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Late 2014 I was invited to the offices of Aurora Healthcare to take part in an interview about psoriasis. It is a frank interview with no preparation as to what the questions would be. I hope that watching it will help people understand what it is like to live with psoriasis. If you do watch it, thank you for taking the time.

Alternatively you can watch this via You Tube as below:

SD version

HD Version

Mobile Version

Please note, the video was funded by Novartis.

Changing the routine

Following UVB light treatment last summer, which unfortunately only gave me about a month’s clearance, the last 10 months have been all about control of my condition with varying degrees of success. The first few months were fine but then a slight flare up around February this year led to more patches appearing and the fight against flaking starting again.

I went through numerous creams and ointments, trying new things, bathing and so on. Then came the idea to move house (which annoyingly still hasn’t happened yet) so there has been added stress since April. Add in a health scare, which has turned out to an infection of which I am now clear, May and June were particularly stressful.

Some who read the blog will know I tried a new product, Philips BlueControl LED. I had high hopes for this and have to admit defeat. That is not to say that it does not work, it just didn’t work for me, As the name suggests it controls psoriasis and if you add stress and bad health into the equation it could prove not to be as effective as it should be. I did go through a couple of weeks not using my topical steroids whilst using it and my skin got no worse. Effectively it kept my condition stable so this does show that is has some kind of effect.

I do feel I may have been a little unfair to BlueControl as I have quite a few patches, 7 on one side and six on the other side of my body (plus other spots here and there. With each treatment session taking 30 minutes this could mean trying to find up to three and a half hours each day to take the treatment. So this just didn’t fit into my work and home life. It should not discourage others from looking into it and giving it a go though.

So how have I managed to start clearing my skin. Well the stress levels have certainly not dropped. We have not yet moved and are becoming increasingly frustrated with how long everything is taking and I was only given the all clear by the hospital yesterday that there was no serious underlying issue with my health.

My routine has been this:

Shower every day, bath 3-4 times a week. I know, water dries your skin out and people with psoriasis often shy away from showering or bathing too often. When showering I have been washing my hair with Alphosyl 2in1 shampoo and also using it as a body wash on alternate days with Dove deep nourishing body wash. Yes, Dove that you buy off the  shelf and isn’t medicated.

When I bathe I put a drop or two of Alphosyl in the running water along with a good squirt of Aveeno body wash, also using Aveeno to wash with.  Once or twice a week I will also slather on an emollient before getting in the bath. Generally this will be Diprobase or Boots Derma Care moisturising cream, something thick and rich. In the bath I regularly add in a mix of dead sea and Epsom salts.

Once out of the bath I put a light lotion on so I don’t feel too sticky and currently have been using Aveeno moisturising creamy oil as this soaks in really well. After that goes on either Dovobet Gel (Ask for the gel, it’s so much better than the ointment) or Dovonex although usually Dovobet at the moment. Also applying the same in the evening a couple of hours before bed At the weekends I do something that I am not sure is right but it is working. I will put on the cream, then Dovonex and follow this an hour later with Dovobet. It was using the two products in conjunction lie this which really started to make a difference.

Now I am not sure if using a shampoo as a body wash and using two prescribed treatments together is correct or would be approved by my derm. The thing is when nothing else works, we become desperate and from desperation comes invention. This is nothing really harmful in Dovonex and it is not a steroid so I thought, what the hell. I am sure I am not the first psoriasis patient to use treatments in places they are not meant for. Please note though that as I ma not a doctor, I cannot recommend you do the same, I am writing this to make a point. The lack of effective treatments leads to us making or own.

I may as well add for my scalp I am using Betnovate and dab a bit on my fingers to do the inside of my ears. So there you have my current routine. Sounds like a a lot but in the morning I am showered and creamed up in half an hour. I always have a moisturiser and dovonex with me in case I need a top up during the day. The difference it has made is this:

9th May

9th May

The picture about is from the 9th May, you can see flaking and scaling which has been constant up until three weeks ago when I changed to the routine above. Below you can see the same leg is still red but has no flaking or scaling.

26th June

This may not look like a massive change but to a psoriasis patient it means a lot. No flaking means a lot less itching and no itching means restful nights, reduced stress and much less discomfort. I still won’t wear shorts but at least I’m not spending all day scratching, feeling tired or worrying about the pile of flakes I am leaving under my desk at work.

Money saver notes:

You can get this in double packs and my GP found he can then give me two of these on your NHS prescription so you get four bottles instead of the normal two.

Look out for offers in Boots if you want to try the creams I mentioned, they are often on 3 for 2 or other deals. Bulk buy when on offer.

The most cost effective bath salts I’ve found are Westlab, £4.99 for a kilo bag. They also do Himalayan as well as Dead Sea and Epsom. .

QualityCare™ by Leo

I have been working Leo Pharma for a few months now with their website, QualityCare™. There were many phone calls, discussions and meetings before I decided to get on board with, what I believe, is a great source of reliable information on psoriasis.

QualityCare™ is a site for patients, healthcare professionals and carers providing information, advice and real life experiences. The information on the site is reliable as it is checked, double checked and triple checked. I know some people are wary of Pharma company sites, thinking they are selling their products. However, nothing is sold on the site, it has been developed purely to help people and most importantly, patients. It has also been written in conjunction with psoriasis patients.

The patients in the blogger universe are:

Helen a.k.a Flaky Fashionista. Helen will be talking about fashion & what to wear so even if you’re flaking you will still look fabulous. Helen is  on Twitter as @FlakyFashnista and has her own blog http://www.theflakyfashionista.com

Jess is a young woman who talks about work, meeting new people and going on holiday. Jess is also a fellow blogger with her site https://jessicaandpsoriasis.wordpress.com and can be found on Twitter as @jessnpsoriasis

Rena, the beauty expert. Rena is a professional make-up artist who will give you tips and advice on how to look amazing. She is a psoriasis warrior who wears her scars with pride. Rena also has a blog https://psoriasisexposedbyrena.wordpress.com/ and is on Twitter as @RenR179

Then there is me, the foodie. I will mainly be talking about my passion of eating and cooking. There will not be much about telling you what you should or shouldn’t eat. It is more about enjoying your life and living without psoriasis controlling you. If you want to follow me on Twitter it is @SImonlovesfood

Last week saw the official launch of the Site and App and I was honoured to speak on behalf of the patients, along with Rena, about our experiences with psoriasis. We were joined by Anthony Bewley, Consultant Dermatologist, Barts Health, and Reena Shah, Specialist Clinical Psychologist in Dermatology, to give the healthcare view. It was great to meet both Tony and Reena who showed they care deeply about the welfare of the patient and are making a huge difference to people’s lives. It again brought into focus that psoriasis is not just a skin thing, there is a psychological impact also.

When you log onto the site you will be asked to log on, whether your create a full profile is up to you. I urge you to use this resource. Being a pharma company, Leo have to go through several stages of approval to ensure the information is both accurate and reliable. So whether you have psoriasis, care about someone who has it or just want to know more, it is a great resource.

Along with the site there is a new App also, MyPso. The app is very simple to use is available on Android and Apple, just search MyPso by Leo in your market places and you should find it. The app allows you to track your symptoms and treatment, you can even put in what seems to trigger your flare ups to give you an overview of your psoriasis. There is also the ability to take photos of your patches so if you are on a treatment plan you can keep a record of how your skin is improving (or not). The results of this can all be produced in a pdf report which you can print off, view on your mobile device or even email to your doctor. It helps you prepare for your next appointment with the doctor and makes sure you don’t forget to tell them anything. The App also has a reminder tool so you don’t forget those all important treatments. The app is also completely anonymous.

I have been “itching” to tell you all about this as it has been extremely exciting to work on and have put a link to my first post here. If you haven’t visited the QualityCare™ site before it will give you a free view, to view again later you will need to create a profile.

QualityCare™ http://www.qualitycarebyleo.co.uk

Twitter @SkinCheck

 

Thought I’d open this old argument. There is a lot of rivalry with psoriasis, sometimes you see patients trying to outdo each other saying “Oh I had 50% coverage” followed by “Well I had 75%” and then someone else comes along saying “I had 85%, you know nothing (John Snow)”. That last one is usually me, I used to think I had the worse psoriasis going, no one had it as bad or has ever had it as bad as I did. Then I met other patients, read other patient’s stories and I realised that maybe I didn’t have it quite so bad. Yes is was severe but I wasn’t suffering as much as some people.

Now that I’m considered moderate I feel that I may actually have a tougher time of it than I did when 85% of my skin was covered (yes the 85%-er was me). Some of you may laugh at this and think, how can my skin be clearer and yet feel that I am worse off. It is quite simple, there is no treatment as such for me and here is why. When you have mild psoriasis, and by this I mean only a few small patches or just one patch, you have a multitude of creams to use and you don’t have to be covered in top to toe in greasy creams. You can pretty much get on with your life as normal and your psoriasis is an occasional irritation. Before anyone with mild psoriasis starts saying I don’t know what I’m talking about, I started with one patch on my leg so I have personal experience of such a mild case of psoriasis.

If you are unlucky enough to have a major flare up and become considered as having severe psoriasis there are fairly clear paths laid out. You go to your GP, you get referred and the options are topicals, biologics and light therapy. They will be prescribed by your consultant and supported (hopefully if your hospital is good). Yes it is a really bad place to be in, I have been there and literally was tearing my skin off in desperation. The thing is, you can get treatment easily because your skin looks so damn bad.

So after having all the hospital treatment, your skin clears and slowly the psoriasis comes back. You are able to manage it to a degree but it bothers you because it’s covering a fair bit of your body, most of your lower legs, patches on your arms, back and scalp. It means that the topicals are being used up pretty quick and you’re back to feeling sticky. What happens now? You can see your GP, which I do, and get some more creams and ointments. Your GP may even contemplate referring you but your GP knows that he hospital will turn you away when you get there. They will say, sorry, your skin looks okay to us. It looks okay? Well thanks, it may look okay to you, but it looks pretty bad to me. So it is okay to have nights interrupted with itchy skin, it’s okay to not want to wear short trousers or sleeves in public, it’s okay to feel sticky and greasy, it’s okay to leave a pile of dead skin where you sit and feel embarrassed? I guess then I shouldn’t complain as everything is okay.

I refer to moderate psoriasis as the black hole of psoriasis. You don’t really fall into any specific section. Your skin is too severe for your GP to really do anything about and you’re not severe enough for the consultants to spend their time on. The moderate psoriasis sufferers are like the forgotten people. We may as well be told, come back when your skin is worse, we’ll be happy to help you then.

Surely if we stop psoriasis getting worse at the moderate stage it would save time, money and people’s mental well-being. Why do we need to have severe psoriasis to be taken seriously? If someone breaks a finger, the hospitals don’t turn them away and say, sorry it’s not that bad, come back when it’s your arm. Anyway, I have the worst case of psoriasis and so do all of you. We have psoriasis, it’s bad at whatever level you have it.

Something I don’t mention a lot on here is that I have psoriatic arthritis. The reason I don’t say much is because generally it doesn’t bother me. The worst joint is the knuckle of my right thumb. Yes I have very specific psoriatic arthritis. Maybe, like me, it is very lazy and just can’t be bothered to go anywhere else.

When I first got it,it just ached a it now and hten and suddenly it was twice the size it should be and I was experiencing intense pain. Just hone hand out of action and I had to take two weeks of work to rest it up and try to get the swelling down. It was very annoying as I am very right handed, in fact my left hand is pretty much useless most of the time. It meant not being able to cook, unable to do up buttons or tie up my shoe laces. As much as it was an annoying time for me, I think it was worse for my family as I became a grumpy and very irritable git.

Recently I have had another flare up, in fact I am in the middle of it now and I have learnt a few things.

  1. Psoriatic arthritis really is painful. How so much pain can be caused by one joint is beyond me. The slightest knock and I am rolling on the floor crying my eyes out. Okay, a slight exaggeration but you get the point.
  2. I can’t wear 501s. The pain in just trying to do up the buttons is excruciating. I love my 501s and I am sure they feel most unloved as I have cast them aside for easier to wear clothes. Jeans have feelings too you know.
  3. Work is a pain in the, well, thumb. I work in accounts so spend much of my time at a keyboard and typing one handed is something I just cannot do a hard as I try not to use my right hand too much. But have I complained? Have I moaned about how much my hand hurts and aches? Have I gone on about the fact that work is just making it worse? You bet I have. I’m making sure everyone in the office knows.
  4. I have a new found admiration for anyone missing any part of their body. I really don’t know how they do it. I just have a thumb out of action and I feel pretty useless most of the time.
  5. Picking up a pint of beer is really difficult, so I am learning to drink left handed.
  6. My left hand is rubbish at almost everything with the exception of changing gear when I drive. (Becoming better at picking up pints.)
  7. I quite enjoy instructing my wife in the kitchen. Chop this, slice that, wash these, get the dishes, pour the wine. I would have made a great head chef and I’m not even shouty.
  8. My cat has no idea when I’m in pain. What they say about animals feeling when you’re in pain is a load of rubbish or maybe I’m just moaning about it for a bit of sympathy and he is wise to it.

I have been a lot more positive and light hearted about it this time. Honestly, I am in a lot of pain and even typing this out sends a shooting pain up my arm. The difference is now I can see I’m not that bad off. When I first got psoriatic arthritis I was also having a very bad time with my skin so it was a double blow. With my skin partially under control I am able to cope with the pain. Did I mention that it’s really painful? Not sure I got that point across.

This has made me appreciate my thumb and that cats must have a really bad time of it not have opposable thumbs. I would give my thumb a thumbs up and say hang on in there, it will get better. I would like to give psoriatic arthritis the thumbs down. The only thing is I can barely move my thumb so it more of a thumb neither up nor down to both.

I will leave you with this. If you know anyone with any form of arthritis and they mention how painful it is, please believe them. It is not just aching joints. For me it is just one joint and I am having to take anti-inflammatory’s and strong painkillers to cope. There are people with much worse cases than me so give them your support, or a thumbs up!

No I’m not getting married. Today is Friday, the start of the weekend and the start of something new. I am meeting with Jo from Philips later today who will be lending me two Philips BlueControl units. As Philips call it this is an “Innovative blue light treatment of psoriasis”.

WP_20150506_002

Many of you may have spent lots of time staring at the name Philips as they make most of the UVB light bulbs used in light therapy. They have now designed an LED light treatment, BlueControl, which is UV free and the results so far have shown there to be no side effects. It is aimed for people with mild to moderate plaque psoriasis on the legs and arms. Each use takes about 30 minutes, which may sound long if you have quite a few plaques to cover, although you can use this at home and just have it on while having your tea, reading a book, playing a video game or having an afternoon nap.

When I was given the chance to try out the units myself I jumped at it. The thought of a side effect free and convenient treatment was too good an opportunity to miss. Also, the option to continue with your topical treatments is entirely your own choice. So if this means no more sticky ointments or greasy creams I will be very happy. I will be even happier if this works for me.

BlueControl is still being tested and I would be happy to pass your details on if you are interested in trying this out. Philips do ask that you would be willing to communicate with them regulars and be happy to  provide before, during and after photos. They are pushing to have BlueControl made available on the NHS so the more people who give positive feedback the better.

So 8th May 2015 marks a new start and possibly new healthy skin for me. There will be continual updates on the blog whether good or bad.

Disclaimer: Please note that I am not employed or paid by Philips. The units remain their property and this is a loan of the equipment.

The Cancellation

A few of weeks ago I was sent my appointment to see the consultant for my follow up after UVB light treatment last year. After the disappointing consultation previously I decided to cancel this. After years of seeing doctors and follow up appointments after light treatment I knew what the response would be. “Well you’re not severe enough for us to consider anything else so it’s back on topical treatments.

I called to cancel the appointment and followed it up in writing. I explained my reasons, which were the poor treatment, lack of eye contact during consultations, lack of actually examining my skin and total lack of confidence in the consultants at my local hospital. The reply “We confirm cancellation of your appointment”. That was it. Possibly it would be a little cynical of me to think that the same attitude runs through the hospital.

I am glad to say it doesn’t. I have mentioned before that while I was undergoing light therapy the nurses were outstanding. The compassion and empathy they show makes you feel comfortable and at ease. They are remarkably good and getting you to talk about your feelings without you even realising too.

Having had to visit the hospital for a completely unrelated health matter reinforces my view that the poor attitude in Dermatology is not hospital wide. I spent two hours in one outpatients clinic and things ran fairly on time. I had to see a nurse and a consultant separately which was organised extremely well with only a few minutes back in the waiting room between both. There was no rush, lots of explanation and, importantly, eye contact. It may sound silly, eye contact is so important. Would you trust someone who doesn’t even look you in the eye? It restored my faith a little in the hospital and reinforced my decision to cancel the dermatology appointment.

So, what did I do after cancelling? I went back to my GP and we had a chat and after discussing topical treatments we agreed on one batch of a steroid gel to kick my psoriasis in the butt before going back on a mild topical treatment. The side affects of steroid cream cannot be ignored so this will be a one prescription treatment. There is another reason for doing this to calm my skin down, I will be trying a brand new treatment soon which does not use steroids, in fact it doesn’t involve and form of prescribed topical treatment. I am meeting with the company responsible at the end of this week so look out for an update soon.

I should add that I did not have a knee jerk reaction to cancel my appointment. I weighed up the pros and cons and considered if I would be better off going or not. The fact I was due to see the same consultant as before and that even if I asked to see someone else they couldn’t guarantee it on the day it just didn’t seem worth it to me. I do have a GP with a dermatology background which is useful. I don’t want to encourage people to cancel their appointments, please do think about it and consider your options. If nothing else, make sure you cancel in plenty of time so you do not get a bad record.

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