Today's guest blog comes from Maria Marziaoli, who talks us through her experience of using UV phototherapy to support her healing from topical steroid withdrawal.
“Can you confirm your name and date of birth please? Goggles on? Are you holding onto the handrails? All jewellery removed? Good, let’s get started”
My eyes are shut behind the blue tinted goggles I have just confirmed I am wearing. I am standing completely naked in what is, essentially, a big metal box without a lid. My feet are placed either side of a red X that is just visible underneath the paper towel I’m standing on. A groan and a clunk and the bank of UV lights lining the box spring to life in a burst of warmth and brightness. There is a faint smell of singeing, slightly reminiscent of pork scratchings. I stand completely still and let the lights warm my skin for the prescribed amount of time, idly counting the seconds as they pass. Another clang and the lights go out, their quiet hum replaced by an insistent beeping, letting me know it is time to open the door and get dressed.
This is my last session of phototherapy on the NHS. I shall miss it. It’s been really good for me.
What is phototherapy?
Phototherapy, also known as Light therapy or UV therapy, is a treatment which uses ultraviolet (UV) light for its healing effects. It is used to treat a range of skin disorders including eczema and psoriasis.
My phototherapy journey
I have been having twice weekly sessions of phototherapy at Brighton General Hospital since the end of September 2019, following a doctors referral. I’ve been going through TSW since February 2015 and for the last couple of years have noticed that my skin was much better over the summer months, and flared a lot over the winter. This made me hopeful that phototherapy would work for me as it mimics the effect of sunlight and reduces inflammation in the skin. However, it also carries similar risks as over-exposure to sunlight, such as burning. To avoid this, the doses of phototherapy are built up slowly over time. My first treatment was very short at only 30 seconds in the machine!
Before I began phototherapy, I met with the dermatology nurses who explained how it worked and what I needed to do to ensure the treatment was effective and safe. Being able to commit to twice-weekly sessions with no major gaps in-between was very important. The nurses advised me to moisturise well, 2 hours before the treatment, but use no moisturiser after that. This ended up being a bit of a problem for me; allergies meant I couldn’t use any of the recommended moisturisers and the products I normally used were unsuitable as they were oil based. In the end, I just used pure aloe vera gel on treatment days, and I had to sign a waiver to proceed as it was not a product on their approved list. I was also told not to make any changes to my appearance between treatments, such as wearing new jewellery or cutting my hair. This was to make sure that all my skin was exposed to the same amount of UV and the increases were consistent.
At each treatment, the nurses asked how I’d been since the last session and checked me over to see how my skin was responding. I did burn a couple of times and when this happened the treatment was reduced to the last tolerated dose, or skipped altogether if my skin was still pink. I had a few bad flares during treatment too, but recovered from them quickly. The nursing team were really good at noticing subtle changes to my skin that I hadn’t picked up on and answering my many questions. We talked a lot about my TSW experience too.
What does the future hold?
Today, after I’d got dressed, we talked about what to expect in future. I wanted to know whether the effects of phototherapy would last for a certain amount of time and whether I’d be able to have more treatment if I needed it. The nurses explained that the lasting benefits of phototherapy varied from person to person, but people often came back for further sessions. I would have to wait at least 6 months before the next course of treatment because of the risks associated with exposure to UV. I’ve got a follow up appointment scheduled with the dermatologist to see how I’m getting on without the phototherapy. In the meantime, the days are getting longer and I’m looking forward to spending more time out (sensibly!) in the sun.
Did it help?
It took a while to notice any changes but I definitely feel that phototherapy has helped my skin improve, particularly once I’d reached my peak dose. The quality of my skin feels different, stronger and more supple. The more persistent rashes on my back and neck have cleared and the overall appearance of my skin is less inflamed. I do still have some itchy patches but these are limited to a few problem spots on my neck and around my mouth. This is very different to my usual winter flares and my skin is more manageable than it has been in years.
Phototherapy is a commitment and it doesn’t work for everyone, but it’s been a really positive part of my healing process and I’m glad to have had its help this winter.
Maria is a musician and HE Quality Officer from Brighton. She plays violin with Slum of Legs and sings Neapolitan songs in memory of her dad.
She charts her TSW journey online at @tsw_eczemaria.