Living With Scalp Psoriasis

Good Day Everyone,

A quick disclaimer to say that I am not a medical professional and that you should not make any changes to your scalp psoriasis treatment without discussing it with your doctor first. Whilst I will be mentioning the treatments that I have tried, I am not recommending that you try them too. This is simply my personal experience of living with scalp psoriasis.

Today I wanted to follow up from my post about Living With (Body) Psoriasis and talk about my experience of living and dealing with scalp psoriasis. I have suffered from body psoriasis since the age of 17 and thankfully, even at its worst, it was never as bad as it could have been (although it felt really bad at the time) and I feel I got off pretty lightly compared to many people that suffer from this condition. However, scalp psoriasis was the complete opposite and I suffered extremely badly with this condition. I developed scalp psoriasis in my early 20s and it truly was the bane of my life! It totally ruled and dictated my life for way too many years and not in a good way!

Scalp psoriasis is the skin condition psoriasis but on your scalp (obviously). Psoriasis is an inflammatory skin condition in which the affected skin cells turnover at an abnormally high rate, resulting in the build up of skin plaques or scales which become very dry, itchy and crusty. Eventually these scales will peel / flake off, leaving behind very thin, red, sore layers of new skin the can easily break and bleed. It can be a very uncomfortable, even painful condition, which often leaves the sufferer feeling incredibly embarrassed and self conscious thus affecting sufferers emotionally, socially and psychologically, as well as physically.

For me, having this skin condition on my body was bad, but bearable as I could hide it with clothes, but when it spread to my scalp, it was so much worse because I have very dark brown / black hair. This means I constantly looked like I had severe dandruff. Every time I washed my hair, the scales of skin would soften and when I brushed my hair, the scales would start to peel and get caught in my long hair. I hardly ever went out after work as my evenings consisted of applying various smelly coal tar ointments and shampoos, leaving them on for a couple of hours, then washing them out. I would then spend the best part of an hour drying my hair and then picking each individual flake of skin out of my hair that had become loose. If there were any thick psoriasis patches on my scalp that felt like they were going to peel very soon, I would peel them using my nails (I know very gross!) just so that I could eliminate the possibility of them coming away from my scalp and sitting loosely in my hair whilst I was at work or out and about. By the time I finished, there would be so much skin on the floor that it looked like somebody had emptied a snow globe! I kid you not! But this was the price I was willing to pay to hide this embarrassing condition from as many people as I could. For years I never went on girly holidays or stayed over at a friend’s house because I didn't want them to find out about my scalp psoriasis.

Having scalp psoriasis was incredibly stressful because I found it much more difficult to conceal than my body psoriasis and it was much more time consuming to manage. Stress is known to make it worse and the worse it got the more stress it caused me - it became a vicious circle! . I felt incredibly embarrassed by the condition because I feared that if people could see flecks of skin in my hair they would think that I had dandruff, worst still, someone would realise that I have psoriasis. Whilst it’s not a contagious condition, not everybody knows that. I think I was also scared that people would think that my hair and scalp were not clean and that’s why I have this affliction. To avoid this embarrassment and humiliation I devoted most of my evenings to ‘clearing’ my scalp and hair of any signs of flaky skin. I also didn't get my hair cut for many years as I avoided going to the hairdressers (again due to embarrassment), although I have to say having short hair definitely makes it easier to deal with this affliction. This avoiding the hairdresser thing meant that the process of clearing my scalp took a long time as I’d have to peel flakes of skin from my scalp and pull it through the length of my hair. Sometimes the flakes of skin would be as large as say the size of a pea or even a cherry!

At its worst approximately 85% of my scalp was covered in psoriasis. It also spread from my scalp to behind my ears and the edges of my hair line (luckily it never spread to my forehead or face). This was the main reason why I never liked to tie my hair up but wearing my hair loose meant I had to spend ages clearing it of any sign of this damn disease – it felt like a no win situation.  When the majority of my scalp was covered in psoriasis I would have this constant tight sensation, like a ball made completely of elastic bands, all around my head. It was incredibly uncomfortable. There were times when I felt complete and utter despair but yet I never talked to anyone, not even my doctor, about how this condition was ruling my life. That is one of my biggest regrets :o(

By the time I developed scalp psoriasis I was no longer under the care of a dermatologist (skin specialist) but was instead seeing my GP (family doctor) for repeat prescriptions of various skin ointments as my body psoriasis had improved following light therapy. So it was my GP who prescribed various treatments for my scalp psoriasis. These mainly consisted of smelly shampoos / ointments. However, none of them seemed to work. I went back and forth to my GP a few times, but because I was so embarrassed by it all, I never took active control of my treatment (another one of my regrets). Also, I felt like my GP never really cared about my condition because he didn't ever ask me how it was affecting me, my life or making me feel and he didn't refer me to a specialist, he would just simply refer to his MIMS (medical drug list) and churn out another prescription. In hindsight, I wish I had pushed for a referral to the dermatologist, instead of going back and forth to the GP trying various ointments. It got to the stage where I was so disheartened that I just started to get a repeat prescription for whatever treatment the GP had prescribed and didn't even bother going to see the GP when I felt it wasn't working. I guess I had kind of accepted defeat and come to the realisation that I was stuck with this condition for the rest of my life! What also didn't help was the fact that I moved towns every few years (due to work) and didn't really build much of a rapport with any of my GPs.

I tried sooo many different treatments both prescription and non-prescription to treat my scalp psoriasis. Treatments I tried included, Neutrogena T/Gel Therapeutic Shampoo, Alphosyl shampoo, Elocon scalp lotion, Bettamousse, Diprosalic scalp application, various coal tar preparations and shampoos (these smell so bad), Dovonex... and the list continues. I've spent many nights sleeping with a towel on my pillow wearing a shower cap, hoping that this particular treatment will work, devoting all my time outside of work to trying to calm this disease down to a more manageable form. I even tried dandruff shampoos like Nizoral, even though it wasn't dandruff that I was suffering from, but I used them in the hope that they would relieve the itchiness. 

I've read lots of literature about how fish oils are thought to help with psoriasis, as well as eating a healthy diet, exercise and managing stress levels. For me, I've never been a big fish eater but I did start to take fish oil capsules. My diet has always been reasonably healthy being a lover of fruit and vegetables and not naturally having a sweet tooth. There are lots of theories about certain foods aggravating psoriasis and other foods which seem to be more beneficial and I will touch upon this in a future post that I plan to do. The part where I guess I struggled the most was managing my stress levels. When I look back at the times when my scalp psoriasis was at its worst these times typically correlated to stressful times in my life be it due to relationships, work, money worries, big life changes etc and I never used to be particularly good at managing my stress levels. The fact that I had a career which had me working long hours with lots of travel where I would often end up skipping meals and not getting time to relax and chill out didn't help either.

The turning point for me, came partly when I met my hubby and partly with age. With age came confidence and with confidence came inner strength that enabled me to take more control of my life and address the things that caused me stress. I changed jobs, I walked away from people and relationships that were doing me more harm than good. I also found ways to relax. I started to go for regular hot stone and Indian head massages that not only helped with my migraines but helped me to de-stress.  I started going for walks which I find mentally very calming and started replacing TV programmes with listening to relaxing music. I invested my time in relationships and friendships that I felt were more sincere and true, rather than trying to get along with everyone.

When my hubby and I first met, I never used to let him touch my hair (or come anywhere near it for that matter). I hid my affliction for as long as possible. When I did eventually tell him about my (scalp) psoriasis he was incredibly supportive and reassuring about it. Being in a positive, loving relationship did wonders for me. I finally felt like I had a best friend that was with me always, someone I could talk to about anything anytime. You see I’d never had that kind of closeness before. I've never been hugely close to my parents (as much as I love and respect them, I would rarely discuss my feelings with them), being the only girl, I never had that sisterly bond and I wasn't close to my brothers. Being with my hubby gave me immense peace of mind which in turn made a hugely positive difference to my stress levels and the way I dealt with stress. He was a much needed calming influence in my life.

The other thing that changed more recently (I’m talking the last 2-3yrs) was that I finally found a treatment regimen that seemed to work for my scalp psoriasis. Today, I still have scalp psoriasis, but only in about 10% of my scalp and it’s not particularly thick / built up - that I can live with!!! The treatment regimen that worked for me was using something called Cocois ointment which I apply to the affected areas of my scalp, leave it on for an hour or two and then wash it out using the medicated shampoo, Ceanel (followed by my regular shampoo and conditioner). Last year, once I’d given up work, I applied this treatment religiously almost every single day for about 5 months and it did wonders to calm and clear up a lot of my scalp psoriasis. Now I've got to the stage where I only need to apply 3-4 times a week. In Singapore I can buy the Cocois ointment without a prescription (in England it's a prescription treatment) but I've never been able to find the Ceanel shampoo so I always stock up when I go back home where I can buy it from Boots pharmacy without a prescription. I've never actually tried to wash out the Cocois ointment with just regular shampoo and if I'm honest I couldn't tell you whether it's the Cocois ointment that's working or the Ceanel shampoo or whether it's the combination of the two. I've always used the two together and that combination works for me.

In addition to the above combination, almost every Sunday I massage pure coconut oil onto my scalp and hair and leave it a for a few hours before washing it out. A lot of psoriasis treatments contain some form of coconut compound as it shown to help plus it’s a great natural treatment for your scalp and hair generally as it relieves itchy and flakiness. It’s also very nourishing for the hair and leaves mine very silky, shiny and smooth. I've also been going to the same hairdresser for the last ten years or so who knows that I suffer from scalp psoriasis and is incredibly reassuring about it so I never feel embarrassed. If a hairdresser makes you feel uncomfortable or embarrassed about your scalp psoriasis then take your money and spend it elsewhere.  Call up a hairdresser and explain over the phone about your scalp psoriasis and if they are reassuring about it then go for it but if they don’t even know what it is then I’d recommend staying clear of them.

Whilst things are the best they've ever been on the scalp psoriasis side of things, I’m pretty convinced that this improvement isn't just down to finding the right treatment regime for me but also other aspects of my life. It maybe that previous treatments didn't work for me because I had so many other factors that were aggravating my scalp psoriasis, like working crazy hours, not getting enough rest, being stressed and always worrying about things. Perhaps those treatments never had a chance until all the other factors calmed down. Nowadays, if I get stressed my scalp psoriasis (more so than my body psoriasis) does start to spread and flare up again as I find new patches forming. When this happens I make a more concerted effort to manage my stress levels, eat and drink more healthily and follow the above treatment regimen more strictly and regularly.

If you suffer from scalp (or body) psoriasis then my advice to you would be not to suffer in silence like I did for I would never want anyone to feel that kind of complete and utter despair. Make sure you seek medical advice. Go and see your GP / specialists and talk to them about how it’s affecting your life and making you feel. If your treatment isn't working then go back to see your doctor again and again, as many times as you need to. As well as the medical side of things, try to evaluate and pinpoint what aspects of your life might be contributing to your psoriasis. Managing stress levels was a huge thing for me and stress is known to make psoriasis worse. Look at your diet, do you need to take fish oil supplements which are known to help, do you get enough sleep and time to rest and chill out. Do you have someone to talk to? Bottling things up will only cause you stress. Believe it or not, you can be stressed without actually realising you are stressed – I can’t remember which doctor told me this but he/she said that you may think you’re not stressed and that you have nothing to worry but you could actually be ‘subconsciously’ stressed where your mind is refusing to let you acknowledge or admit to yourself that there is in fact something worrying you because you will then have to deal with it. It’s sort of like mental denial.

Below are some links to websites and organisations that you could turn to for support and advice and you know that you are more than welcome to drop me an email if you just need to talk to somebody who understands what it’s like to live with this affliction. Whatever you do, please don’t suffer in silence because I’m sure there’s something out there that can help you in some way, even when you think nothing is ever going to work.

Love Sheen xxx

Online community of psoriasis sufferers:

http://www.inspire.com/groups/talk-psoriasis

http://www.psoriasispatients.com/home.php

In the UK, channel 4’s Embarrassing Illnesses series feature scalp psoriasis:

http://www.channel4embarrassingillnesses.com/conditions/scalp-psoriasis/

UK: https://www.psoriasis-association.org.uk/

UK: http://www.psoriasis-help.org.uk/

US: http://www.psoriasis.org/in-your-area

Singapore: http://www.psoriasis.org.sg/