What makes for a supportive doctor/nurse when you have psoriasis?
When a person gets on well with their doctor or nurse and feels there is progress being made with their skin, frequent appointments were reassuring....
Topical treatments (applied to the skin) are one type of treatment for psoriasis. Sometimes this is the only treatment that people need to improve their skin condition. Everyone we talked to had used some kind of topical treatments for their psoriasis. Most had used several types, such as:
Many said there’s a ‘progression’ of treatments for psoriasis over time and severity. Some people found they could usually keep their psoriasis ‘at bay’ with only emollients (moisturisers) but needed steroid creams or other active treatments for flare-ups. Stronger steroids or other treatments were sought if a flare-up continued for a long time or became worse. Russell saw steroid creams as the ‘first port of call’. Damini explains: ‘it was [steroid] creams first and they weren’t really working. And then they prescribed one of the stronger ones [steroid creams], that wasn’t working either, so then, last resort was phototherapy’.
Young people often referred to their topical treatments as ‘creams’ and sometimes didn’t know what the active ingredient was in it. Other times, there was confusion about the types of topicals – for example some people mistook Protopic (tacrolimus) as a steroid.
Some people found topical treatments worked well for their psoriasis and were glad they didn’t need other treatments like phototherapy or systemic medicines. Others felt topical treatments didn’t work for them and were fed-up with going back to the doctors for new ones. Emollients and steroids were a big part of Abbie’s childhood: ‘that’s pretty much all I did, just creams, creams and creams’. Going back for more creams could be expensive for those who pay for their prescriptions. Even if a topical treatment didn’t work, Jack sometimes put off making another GP appointment because he didn’t feel assertive asking for something else.
While there are some importance differences between topical treatment types, some shared issues were mentioned:
Where people had psoriasis on their body affected their use of topical treatments. Many people had help from family, friends and partners with applying topicals to patches they couldn’t see or reach, such as on the back. But, as Carys pointed out, ‘you can’t always have somebody there to help you’. Megan couldn’t go on a residential trip during primary school because she needed her mum’s help with applying topical treatments.
The skin on the scalp is a common place to get psoriasis and topical treatments for this area can have particular problems. Medical treatments for scalp psoriasis include leave-in ointments/creams as well as special shampoos (washed out). People with long hair found it tricky to get the treatment directly onto their scalp. Some people said overnight scalp treatments can be especially unpleasant with an off-putting smell and getting on pyjamas and bedding, which could affect their sleep. Steven experiments with ways to keep topical medications on his scalp overnight, but admits some are unusual such as making ‘hats’ out of tinfoil.
Many found topical treatments became a big part of their lives. Damini says she tends to ‘plan my day around my creams’ and there have been times when Adam felt he had become ‘almost OCD’ about his. Having a routine for psoriasis topical treatments can be hard. Applying them can be time-consuming, especially if the person has lots of small plaques. Adam says he tends to ‘slap it [steroid cream] on’ as it’s not easy to see each small patch of guttate psoriasis. Simon worried about losing his routine of using topical treatments when he moved out of his family home for the first time. He tried hard to ‘keep a definite schedule going’ around work shifts.
Waiting for creams to dry on the skin can stop the person from doing other things. Some people said there’s not enough time to do treatments before classes or work. Megan does her homework before applying topicals, otherwise the paper gets greasy. Zara has special silk socks to wear overnight to keep the topical treatments on her feet.
Another concern for some people was finding places to comfortably put on their topical treatments. Many said they don’t like others seeing them apply their creams, which was an issue especially for those with roommates, housemates and partners. Louis sometimes re-applied his creams (emollients and steroids) in the toilets during the day when out of the house. His housemates sometimes brought his treatments to him if he had left them at home.
Getting through creams quickly and running out was a worry for some people. Adam found it stressful running out of creams whilst at university. It meant he had to make a doctor appointment and usually ended up seeing a different GP each time. Hannah says discontinued topical treatments can be an issue too – she was prescribed a scalp solution but the pharmacy no longer stocked it.
When a person gets on well with their doctor or nurse and feels there is progress being made with their skin, frequent appointments were reassuring....
Topical treatments (applied to the skin) are one type of treatment for psoriasis. Sometimes this is the only treatment that people need to improve their...