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Winter is Coming

It may be quite clear from the title of this post that I am a Game of Thrones fan. This isn’t going to be a post where I relate psoriasis to The Game of thrones although it has crossed my mind that I could Simon of the House Stark fighting the might of the House Psoriasis. Or maybe I am one of the Whitewalkers and the healthcare professionals are the Night’s Watch. The fun I could have making up my own little parody world. I simply used the title to say what it means, winter is coming, and for psoriasis sufferers and others with dry skin conditions this can be the worst time of year.

In the past I have been pretty poor at preparing myself for the cold mornings and chilly winter nights. This is the first winter for some time where my skin has been relatively clear to start with so usually I am already in the midst of a routine. This year I have to think about it and for my psoriasis addled brain that is a task I find most tedious. So here are my tips for preparing for winter.

Moisturise. Sounds simple really and it is. Get a good moisturiser to start that protection and do it every day whether you’re going out in the cold or not. For me currently I use a lotion during the day as they’re lighter and soak in better than creams or ointment. At night a good cream moisturiser is a must, build up the protection of your skin before the next day. Aveeno, Boots Derma Care and Epaderm are my usual stock items. Always worth trying something new though so keep and eye out on offers. Avoid anything with added perfume. For added protection, baby oil at night is good, I found Mia Moo do a good baby oil.

Make sure you have a stock of your topical treatment (if using one). It seems there are many supply issues with a lot of the medications lately so make sure you don’t run out. Always important and more so in winter as it is a time when flare ups can attack quickly. I won’t suggest anything here as you need to consult your doctor on the best medication.

Hand cream. Oh I sound so masculine. Make sure you use a good hand cream, your hands are more exposed than most of your body so they need some extra protection. The main one I use is Aveeno hand cream, for me it is the least greasy. I am trying something new at the moment though and will let you know how that goes.

Don’t forget your face. This is an area that I have found difficult to manage in the past, I find a lot of creams leave my face feeling  greasy. For men I would suggest a good after shave balm or moisturiser. I tend to go for L’Oreal or Nivea’s skincare range. Sometimes pricey but the best I have found. Sorry I can’t really suggest anything for the ladies out there.

Have a bath. Firstly your friends and family will thank you for it. Don’t have it too hot as it will just dry your skin and out and you can risk damaging your skin. There are plenty of additives you can put in the bath, sea salts, balneum, oilatum. Not only do they help protect your skin, you can light a few candles, put on some music and relax so it’s quite therapeutic. If you prefer showers, you can wash with most moisturisers, Epaderm is good or you could get yourself a big tub of Diprobase or Boots Derma Care.

As it is coming up to Christmas there are a lot of offers out there so take advantage and stock up. Put some on your Christmas list and get the family to buy you a few bits. They will be presents you will definitely use and save you a lot of money.

I would like to say that the ranges I mention above are ones I always have in my cupboard, I am not sponsored by them or asked to promote them, hence no links to their sites. They are simply what I find works and may not be suitable for everyone. Our skin is unique, you are unique so find what works best for you.

If, like me, you have psoriatic arthritis as well then the cold is definitely not our friend. The only advise I can really give for this is wrap up in layers. I find then if I get too warm I can just shed a layer and cool down gently which may even prevent the effect of sudden cooling and heating on your skin. I know this is not so easy if you’re going out to a party, if you look after yourself most of the time then you can have those days where you maybe don’t layer up as much or use as much moisturiser. If you are looking for tips on what to wear, my friend The Flaky Fashionista always has great ideas. So now we’re set for the winter and the party season so get out there and enjoy yourselves and try not to think about psoriasis too much.

 

Anyone that has been following my progress on light therapy may have seen the improvements during the course. Well it has now come to an end, actually it finished just over a week ago. and so here are the results. I have just put the start and finish comparisons on this post. This is after seven weeks of UVA light therapy. How long it will last, I don’t know. All I know is that I am sleeping, not itching and not sore. It is a liberating feeling.


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The marks you can still see are more like shadows of what was there, little reminders as the skin heals. I do still have some patches of dry skin which I keep an eye on and even with skin this clear, I cannot let my guard down. It has been nice to not have to use quite as much sticky ointments and cream as usual though.

Thank you to the nurses at Broomfield Hospital for their care and advice. It has been a difficult seven weeks and I could never have done it without the support of my family, friends, my work colleagues and the nurses. Thank you all.

 

 

 

 

 

 

 

 

If you have been following my posts lately you may see that the light therapy I have been undergoing has improved my skin dramatically and I have now finished the course with practically clear skin. There does come a point where for the tiny patches of psoriasis that are left to be cleared, you risk burning your now healthy skin. The last week was getting a bit sore so we agreed to stop and really if you looked at me now you wouldn’t think I had psoriasis. So I should be happy yes? I am, I think, well mostly I am. Psoriasis has been part of my life for so long and will continue to be for the rest of my life so even with clear skin I cannot stop thinking about it, I just don’t have to think about it quite so much.

As soon as you become clear, especially after 4 courses of light treatment, I know this is only temporary and already thoughts of “when, not “if”, it will come back. I do have to remind myself that I should at least be happy for now and relax a little. So I’m relaxed and then comes another issue. It’s the summer, it’s hot and I’m planning to go to the local beer festival. So as I get ready I get out jeans, t-shirt, long sleeve shirt and baseball cap. I’m still covering up. Why do I need to cover up so much when I’m clear, why not show off my new healthy skin. Even with it out of sight, psoriasis is there nagging away in my head.

So I have got out the sunscreen to put on my arms, that’s fine I can cope with that. I will wear a baseball cap anyway as I can’t be bothered to do my hair and it’s actually could sun sense to wear a hat in this heat. Onto the legs. Hmmm, this is difficult. I have one pair of shorts, they’re old, scruffy and I wouldn’t wear them in public. In fact I’m not sure I would wear any shorts in public now. It has been over ten years since I last wore shorts in public in the UK. I will admit there’s a little bit of fear creeping in and I may be trying to find reasons for not showing my legs in public, I mean they’re a bit pasty and skinny, not a pretty sight. Yes I know this is a shock but I’m no David Beckham. So as it stands today I’m ok, I have no decent shorts so I can’t wear any anyway.

Did anyone notice I specified the UK before. On holiday I wear shorts, on holiday I don’t care, I’m not at home, I don’t know anyone. Here in the UK, in my hometown I become a lot more aware of my surroundings and my anxiety increases. I probably should see someone about that. I do laugh at myself sometimes though, thinking I’m worrying over nothing. The problem is that even though I know I’m worrying over nothing, it doesn’t stop me from having a slight attack of panic or anxiety.

So, my Dear Psoriasis, it’s nice to see you leave. You really don’t have to call, email or send me postcards to remind me you’re still around. I don’t think I could ever forget you.

Another two weeks have gone by and this is the business end of light therapy. The start is always a little depressing, you hope for an instant improvement but psoriasis is a stubborn old thing and tries to hang around as long as it can but what a difference one more week makes. The photos below show the story from before I started to week 3 and then week 5. The tunnel was dark and gloomy, in fact I thought it was a well and not a tunnel at all. Finally I can see the light. All the itching and soreness of light treatment with a few sleepless nights are most definitely worth it. Add in a mid therapy flare up and one week ago I could have given up on the whole thing. So here it is, one final push to clearance.

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Now anyone reading the title of this post who also follows Jessica and Psoriasis may think I’ve just nicked it. I have the same title as it’s about the same campaign. I was contacted last week and have read the details of this campaign with interest as it does highlight a very good point. The Psoriasis: Think Twice campaign is based on data collected by Leo Pharma which has shown that large number of psoriasis patients do not have regular visits to their GP to discuss their condition and have their medication reviewed. I have personal experience of this and I will admit that it’s not all the fault of the GP’s. I personally have thought for some time that Psoriasis is a condition that really needs to be controlled by specialists as GPs do not have enough expertise. My visits to the GP often revolved around me telling them how bad my skin was and what medication I wanted to try. Or I became lazy and just put in another repeat, at one point getting this doubled just so I didn’t have to do it so often or spend so much money.

The campaign also highlights the financial pressure put on patients and the economy. Many psoriasis patients buy over the counter and other lotions, creams and basically whatever we can get our hands on to go with our prescribed treatment. So as well as the medication not really being effective, some of us are also having to spend a lot more money. The burden on the economy is the cost of people having complications due to being on the wrong medication. The estimated costs of this is to the NHS is £500 million. There is more to this than just a financial cost, from the research it was shown:

“Lack of regular review highlighted by survey could mean that serious comorbidities such as diabetes, heart disease, high blood pressure and cancer are missed “

•  Psori  On the Psoriasis: Think Twice website there is more about Jess and her story along with 7 tips on speaking with your GP so you go to your appointments better prepared. Believe me, I wish I had known these when my journey started all those years ago. I am still learning and often forget to say things to the doctor. The campaign has also gained the backing of the British Skin Foundation who say:

“Skin d   “Skin decease can have a huge impact on all aspect’s of a person’s life, including self-confidence, career and personal relationships. One way to try and combat this is to ensure that patients have the best information and resources available to them to optimally manage their condition. Ensuring easily accessible advice and guidance is vital to prevent patients from becoming stuck on treatment cycles of repeat prescriptions where there  may be a more effective alternative. This is why we support the Psoriasis: Think Twice campaign”

                   For more information please visit the Psoriasis: Think Twice  website. It is there to help you take ownership of your treatment.

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Thought I would do an update on my UVA light therapy as I am possibly half way through. It usually lasts 6-8 weeks and given progress I reckon I will go the full eight weeks. So here are the pictures to compare my starting point to the end of week three. All pictures are in order of before and after, well during I guess is more correct.

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You can see that some parts are fading quicker than other but overall there is must less raised skin and it doesn’t look anyway near as sore. Still a little red which could be expected as I am being zapped with intense light every other day. It’s still be a little uncomfortable, going a lighter shade of lobster a few hours after each session and only one session so far where that redness lasted past the next morning. Still leaves me feeling a little sore and warm. Well worth feeling uncomfortable for a few weeks to have the result that I’m hoping for.

Let there be light

After all the problems with my consultants and even though the last consultant barely looked at my skin, I have now started light therapy. I was hoping for biologics this time as the light therapy, whilst usually effective, is a bit of a pain with 3 visits to the hospital each week for up to the next 6-8 weeks. I am on UVB treatment which means I stand in a box whilst the light does it magic. I’m on UVB which are the burning rays so there is no likelihood of getting a tan, possibly a healthy glow at the most. I have had this treatment before, 3 times before, and each time it has been less effective. I have not cleared so well and a flare up has occurred sooner each time. The last course I had gave me almost clear skin for about six months and even though that isn’t long, when you live with psoriasis, it feels like a lifetime.

My first session was about 30 seconds and today’s was about a minute. As the sessions go on, the time should continue to increase. It’s not an exact science though as it all depends on how my skin reacts. Your skin usually goes a bit pink some time after each session and this should die down by the next day, if it doesn’t there is the possibility that the next session will be reduced or even cancelled. So far I’ve had a little pinking but all feels okay and there is no visible difference as yet, it is very early days though.

There is an added issue this time round which is I have a cold. This creates a problem as my psoriasis often gets worse when I have a cold and if it develops into a coughing & sneezing cold then I will not be allowed in the hospital to avoid infecting anyone else. I am desperately fighting this cold to avoid this.

Whilst I’m on this course of therapy I have to be careful about exposure to sunlight. Luckily there hasn’t been too much sun so far but even on a cloudy day I have to remain covered up or wear factor 50 sunscreen. Even if I’m going to pop down the shops, I have to make sure I don’t expose my skin to the sun. Partly it’s so the nurses can be sure how much light I am being exposed to and partly to avoid burning by overexposure. There is of course the increased risk of skin cancer so all this helps to reduce that risk as much as possible.

I have decided to record the progress of the treatment this time, something I’ve never done before. Below are photos of some of the worst affected areas of my skin which I’ve edited to avoid showing off my flab. It is really strange looking at the pictures in full, especially of my back which I don’t see very often. I didn’t realise until tonight how much of my back was covered, you could play dot to dot on it. So this is how I look now and I will be posting updates as the weeks go on.

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