I’ve never really spoken about this before, but this week is Psoriasis Awareness Week and a couple of pieces I’ve seen already have made me want to share my own story. I’ve suffered with it since I was about 19 and after trying every treatment there is, I’m finally on the mend. But what’s going on?
Psoriasis is a disorder of the immune system, which means that I am attacking my own skin cells, causing them to grow faster. Everybody is constantly growing and shedding skin, that’s perfectly natural. During a flare-up, I can grow as much skin in 2 days as a normal person does in a month. I have plaque psoriasis, which is large areas of swollen red/silver skin. I can (and have) get patches anywhere; mostly back and legs but I’ve had it on the soles of my feet and inside my ears. Last spring, my hands were so bad that I couldn’t form fists. It’s too painful to sleep, and sometimes too painful to wear anything but the loosest clothes, so I’ve missed work. It’s made worse by stress, and so often I can fall into an infinite loop. It’s not a cleanliness issue, although showering is also very painful.
So what are the treatments? They start you with steroid creams, which basically tells your immune system to calm down. Eventually though your body learns to compensate and so they stop working. I had a all-over flare up, so we tried phototherapy. This entails going to hospital 3 times a week, getting naked and standing in a cupboard that throws UV rays at you. That takes about 8 weeks, and can cause sunburn. You can only have it so many times in a lifetime. That worked really well for me, although you have pigmentation that stays in your skin for 6 months or so, and nothing can fix that.
Like a third of psoriasis sufferers, I have arthritis that’s caused by it. It’s in one toe and one ankle. Treatments for that include methotrexate (the stuff they use in chemotherapy) and cyclosporin (a drug used to prevent organ rejection). They basically turn your immune system off, with all the fun that entails. I got sick easily and for longer than other people. It makes you feel sick. Methotrexate can cause your hair to fall out, your bone marrow to fail and sometimes your lungs, so I had to take folic acid along side. When that stopped working we tried cyclosporin, which has the very unfun side effect of making all your soft tissues feel like they’re burning (palms, ears, various places downstairs). I was on them when I went to Render Conf, and I caught a cold so bad that I had a week off work.
I’m currently on the last treatment there is. It’s very expensive (£10k a year) and it’s a self-injectable. It’s more targeted and so I have less side-effects although I still need to watch the immune system. I have to have the flu jab and that always makes me feel rotten.
It’s a terrible condition. It’s disfiguring, embarrassing and painful. It means I can’t donate bone marrow, or give blood. It means I still can’t go swimming because of all the pigmentation and scarring. The drugs they give you are awful and make you feel sicker. You can’t have children while you’re on them, not an issue for me, but being pregnant and fully flaring must be awful. We aren’t dirty, we just have a body that’s constantly trying to kill us. Fun fact, in very severe cases, it can cause complete skin failure and kill you. I’m pretty good now, in fact I’ve been given the go ahead to get another tattoo. It’s going to feel pretty sweet.