Any experience with Phototherapy / UVB / UVA1 ?

[andy7551]

Hi all - my main problem is swollen puffy sore fingers that won't flex - I've experienced this since January when all my fingers (except 1 thumb) swelled up and stayed that way for several months. Through the summer things improved a lot, I get outdoors quite a bit and with a bit of management (compression gloves etc.) I could get the swelling down by the afternoon, and experience some normality - although every morning I wake with swollen fingers again.

In the last few weeks, since the weather has gradually got colder/less sunlight, a few fingers have started to get worse, they are much more swollen and it lasts all day, with redness and lumps on the back of those fingers, so I'm back to being restricted on what I can do with my hands.

I've gone to great lengths to stay warm and keep the blood flowing to my hands, I haven't had any blue/purple colour in my hands, nor any Raynauds whiteness yet - So I'm coming to the conclusion that sunlight has been helping my condition through May - October. Then I read about UVB phototherapy being used to treat Eczema, psoriasis, and various other skin conditions that are immune system related, and also found a study where UVA1 phototherapy was used to treat hardened skin patches in Scleroderma. It does seem that UV light is effective in reducing inflammation and regulating various skin/tissue cell activities.

Has anyone else found the same, or tried phototherapy with success, or tried any kind of home use UV lamp?

Thanks

[Midgebite21]

Hi, yes I’ve had 2 courses of UVA1 phototherapy for my scleroderma at Ninewells Hospital, Dundee. I saw marked improvement in my ability to open my mouth and general flexibility. I had to travel from Edinburgh to Dundee twice a week for nearly 3 months and I believe there are only 3 of these specific UVA1 beds in the U.K. presently. Royal Free London, Leeds and Dundee but there maybe more now as it was pre covid that I had my treatment. Definitely worth talking to your rheumatologist about a referral to a centre. Nothing ventured, nothing gained.

[Ciaran34]

i wear infrared gloves to bed at night, saunas and lots of baths help too when it gets cold