This morning, I went for a swim. TLC and I were on a weekend away at a posh hotel, and she urged me to give the spa facilities a go. Twenty leisurely lengths of the pool and a dose of sauna heat and steam room sweat opened up my pores and left me achy but glowing.
At one point I shared the steam room with a Spanish guy in budgie-smugglers. We exchanged a friendly nod, and that was it. A simple, normal moment of small luxury.
It had been at least fifteen years since I had been able to walk into a pool or spa area with any hint of confidence. Even a year ago, the Spanish gentleman would have looked at me with a mix of horror and disgust, and probably walked right back out of the steam room.
(TW: The following contains graphic descriptions of medical symptoms).
I suffer from a version of a chronic immune-system condition commonly known as psoriasis. It causes the skin to over-produce, leading to plaques of sore, cracked and flaking skin. The urge to scratch is constant and almost unbearable.
There have been different degrees of exhibition. In the early stages the plaques were concentrated over my scalp and face, giving me a mask of inflamed raw skin across my brow and around my eyes. Later, after a first batch of treatment cleared what I now call Version One, my psoriasis retreated, regrouped and began again from the neck down.
At its worst, probably eighteen months ago, there were great patches of crust and scurf across my chest, belly and legs. My back and butt looked as if someone had blasted them with buckshot. At the lowest of points, I had raw patches on my hands and arms.
I could not bear to look at myself in the mirror.
Across the last seventeen years, I have tried almost the whole gamut of treatments. From Chinese herbs and acupuncture (useless, but the needles were great for relaxation) to the UV light treatment which solved Version One (a process remarkably similar to using stand-up tanning booths, with the same risk of sunburn and, ya know, skin cancer).
I have gone through gallons of creams, pastes, unguents and ointments. Steroids, which thinned the skin to the point where a rough rub with a flannel could cause bleeding. Coal tar emulsions which made me smell like a fresh-laid strip of tarmac.
Eventually I was moved onto the more serious stuff–immuno-suppressants. Acetretin, folic acid and finally methotrexate, a compound that in higher doses is used in cancer treatment. I was on a carefully regimented regime of pills that held the flare-ups at bay for a while, before the plaques would reform, angry and bloody at my attempts to beat them down.
Psoriasis started to appear in my writing. In a story set in an alternative Soho, it manifests as a defensive mechanism called tocsari, an airborne virus that destroys outsiders to the realm by causing them to erupt in bleeding patches of pustular ulcers before they horribly melt into a pink sludge.
I’m not the only sufferer to creatively externalise my disease, of course. Dennis Potter famously wrote his treatment for rheumatoid psoriasis (yes, that’s another thing to look forward to) into his magnum opus The Singing Detective. Horror director Eli Roth’s first feature Cabin Fever featured a malevolent disease that caused his attractive cast to bloodily shed their skin. Kim Kardashian is a fellow sufferer. I’ve yet to see how psoriasis features in her work.
Why is there no absolute cure? Well, because no-one really knows what causes it. The shift in understanding from psoriasis as a skin- to a immune-system disease happened comparatively recently. It’s heartening that a ton of research has been done around psoriasis over the last ten years, but the fact remains that there’s no one factor. Genetics plays a role, as does stress. Light helps a lot, as apparently does salt. There are plenty of reports of people returning from a holiday by The Dead Sea or volcanic spas in Iceland almost completely cured.
However, these are treatments for the symptoms, not the disease. But we’re getting closer, and the responses on offer to psoriasis are increasingly sophisticated and successful.
Which brings us to October last year. I was called into hospital for one of my regular, depressing consultations, with the expectation that I would be put onto a higher, more risky dose of methotrexate, with all the associated side effects and potential for liver damage (again, whoopee fun times).
Instead, I was seen by a new doctor, who cheerfully confirmed that I was now a suitable case to be put onto Adalimumab. This is a drug mostly in use to ease the joint inflammation associated with arthritis. In use with the psoriatic form of the condition, it was proven to quickly reverse the over-production of skin cells that led to the plaques. Better yet, it could be targeted specifically to the gene that caused the problem in the first place.
The one problem? It was under patent, and expensive. In order to qualify, you had to be seen to be worth the cost.
I had fifteen years of treatment under my belt, and was in the worst shape of my life. I was coming close to the end of my tether with The Skin Thing. I had to keep my nails trimmed right back to keep the scratching at bay–if I didn’t I would leave bloody tracks and drifts of dead skin everywhere. I couldn’t use light coloured towels. Crisp white bedsheets were a disaster. I felt one step removed from a leper.
I filled in a questionnaire, taking instruction not to underplay my real feelings about the situation (‘don’t be English about this’, the doctor said). Then she waved me into a waiting room, told me to strip to my undies and wait for her to come in and assess me.
Interesting sidebar: I have no issue with dropping my kecks in front of strangers anymore. As long as they ask nicely.
It was a long, nervous couple of minutes.
Would this new treatment work? Would I even qualify? What if I didn’t? I’d started to notice dry patches in my hairline. Was Version One set to make a return? There was a mirror in the room. I scrupulously avoided looking in it.
The doctor walked in. She took one look at me. ‘Oh,’ she said. ‘You absolutely qualify. Put your clothes back on. Let’s get you sorted.’
January. I sat on my sofa at home, holding an epipen filled with a clear liquid. Adalimumab, under the brand name Imraldi. As I was approved for treatment, the patent expired on Humira, the single version available at the time. At least three other variants were now available, and the price was starting to drop. Hopefully, this means more and more people will get access to the drug.
The nurse sitting across from me nodded. ‘Whenever you’re ready, Robert.’
I pulled up my t-shirt. As instructed, I found a fatty bit of stomach (not difficult), squeezed it and put the business end of the pen to the skin. I pushed.
Click. There was a window in the epipen, and I could see the dose drop. There was a faint, sharp pressure at the injection site.
Another click. The pressure eased. Done.
The nurse smiled. ‘There. That wasn’t so bad, was it?’
I smiled back. My mind was whirling. Was that it? Was it really that simple? There was barely a mark on my stomach from where the needle had gone in.
‘No,’ I said. ‘Not so bad.’
Six weeks later the plaques were gone.
I started to see an improvement at the end of the week, although at the time I convinced myself that it was my imagination. But no. The clumps started to break down and smooth away, from hand-span to finger-width to thumbnail to gone.
This Easter, I finally took a deep breath, and looked at myself in the mirror. I didn’t have to look away.
I carry the marks still–there’s a staining that fades much more slowly than the prime symptoms. I can point out to you where the worst of it was. Ask nicely and I’ll drop my kecks and show you the big stains on my thigh. They are all that’s left of a war with my skin that finally took a nuclear option to win. And they’re fading too.
Now what? Well, I’m on Imraldi for the duration–it’s a chronic condition that will need continuing care. I get a fresh delivery of preloaded epipens once every six weeks or so. Once a fortnight I have to grab flab and stab. I’m still on a low dose of methotrexatate and folic acid, just to make sure my immune system doesn’t raise up a banner against the Adalimumab. At my next review, that may drop completely.
But otherwise that’s it. I’ve taken to wearing shorts in warm weather again. I can look in a mirror without despairing.
And I can share a moment with a Spanish fella in budgie-smugglers in a steam room with absolute confidence. Now that’s progress.
If you or anyone you know suffer from psoriasis, your GP will refer you for treatment to one of your local specialists. The disease is on the rise, so please be patient while you wait to be seen, but be certain that while there may not yet be a cure, there is certainly hope.
For further information, head over to The Psoriasis Foundation, or Ask For Clear.