoever and no change in severity.
Then the psoriasis moved again from those places back onto my scalp again completely covered and when moving simultaneously cleared up on my body and face and again no remission whatsoever and no change in severity. It has remained on my entire scalp the same and hasn't moved since, again no remission whatsoever and no change in severity I am now 28yrs old.
Also the entire 28yrs I have had psoriasis permanently, I also have psoriasis in my eyebrows and ears inside and out and have it underlying on my entire face by which I mean you can't see it on my face but my skin is extremely dry and the second I don't keep on top of it by exfoliating it off and deeply moisturising my skin gets dryer and patches of psoriasis will appear on my face and just grow and grow and spread rapidly, which is odd as the psoriasis everywhere else can not be kept at bay and does as it pleases regardless of my efforts.
I saw a dermatologist at 14yrs old as I went to my doctor's regarding my psoriasis and they referred me. I saw a dermatologist for 6months they prescribed every cream/ointment at all the varying strengths going for my face and body along with some emoliants for skin and bath water. These had zero effect, this was the first 3months of my treatment then as said earlier in this time period is when it moved from my face and body and went onto my entire scalp so the dermatologist for the next 3months was treating my scalp with again every hair cream/ointment at all the varying strengths going. These had zero effect also so then they tried a salicylic acid solution again zero effect so they then made up a coal tar preparation to leave on overnight and wash out the next morning using T gel shampoo again zero effect so they made the coal tar preparation stronger again zero effect so they then made the coal tar preparation as strong as they possibly could again zero effect and I was told that they couldn't help me any further so there was no point having the dermatologist appointments which I saw them 1 or 2 times every month and I was no longer a patient, they wouldn't see me anymore and that I was controlling my psoriasis in the best and only way possible which up until seeing the dermatologist if it was on my face and body was zero treatment other than scrubbing with soap and a flannel to exfoliate it and if it was on my scalp was every 2nd or 3rd day to have a bath and use my nails to scratch the plaque's off my entire scalp and go over after with a metal pronged nit comb to ensure I had got it all off this took 3hrs in the bath. I had only been doing that upto then as I had no help or treatment and it was all I could do to prevent it taking over completely the dermatologist said although not the convential method this was exactly what I should do as she had never seen psoriasis this severe and thick scaled and it was unheard of to have no family history of it or for it to have never gone into remission ever so said I should just keep doing what I was to get it off as the scaling just built up again in the 2 or 3 days and what I was doing was working for me. I asked her why I had psoriasis in a way she had never heard of before and she said she didn't know and had never seen a patient so severe I asked if she could look into why I had it in a way no one else did and she said she couldn't as it was unheard of to have it how I did. I explained that what I was doing for my psoriasis was not working for me at all it was not keeping it under control, it affected all aspects of my life, I was not coping with it and my method for my scalp was excruciatingly painful and took far too long to do her response was as she had said they could help me no further, keep doing what I was doing, avoid stress, try yoga and go back to my doctor if I wanted help. So I was on my own again left to deal with it.
I didn't get any help or support whatsoever after that. I then saw a dermatologist because I went to my doctor's regarding my psoriasis and asked them to refer me to a dermatologist and they did. I was 23yrs old. I had been dealing with the psoriasis on my entire scalp myself all those years with no remission whatsoever. I wanted to see a dermatologist because I had got no better at all ever, no remission whatsoever and wanted to try again and find out if there were any other or new treatments as no one tells me or helps at all I was just left to deal with it alone with no treatment or support and my entire neck had developed tight, inflamed red, sore slightly flaky skin overnight and had hives on my face and a painfully tight, sore throat. I thought a dermatologist could at least help my neck and as an added bonus I could try again about my psoriasis. I knew my neck wasn't psoriasis as I had lived and dealt with psoriasis on my own my entire life I knew how my psoriasis would appear and develop and spread from tiny patches over a while and that it would move and simultaneously disappear from where it was previously a relocation is what I referred it to with no remission it just switched places with no less severity. I knew how it felt, looked, texture whether on scalp or body or face as I had already experienced this and my psoriasis was still just the same on my entire scalp, no remission whatsoever, no less severity and no relocation so I was 100% certain my neck was a seperate condition it appeared overnight from a perfectly normal neck to completely covered red, swollen, inflamed, slightly flaky, itchy, burning and bleeding very easily if I exfoliated it also having hives on face and painful, tight sore throat where the back of my throat and uvula was red, sore, inflamed and angry and breathing difficulties. So nothing like psoriasis I thought maybe some sort of awful allergic rection or immune system response so thought a dermatologist could fix it anyway I was at dermatologist for 6months again seen every 1 or 2months only saw the same person twice once at start and once at the end other then that every appointment was a different person I found this unusual as last time I saw the same person all the time anyway I walked in the room for appointment dermatologist sat at desk and before I had even got through the door he had read my medical file which states psoriasis in it took a glance from across the room sat down and took one look at my neck and proclaimed it was psoriasis I sat down explained how it was no way the same as my psoriasis and asked him to check my scalp physically for comparison to aid a diagnosis and explained about my hives, breathing difficulties and sore throat and that I thought it was an allegic reaction he actually examined me now and refused to even listen and proclaimed it was psoriasis with no explanation about anything or the rest of my condition hives etc he sent me away with another appointment no treatment or help next appointment different person read file agreed with intial dermatologist without any inspection or listening to me again sent with appointment no treatment or help next appointment saw a woman who again read file proclaimed psoriasis and offered me methotrexate at this point I was broken and upset at lack of listening or diagnosis but thought why the hell not who knows maybe it will help my scalp which is psoriasis and when it doesn't help my neck I will have proof and they will have to listen and diagnose me properly so I was put on methotrexate after all the intial checks for it scans, x rays, blood tests galore etc meanwhile every appointment after saw someone different each time had to explain right from beginning at every appointment and all didn't listen or ignored me read file and proclaimed psoriasis with no physical examination ever anyway second to last appointment (did not know this at the time) saw the intial woman dermatologist who put me on methotrexate I thought finally my chance to get my side across while on methotrexate my breathing got worse, my hives, sore throat, and neck got worse and my scalp psoriasis had absolutely zero change in severity again no remission whatsoever and methotrexate just felt like it was killing me I could barely get up a single staircase, was dizzy, nauseous, couldn't bare to talk or swallow my throat was that bad, couldn't sleep or eat just exhausted and zero improvement in anything at all I thought enough is enough it is not worth killing myself for zero results and risking my health so I explained I wanted to come off methotrexate as I explained what it was doing to me and zero results and I was way past when results should have occurred I gave it plenty of chance but it wasn't worth it she said it was unheard of for methotrexate to not help at all examined me and agreed it had done nothing for me and in the next breath said why don't we lower your dosage I said no I'm done no more I'm coming completely off it as it has done nothing other then mess me up more she agreed and then said for her report could she lie and say it had helped a little as this was for the research and results of methotrexate for future psoriasis patients this made me angry no you may not I proclaimed you can write down every word I have said else I will refuse to sign it she reluctantly and moodily agreed whether it was altered after is anyone's guess I left with another appointment no treatment, zero remission or change in severity or location of psoriasis or anything else neck etc. My next appointment was with the intial dermatologist from the start he offered the biologics (basically the injectables similar to methotrexate) I refused based on methotrexate messing me up and having zero effect he tried for a while to coherse and persuade me I stuck to my guns and refused he prescribed betamethasone ointment on a repeat prescription for my neck and the hives on my face and said they could not help me and I would not have any further dermatology appointments and to go to my doctor if I needed help. I left feeling as though I had been poked and proded, weekly blood tests all for methotrexate to just be a human guinea pig to test on and try to lie about the results and when I didn't want to play ball anymore that's it get lost your on your own.
Afterwards at a doctors I had registered at when I moved house I was sorting out my repeat prescription of betamethasone at my intial new patient appointment to join the surgery and was asked what I used betamethasone for and why did I have it on repeat as it's a potent steriod cream I explained the dermatologist had done it and I used it on my face and neck. The doctor was flabbergasted and exclaimed it wasn't surpose to be used on your face for longer then 3 weeks at a time I was upset and angry and re-explained about the dermatologist she looked at my medical record on her computer and printed a sheet out regarding my last dermatology appointment. It read that I had the most severe psoriasis on scalp and here's the kicker no mention of my hives, sore throat, breathing difficulties or neck it stated I had psoriasis on my back and thats what betamethasone was prescribed for I was in shock really utter lies I had never in my entire life had psoriasis on my back ever I exclaimed to the doctor it was lies and offered to show her my clear, normal back as proof and reiterated about my scalp psoriasis, hives, sore throat and obviously visible neck and explained my lack of help or support and all about methotrexate and that while betamethasone did nothing for me I wouldn't cope without it as didn't help my neck but it did soothe and stop it spreading further then my entire neck unlike my psoriasis which did as it pleased yet another reason I didn't think my neck was psoriasis as my psoriasis had never responded to anything at all I begged the doctor for help. She added betamethasone to my prescription again and said for future if anyone asked what it was for say it was for my back. What the hell I could still have the only treatment I had been given based on a lie but she was going to continue the lie seriously.
I was desperate for any help though so stayed on betamethasone I kept trying to ween myself off it figuring I shouldn't use it permanently on my face and neck but couldn't come off it as my neck got aggressively worse and this was all that kept it at bay by which I mean still covering my entire neck, getting abuse it public for how I looked nothing new there I had experience of this from my psoriasis so I stayed inside more and if I had to go out I covered up with scarf's and hooded jackets. I was never asked about betamethasone again even though I have changed doctor's due to moving house several times since they just do my repeat prescription no questions.
I'm now 28yrs old since then my psoriasis is still on my entire scalp, no remission whatsoever, no change in severity however my neck I finally healed and cured this year as I switched to more natural and organic beauty and toiletries so I wanted to find a natural cure for psoriasis and my neck just anything that may help figured if I'm on my own to deal with it maybe I can ease, control my symptoms or cure myself possibly. I researched natural thing's to help psoriasis such as hempseed oil, zinc oxide, zinc rich carrier oils such as almond oil etc, oats etc but my research has found everything that's supposed to be good for psoriasis makes mine worse zinc of any kind oxide or oils rich in it hemp, almond, jojoba etc salicylic acid makes me worse so do dermatogy products parrafin, petroleum etc also only thing that helps a miniscule amount is not being on harsh chemical products moisturiser, shampoo and conditioner etc and avocado oil this severely limits what I can buy to help as can't buy chemical, can't buy dermatology products and can't buy most natural products as I seem allergic to coconut oil, almond oil, hempseed oil, pomegranate and castor oil and they nearly all have one of these ingredients in anyway figured I could sort my neck out as I am still to this day adamant it is not psoriasis so I tried to find a natural alternative to betamethasone because at least I could come off it and use a natural and unharmful alternative so I researched natural steriod cream/ointment and noticed that the only real potent ingredient was zinc oxide in them other than a whole host of things I didn't get on with hempseed oil etc so I bought Weleda calendula nappy change cream as it contained high zinc oxide and nothing I was allergic to and I used it just for my neck and in a couple of months it had healed it completely clear I was thrilled but angry it was that easy and I wish I had tried to sort it myself years ago begs the question though zinc oxide healed my neck yet aggrevates and makes worse my psoriasis so how is it the same condition at all? (according to dermatologist) however after my neck was healed I was scared to come off the zinc oxide for fear of it coming back with vengeance and since the zinc oxide healed my neck it then aggrevates it and causes dry, flaky patches so I stopped and my necks totally clear with zero treatment. Odd that something that healed my neck now aggrevates it.
I'm still searching and researching as best I can for my psoriasis cure as it's barely any better still on my entire scalp, no remission whatsoever and no real change in severity and I'm still on the 3 to 4hr baths which is excruciatingly painful and exhausting. I feel too old to keep coping already. As it hurts the hell out my scalp and makes it sore and red, bleeding occasionally as have no other choice and my joints are ceasing up and popping out of place which is another thing nobody has ever even uttered to me about psoriatic arthritis or the increased mortality rates or compromised immune system.
So sorry for the amount of detail I hope you will read this just wanted you to have some background and any help/advice you can offer regarding any of it would be amazing I would be truly grateful and just a rough summary of what I would like to ask is below but again absolutely anything you think regarding the detail or suggestions of any kind please let me know I would appreciate any help.
Why did I get psoriasis at such a young age? its unheard of according to dermatologist
Could I have been diagnosed at a doctor's surgery, not referred to dermatologist and received no treatment? I only know what my parents told me
Why have I never had remission whatsoever? Not a single day, hour, min or second
its unheard of according to dermatologist
Why have I got psoriasis so severe? With no change in severity
Why do I not respond to any treatments?
There is no family history is it psoriasis?
What is my neck, hives, sore throat, breathing difficulties?
My neck is healed however the hives, sore throat are no better and the breathing is a bit better
If it is psoriasis can you explain psoriatic arthritis and mortality rates and compromised immune system? I have been given no information
If I'm so severe does that mean the mortality rates and psoriatic arthritis and compromised immune system are higher?
Is there a test to confirm a psoriasis diagnosis? Ie blood test etc
Is there a nutritional/vitamin deficiency test?
This would help me figure out natural remedies or things that would help
Is it right that I have been left on my own to deal with it?
In 28yrs I have had 1yr of help split up into 2 6month dermatogy visits
My doctor's are supposed to tell if a new cream/ointment or treatment comes out but no one told me about betamethasone, methotrexate etc is this right?
Any advice/suggestions/treatments/natural remedies anything you think of would be so helpful
Many thanks and again I'm so sorry for the essay I truly appreciate your time reading this
Lindsey
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Re: Diagnosed at 3 years old and still have it at 28

Postby Dr Anton Alexandroff on Fri Oct 19, 2018 4:24 pm

Dear Lindsey,

I am so sorry to hear about your difficult to treat psoriasis! Here are my thoughts and answers.

Why did I get psoriasis at such a young age? its unheard of according to dermatologist
-Yes I agree, it is unusual to be diagnosed at such early age, but in medicine there is no 100% rule I am afraid.

Could I have been diagnosed at a doctor's surgery, not referred to dermatologist and received no treatment?
-Psoriasis is usually can be diagnosed easily, so depending on the skills and training of a GP involved and how typical or unusual psoriasis looks like, psoriasis can be diagnosed by a GP or patients can be referred to a dermatologist to make a diagnosis/receive treatment. As a general rule dermatologists are more skilled in diagnosing psoriasis and prescribing the most suitable treatment.

received no treatment? I only know what my parents told me
Why have I never had remission whatsoever?
-Sometimes psoriasis is very severe without remissions. I treated some of such patients. Fortunately recently we gained access to new biologics (injectable antibodies) such as Secukinumab, and at present we can keep any patient clear from psoriasis with the help of these new treatments. You can ask your dermatologist to prescribe it for you.

Why have I got psoriasis so severe? With no change in severity
- Sometimes psoriasis can be very severe, I am afraid.

Why do I not respond to any treatments?
-Sometimes psoriasis needs very potent treatment like Secukinumab biologic.

There is no family history is it psoriasis?
-Although psoriasis is more likely if parents or siblings have psoriasis, it is possible to develop psoriasis without family history of this condition.

What is my neck, hives, sore throat, breathing difficulties?
-It is impossible to make a diagnosis without seeing you but I wonder if you might have a co-existing urticaria. In this case you may benefit from an antihistamine or a biologic called Omalizumab. If you have breathing difficulties you need to go to A&E ASAP.
-If it is psoriasis can you explain psoriatic arthritis and mortality rates and compromised immune system?
Yes, psoriasis may be associated with psoriatic arthritis - joint disease. If there a suspicion of arthritis in patient with psoriasis, patients need to be seen by their GP or rheumatologist.
Yes, severe psoriasis (which is define as 10% or more of body surface skin involved or need for systemic medication such as methotrexate) is associated with a higher risk of heart attacks, strokes and mortality. Present recommendations recommend to address the risks of such conditions - avoid smoking, obesity, control high blood pressure and so on.

If I'm so severe does that mean the mortality rates and psoriatic arthritis and compromised immune system are higher.
-No, risks of psoriatic arthritis is same as in patient with mild psoriasis.
-Yes, I am afraid, risks of heart attacks and therefore mortality is higher, so please see advice above - it would be a very good idea to chat to your GP and see if you need to address any other risk factors for heart attacks.
-It is more about that your immune system is over activated rather than compromised, mis-recognises your own skin as foreign and attacks it. Methotrexate and biologics tend to control the over-activation of the immune system.

Is there a test to confirm a psoriasis diagnosis?
-yes skin biopsy can be performed and is usually helpful. However, in the majority of patients skin biopsy is not required because psoriasis looks typical so it is easy to make a diagnosis.

Is there a nutritional/vitamin deficiency test?
-psoriasis is not usually associated with a nutritional/vitamin deficiency.

Is it right that I have been left on my own to deal with it?
-I am so sorry. This does not sound right. You should have an appointment with a dermatologist to discuss further treatment e.g. secukinumab biologic.

My doctor's are supposed to tell if a new cream/ointment or treatment comes out but no one told me about betamethasone, methotrexate etc is this right?
-I am so sorry. GP may not be the best persons to advise you on new treatments available for psoriasis because new treatment for psoriasis appears very often and it is difficult for GPs to keep pace with constant updates of psoriasis treatments. It would make more sense to see you dermatologist for this.

Any advice/suggestions/treatments/natural remedies anything you think of would be so helpful
-I am afraid dermatologists do not study natural remedies in medical school, natural remedies are not licensed to be used in the UK, and doctors are advised by to prescribe preferably licensed medications if such are available. I would suggest to see your dermatologist again and discuss treatment with Otezla oral medication or secukinumab biologic. However there are other good biologics also available.

I hope this is helpful.
With Best Wishes,

Dr Anton Alexandroff FRCP(UK) PhD CCT(Derm) FRSM FAAD
Consultant Dermatologist and Honorary Senior Lecturer
The British Skin Foundation Spokesperson
London, Cambridge, Leicester and Bedford

http://www.alexandroff.org.uk
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Dr Anton Alexandroff
Consultant Dermatologist, Honorary Senior Lecturer & BSF spokesperson - FRCP, CCT (Derm), PhD, FRSM, FAAD

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Re: Diagnosed at 3 years old and still have it at 28

Postby Slyendiz on Fri Oct 19, 2018 9:40 pm

Dr Alexandroff

I just wanted to say thank you.

Firstly for reading and addressing all the concerns in my post.

But also for giving me more advice and answers than I have had in 28 years and not just giving me the same responses that i have had repeated to me over and over again.

I appreciate this must be quite difficult to do without actually seeing the condition. Im sorry i asked so many questions and went into such detail as i realise it was meant to just be ask a question but wanted you to have as full a picture as possible in the hope you could help, which you have.

Thank you again for taking the time to respond and for your advice and support, it is greatly appreciated.

Lindsey Webster
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