Saturday, 9 November 2013

Skip forward 32 years...

Wow, that previous post makes fairly grim reading doesn't it? I thought I should quickly pop back and say that even though things did get even worse, several times, they also got significantly better, several times. There is light at the end of this tunnel. I don't want anyone to think that it is going to be all dead skin and despondency around here.

I've had so many different treatments over the years that I'm seriously considering submitting a data subject access request to my GP to help me remember them all. What I can say with certainty is that I'm currently on Stelara injections and have been for around two years.  Between that, Dovobet and various moisturisers, my psoriasis is currently reasonably under control. Now all I need to do is fill in the 32 year gap in between the previous post and this one. That might take a while, so I'll have a think about the best way to tackle it. In the meantime, do please leave a comment below if you have any suggestions or questions.




That difficult second post

So, after a disgracefully long wait I finally get my act together and get on with writing this thing. Let's start with some back story.

My psoriasis appeared when I was 17 years old. It started as dry scaly patches of dead skin on my elbows. Quite a common starting point I now understand. Within a few weeks it had covered my entire torso, scalp, arms and legs but not, mercifully my face or hands. Small mercies eh? It was thick, dry, itchy and unbelievably sore. The skin on my torso looked like a crocodile's and fell off in huge scaly flakes. If you've seen Austin Powers in Goldmember, you'll know exactly what I mean, only none of mine were 'keepers'. It was embarrassing and uncomfortable. I covered up, scratched until I bled and cried a lot.

I went to my GP who prescribed a steroid ointment (Dermovate), coal tar shampoo and bath additive. He told me that the steroid ointment was very strong and that I should use just one fingertip of the ointment to treat my whole back. It was laughable. It just disappeared down the cracks in the skin. I was using a large 100g tube a week and it should have lasted at least a month. I now know that what I should have been given was a proper moisturising regime, but more of that later.

The thing that troubled me the most though was my scalp. I had, and still have, a thick head of hair, although there's considerably more salt than pepper up there these days. The psoriasis covered the whole of my scalp and the scale built up until it was around 3-4 mm thick. More in some patches. Quite apart from the dandruff, which was embarrassing, it was incredibly uncomfortable and unsightly. It became visible through my hair and the coal tar shampoo turned it a horrible yellowy-brown colour. Like wearing a nicotine stained crash helmet underneath my hair. Incredibly distressing for a teenage boy. 

To treat it, alongside the coal tar shampoo, I was given a scalp lotion with salycilic acid in it to break up the dead skin and allow the steroids access to the live skin underneath. It didn't work. It was like trying to break up a brick wall with a toffee hammer. What I resorted to was treating my scalp with steroid ointment, letting it soak in for a couple of hours and them combing the crust, and a fair amount of hair out with a steel comb. When I'd finished, my scalp was red raw and stinging. My hair was greasy and thin and no matter how many times I washed it, it would stay greasy for three or four days. But it was worth it because the crash helmet was gone. The relief was only ever temporary and I'd repeat this painful process about every couple of months, putting up with the greasy hair as a tolerable price to pay. In later years I have used the same method, using Emulsifying ointment instead to soften the scale and a flea comb to remove it. It still hurts like hell, but it washes out afterwards, so no greasy hair at least. It's a miracle frankly that I've never developed an infection in my scalp. This seems like a good time to remind you of my disclaimer on the first post...

The picture I am trying to paint here is of a young man with an extremely distressing and painful genetic skin condition getting little or no good advice from his GP. This was the very early 1980s and there is a very long way to go in this story, but I reckon that's enough for now. Stay tuned 

Sunday, 3 February 2013

So, what's the story?


Hi, my name is Simon and at the time of writing, I have lived with psoriasis for 32 years. This blog is a place for me to talk about the various treatments I have had and share some of my experiences. I have no agenda other than to share, in the hope that someone else might get something for themselves out of it. A laugh, some reassurance, whatever. I hope you find it readable at the very least and possibly even useful or entertaining.

DISCLAIMER

I am not medically qualified in any way. Everything I write here is from my perspective as a psoriasis patient. If you decide to do something because you read about it on this blog, then that's on you. This is my story, not anyone else's and what works or worked for me may well not be appropriate for you. Don't self medicate, for pity's sake talk to a professional.