A diagnosis of psoriatic arthritis is not the end of the world although it may feel like it at first, says Tom Huntley
Around nine years ago when I was in my mid thirties my right knee began to swell and lock. At first the healthcare professionals did not know what it was; sometimes they drained up to 120ml of liquid from my knee. I had regular steroid injections that occasionally worked and occasionally didn’t.An exploratory operation followed by scans revealed nothing obvious.
Eventually I was referred to a rheumatologist who noticed the pitting of my nails and gave me a diagnosis of psoriatic arthritis.
I felt apprehensive. The first thing one does is research online and the statement that stuck in my head and got me worried about my future was ‘incurable disease.’
I was put on a high dose of prednisolone to contain the swelling. This worked and while I was reducing my dose I was put on sulphasalazine. It turned out I was allergic to sulphasalazine and I developed agranulocytosis, which was wiping out my immune system. Luckily this was spotted during my regular blood tests and I made a full recovery following a pretty scary three weeks of daily hospital visits to boost my neutrophil count.
Since then I have been on a mix of methotrexate, adalimumab and etanercept. I currently take nothing orally and am happy that etanercept is keeping everything in check as best as I could hope for.
Psoriatic arthritis has had a profound impact on my life. My fingers are badly affected – just typing this short amount has confirmed that – and I’ve had to give up a lot of sports and activities I enjoyed. However, I still try to keep active. I’m lucky I can play golf with the use of a trolley and regular rests (I also take ibuprofen before each round). I swim as often as possible and eat a balanced diet, both of which improve my symptoms. It can be difficult at low moments though.
The rheumatology department at University College London Hospitals has been fantastic as have my family and friends. Psoriatic arthritis is known as a hidden disease so it can be difficult to empathise as I look normal. For instance if I am struggling to stand on an underground train I’ll simply get off rather than ask somebody for a seat as I can’t be bothered to keep explaining.
The only slight complaint I would have is that politics stands in the way of changing drugs. It’s a pity that sufferers can’t be pushed more easily from one drug to another as it could improve quality of life for many.
Stay positive. A diagnosis of psoriatic arthritis is certainly not the end of the world although it may feel like it at first. You’re not alone. There are millions around the world suffering from the same or similar. Have faith in the system as drugs and treatments are getting better every year. Don’t be tempted to retreat into a shell… get out and about!
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