Finally In The NHS

It's finally happened. I've had my first appointment with the consultant at Guy's Hospital and he actually seemed to know what he's talking about. In fact, in the 3 hours I was there he confirmed my diagnosis, I had a blood test and a chest x-ray and he prescribed me pills to protect my stomach that I really should have been taking all along. Best of all I'm back there in two weeks for the results and to really consider whether to start on Methotrexate. Larry would definitely be jealous of how happy I am.

Shawn Lane - Playing guitar with psoriatic arthritis

Just a warning first - this will only interest guitarists!

There have been very few professional guitarists with psoriatic arthritis, or at least that have admitted it. In fact, I suspect that there aren't any working as freelance musicians. The demands of turning up every day ready to play something completely unprepared just don't work with a condition that leaves you not knowing how you will feel when you wake up the following morning. There has been one artist though that famously had it, and it doesn't exactly give a lot of hope.

Shawn Lane developed psoriatic arthritis at the age of 13. He still went on to become one of the most technically accomplished electric guitar players around. Fortunately for him as a guitarist, the illness seemed to mainly attack his legs; whilst he could play fantastically he had trouble walking around.

I'm not sure what treatment options were open to Shawn, and there's very little written about what medication he was on, but he certainly wouldn't have had the option of the newer biologic drugs. Methotrexate may have been an option to him but it's not  talked about and there's plenty of reasons why somebody can't take that. What we can be certain of is that he basically survived on steroids.

My experience of steroids is that they can completely clear your system of inflammation. They can pretty much make you fully functional. They're great - in the short term. Unfortunately they have some nasty side effects. After years of steroid treatment Shawn ended up incredibly fat. He also developed another condition that often goes along with inflammatory arthropathies - pulmonary fibrosis. Ultimately it was the pulmonary fibrosis and long term steroids that killed him. Ultimately though, I suspect the reason he was so dedicated to the guitar was his psoriasis at a young age.

Haircut in a Snowstorm

One of thee curses of psoriasis is that it can sometimes make everyday tasks stressful and embarrassing. I have undiagnosed scalp psoriasis. I say undiagnosed because at various times it has been diagnosed by GPs as eczema and seborrheic dermatitis, although they refuse to refer me to a dermatologist despite it being clinically relevant. The way that it responded to steroids and the pattern of flare-ups in combination with my psoriatic arthritis tells me that it is almost certainly psoriasis.

One of the cruel things, and something confirmed by psoriasis blogger Howard H Chang, is that there appears to be a relationship between scalp psoriasis and length of hair. In other words, just as it's time to have somebody get as close to my head as I ever let anyone my scalp decides to start shedding skin. To make it worse, the gowns that my barber uses are black. Every little (or big) flake of skin that falls out of my head is clearly visible for all to see. I have to sit there surrounded by my own skin in the full knowledge that everyone else can see it too. When it's just on my shoulders I can forget about it; I can't see it and people are too polite to mention it. At the barber it's there on full show.

On the other hand, though, I know when I sit in the barber's chair that he's about to give me 4-5 weeks relief from itching just by cutting my hair. And believe me it itches. It itches all day. It itches so much I'll pick at it and scratch it until it bleeds.