The Generation X Files

You know that old saying, “Life begins at 40”?

In my case, I’d have to disagree. I’d have to say my life has begun again at 50. Because, it’s at this age that I’m finally (hopefully) starting to win the 35 year battle against my faulty immune system. What I’m about to share is not an endorsement of anything and I’m not suggesting treatments. This is my own, personal experience.

It took 15 years for my genetics to catch up with me. That’s when the first angry, purple patches of pain appeared on my hairline and knees. We knew it was psoriasis before my mum had booked the doctor’s appointment to confirm it. My aunt has had it for most of her life too. Unfortunately, that meant I already knew a lot about how difficult a disease it is to live with.

At first I was able to keep it under control with topical treatments. The problem is with a disease like psoriasis it becomes a vicious cycle. The more you worry about it, the more stressed you get. That stress in turn can make the condition worse. Your body becomes like a ‘whack-a-mole’ game of angry skin patches – you smack down one only for another (now angrier) one to pop up almost instantly somewhere else.

By the time I was a young adult, it was severe chronic plaque psoriasis¹ It was on pretty much every part of my body. I used prescription scalp applications/special shampoos, topical creams for the morning and ointments to apply before bed. Here’s some of the things I learned that aren’t in the enclosed instructions that come with topical treatments:

• There is no way possible to avoid them staining your clothes and bedding
• When you get dressed, the sticky properties of the goo you’ve applied will try to bond with whatever you are wearing
• They are sometimes itchy as they dry. You must resist the temptation to scratch
• Sometimes as it dries, the goo you’ve applied turns into a gritty consistency. * Tip – A pair of tights under your trousers can help avoid looking like an extra in the Great Escape!
• The night-time goo will stick to everything! Try to sleep with raised toes and fingers to raise the bedclothes and form a makeshift tent*. This will help protect your body from fusing with the duvet while you sleep (*similar to a sunburn protection tent)

Over the years I’ve tried lotions, potions, praying to God, considered bargaining with the other guy…….Almost anything in my pursuit to feel ‘normal’ again. To have some relief finally.

What follows are some of the treatments I’ve tried over the years through various Dermatology departments of hospitals.

At 25, I spent two weeks in hospital for treatment with coal tar. My psoriasis plaques were covered in the thick tar by one nurse and another would apply stretchy bandages over the top. (Think Egyptian mummy with its head exposed. And with pajamas on over the top of the bandages. Ok, that sounds less like a mummy but you know what I mean!)

I also had it applied to my scalp at night. In the morning, I’d wash it all off with liquid paraffin in the shower. That’s the only thing that can remove the sticky tar. After the shower, once dry, the process would start all over again.

It felt weird at first but I got used to it. You’re not ill in a way that confines you to bed but the process is so involved you need to be in hospital. At the end of the fortnight my psoriasis was in remission.

I’d like to be able to say that was the end of that. But, it was only a temporary reprieve. I think it lasted less than two months and soon the psoriasis was starting to make a reappearance. The plaques I thought had healed were just paused, ready to flare up again.

It was during that hospital stay I found out I was likely to develop psoriatic arthritis. My disfigured nails and ‘sausage fingers’ were good indicators. I would be one of the thirty percent of people with psoriasis who go on to develop it in later life. Yay! Because the psoriasis itself wasn’t enough to deal with?

In my thirties I tried ultra-violet light therapy treatments. This involved taking a pill (or a bath) containing psoralens, to make me more light sensitive. I’d then use a special tanning booth at the hospital. The psoralens make you so light sensitive that you have to protect your eyes with sunglasses for 24 hours after you’ve taken them in pill form. And during that time, you have to avoid the sun like a vampire at dawn!

I went for treatments twice a week before work then I’d go straight to the office. It definitely didn’t feel ‘cool’ wearing shades at my desk in the middle of winter. But, I did have a nice tan with no lines!

The problem with that type of treatment is you can’t do it long-term. Treatment is typically limited to a finite number of courses over a lifetime to minimize the risks of skin cancer. I’d exhausted that option within a few years.

By my fortieth birthday, I was starting to get more serious twinges of arthritis. Now my hospital appointments were Dermatology and Rheumatology combined and s**t was starting to get serious!

That was when I first tried Methotrexate.

It is used as an immune-system suppressant and when I first tried it I was self-injecting it at home once a week. Unfortunately the side-effects were brutal and became too much for me. At the time, the only other option was a similar medication that would likely give the same side-effects. After 8 months (during which I’d got to know the toilet bowl a little too well) I decided to leave it for a while…

A little too long almost….

A bit like this post!! That’s why I’m going to end it here for now and do a second one about this past year. The one where I started life over again after beginning treatment with injectable biologics…

Citizen Jane x

1. Severe chronic plaque psoriasis is typically classified using a combination of Body Surface Area (BSA) involvement, the Psoriasis Area and Severity Index (PASI) score, and the Dermatology Life Quality Index (DLQI).  ↩︎