This year, we’ve been working hard to find men and women with psoriasis to help us test a promising new treatment for the disease. Patients have responded to us in droves, but for this early stage of testing we specifically need people who are quite severely affected (having psoriasis covering an area on the body larger than 10 handprints) but who are not currently using the strongest forms of medication.
Enter Danny! A long time psoriasis sufferer, Danny is the first volunteer to have checked into our clinic and been dosed with this potentially breakthrough drug – and he’s travelled all the way from Swansea to get involved. We had a long chat about how psoriasis has affected him and his hopes and expectations for the clinical trial.
‘In Welsh folklore, there’s a goddess called Olwen, which means ‘white trail’. Wherever she goes, she leaves a trail of white flowers in her footsteps, and I feel a bit like that- leaving white flakes behind me. I don’t normally sit on dark-coloured furniture like this!’ he tells me, pointing to the navy blue settee in our rec room.
‘Generally, other people are very accepting of my psoriasis – they either don’t notice it or are too polite to say anything. The worst effect it has is on my own self-esteem. It makes me feel unattractive. I feel as though other people will see me as a little bit freaky.’
‘I have tried several different treatments in the past. This is where I used to apply coal-tar’ he shows me patches on his shin where his skin has actually been stained brown. ‘It wrecked my clothes and it smelled awful! It’s very hard to love yourself or even anyone else when you’re stinking like a shed!
‘I’ve also tried acupuncture, which was costly and time consuming and can take years to work. I started taking Vitamin D after noticing that it was improved by holidays in hot, sunny countries. But I got to a point where I just felt like my psoriasis was too severe, and that nothing I did would make a significant difference.
‘In my experience, it is hard to find helpful information about psoriasis – I haven’t found any good advice on the internet or even a good explanation of how and why people are affected by it. So far, I haven’t even found a Doctor who has been able to do anything other than be sympathetic. In a way, I feel like I’ve become an expert on my own psoriasis, but I’ve had to learn everything through trial and error. It would be great if research like this made it easier for patients to be diagnosed, to understand their condition and to control it effectively.’
I asked him if he had any concerns about taking part in testing a brand new drug?
‘Fortunately, I have a family member who works in a clinical environment, so I already knew that trials like this happen all the time and that safety is taken really seriously. I was a little bit nervous when I learned that the drug is an immunosuppressant (a type of drug which works by reducing the body’s immune response), but once it was explained I thought -Well, somebody has to do this and I’m willing to be the one who gives it a try. It’s a bit like air travel or riding a rollercoaster – there is some risk involved, but wasn’t going to let that stop me.
‘What worried me more is that I really don’t like being told what to do, when to eat, things like that, so I thought the residential part of the study might not agree with me. But the staff have been so welcoming and good humoured – there’s a real sense of community in the clinic and that’s made me feel very comfortable. Also, I’m really enjoying having this time to think – I’m a musician, I run a business (http://www.trac-cymru.org/en/) and I have a family, so life can be pretty hectic.
‘One thing I am really missing is caffeine, which I can’t have while I’m staying here. I am surprised at how much I’m craving a really good cup of coffee. I am actually fantasising about making up a pint of hot water with two teabags and downing it!’
With new drugs like this one, we cannot guarantee patients who volunteer that they will see a therapeutic effect. We need to answer a range of questions like ‘What is the right dosage level? Should this be taken on a full or empty stomach? How long does it remain in the system?’ before we can start assessing how successful it is. With this in mind, I asked Danny what his hopes were for the study?
‘In the short term, I’m seeing the study as a chance to better understand the condition and to think about how I manage it. I’ve accepted it as part of my life for a long time now, and this has made me reconsider whether there could be a medical solution. I will certainly start managing it more actively.
Of course I do hope that this research has a positive outcome for psoriasis patients in the future. Some people just get psoriasis, no-one really knows why, and that sucks. It would be great to think that something I’d done made a difference. That motivated me to take part much more than the money (volunteers receive from £100 per day for participating in clinical research)’
But does he think there’s any chance he might see more of an immediate improvement in his own skin?
‘No, I don’t think so. At least, I don’t want to let myself think so. I’ve got used to being disappointed, so at this point I really don’t want to let myself believe that it might work. If the treatment improves it a little bit, fantastic. If it makes it go away (which I don’t think it will)… well, that’d be fun.’
I’m pleasantly surprised when Danny comes back 2 weeks later for a follow-up appointment and asks to see me. He shows me his arms and legs, where the psoriasis plaques are significantly less red and inflamed, and he tells me that the ‘scalyness’ which meant he left a white trail is almost gone.
Of course, we cannot say that all of our volunteers on this study will see such dramatic results, but we’re all delighted that the trial has made such an encouraging start.
‘The physician I’ve just seen tells me that it could end up looking even better than this once the dying skin cells have sloughed off and been replaced. I’ve not known my skin to ever improve so drastically over such a short period, so I am very happy with the result. I’d definitely recommend anyone who’s considering it to get involved.’
If you think you might qualify for the study or you would like to find out more about any of our current trials, give us a call on 0113 394 5200 or apply for our paid clinical trials and we will call you within a few days.