I was lucky enough to get UVB phototherapy on the NHS to help heal my eczema and perhaps help speed the healing of topical steroid withdrawal (TSW). They didn’t really know whether it would help but there was one other patient going through TSW who was also having treatment.
This blog is about my experience, what UVB therapy is, how it can work to help treat eczema and topical steroid withdrawal, the pros and cons and how it affected my skin.
How does it work?
The most common type of phototherapy used to treat eczema is narrowband ultraviolet B (UVB) light. This uses a special machine to emit UVB light, which is the best part of natural sunlight for treating eczema. Phototherapy helps to:
- Reduce itch
- Calm inflammation
- Increase vitamin D production
- Ramp up bacteria-fighting systems in the skin
Source: The National Eczema Association
What does UVB feel like?
Here’s my quick rundown of what the therapy is like.
- You go into a private room where the UVB machine is, undess and apply moisturiser all over.
- Once you’re naked and moisturised you ring the little doorbell to tell them you’re ready and step into the tardis like machine, making sure you put down the paper foot protector on the floor.
- You have to stand the exact same position each session to ensure an even coverage from the UBV rays
- You must also remember to wear eye protection (and for guys, a sock over your willy, there is a hilarious poster reminding guys to do this that makes me chuckle every week)
- The nurse runs through your personal details, checks they have the correct information, agrees the next dose, checks you have eye safety, sets it going and leaves the room so you can get dressed again afterwards. The feeling is divine, like a warm yellow glow that filters through my closed eyelids, taking me to another land, with desert sands, cactus and aloe and a huge orange disc of sun beating down. I love that feeling of sun warmed skin.
- That’s it! The treatments begin at about 10 seconds which increase in increments of 1 or 2 seconds and sometimes staying the same for a maintenance dose.
- You could go up to 30 sessions if it is doing your skin some good. I got just over half way through treatment before lockdown and my last session then was 33 seconds long.
- Treatment may stop earlier if it’s not working or making your skin worse.
- For me it can make my skin feel a little itchy after a treatment but I’ve not noticed any adverse skin reactions.
- TSW gives you so many cycles of flare, burn, flake and peel you do feel sunburnt on a regular basis anyway, but I don’t think the UVB is burning my skin.
- You must avoid being in the sun while you do UVB as it could be dangerous for your skin.
- Always stand in the same position each week.
- Don’t have a drastic hair cut or expose skin that was previously covered half way through your treatment course as this skin could burn.
- Remember to moisturise before each session using an emollient or cream that is not plant based as plant oils can react with the treatment and cause burns. I use Balneum before each treatment.
- Be aware that they are used to patients also using topical steroids and encouraged me to do so and up the dose. Explain to them what TSW is, why you are doing it and stick to your guns. My nurses now understand and have accepted my right to choose how I have this treatment. If you would like to download a handout that I’ve created to explain TSW visit www.whatallergy.com/freeresources
- Take notes, and make a record of each treatment length. Ask questions. I found that whilst they did explain what would happen I’m still not sure why or how it works and I asked a lot of questions.
- Take your own emollient or moisturiser as they will try to make you use theirs otherwise and it may not be suitable for your skin. Annoyingly they seem to requite the use of paraffin based creams but try to find a good one you can trust such as Double Base, Diprobase or Balneum.
Is it working?
This is so hard to tell whilst going through TSW as the skin flare, burn, crust and flake is a regular cycle.
My first session was on 19th February and it all stopped in the middle of March when Covid-19 put a stop to it being safe to continue. I managed to do 18 sessions before they stopped.
The nurses at the hospital thought it was working from their regular observations of the redness of my skin. I feel I am slowly improving, but them deteriorating, or not quite that but still experiencing days of intense itching and the flare, crust, flake cycle. These have got easier though and I do feel I am healing. Is it UVB that helped? It’s impossible to prove this for sure.
Would I have continued healing anyway? Who knows.
I think my face is slowly healing from my hairline and ears forwards. I’m still getting really itchy, still getting flares, but recovering fast and seeing some really lovely smooth skin coming through.
In the photograph above I think you can see a difference on my forehead and around my eyes. Less creases, wrinkles and smoother looking.
I’ve now started the treatment again since lockdown has eased. Annoyingly it has to start back at the beginning so I started last week on 10 seconds again. They hope to take me up to 30 seconds.
Is anyone else doing UVB therapy for eczema? Has it helped? Anyone tried it during TSW? If you’d like to try it please feel free to ask any questions and I’ll do my best to answer them
Liz Rippiner says
Ive had it before and yes it works for psoriasis. I was due to start a course as the lock down began but of course it was cancelled and not restarted yet. However I had to wear a shield over my face I think if I remember rightly?as well as goggles. My skin is terrible at the moment because of all the stress so I hope I get called back soon. It costs me quite a lot as it is a half hour journey each way and three times a week the diesel adds up
Ruth Holroyd says
Hi Liz, yes it’s quite a commitment. It’s a 45 minute journey with no traffic for so that’s almost two hours out of my day, three times a week. I didn’t wear a shield as they hope it will heal eczema on my face but you do need to wear goggles or eye protection. I kept my eyes closed as they want to see if it can also heal eczema on my eyelids. I know the sun helps anyway so hoping this will help. So much sun anyway outside that I’m really nervous of getting extra exposure. Slinking around in the shadows, covering up and going out early and when the sun sets. Hope yours starts up again soon and sorry to hear the stress has been having an bad effect. We are really lucky to get this on the NHS. I am very grateful.
I am suffering from tsw on my face, around my eyes,eyelids and mouth. I have just bought a handheld uvb lamp (from a reputable source) and uses the same tubes the hospital use.
I am desperate now and had no choice as you say due to Covid.
Did they advise it was safe to have treatment with your eyes closed instead of goggles as that is where I am suffering most my eyelids.
Ruth Holroyd says
They let me just have my eyes closed, as my eyelids also, like yours, were really bad. Always have eyes closed tight and be really careful though. I think it did help, my skin certainly improved while I had the treatment.
I think I have heard of you on my TikTok and I thank you all for making TSW known more. I have been using phototherapy before I knew what it was currently having a flare and aloe vera and CeraVe daily moisturizer with hyaluronic acid is helping with this flare because this will be the first week I’m weening off completely of topical steroids even though I’ve been doing phototherapy for a whole year. I’m concerned if you consistently went when you had flares ?
Ruth Holroyd says
Hi Shanna, yes that’s me on TikTok! Thanks for all your support. My gosh it’s a tough crowd on there, but also some lovely people and just so pleased I can share about TSW to such a huge audience. I did UVB in the summer of my second year in TSW and I think it did help. my clinic only let me do it for 3 months I think as it has a lifetime effect. so you can’t do it all the time. I did go through flares and didn’t miss a session, but I tended to have a flare and flake off daily at that point, and skin was as good as it was going to be when I went. Only a few times if felt really raw when I went, but I don’t think that for me it made things worse. Some people do experience mild burning from UVB though so we are all different. I’d say this is something for short term use. However if you found it really helped, check out also Red Light therapy. You can get a unit to do this at home and I’m thinking of doing this next winter to help me get through it. This last winter was brutal for me.