I've got a Rheumatology appointment tomorrow and a Dermatology appointment next week. My brand of photosensitivity is a major question.
Do any of you experience this?
1) Bright red burn of any exposed skin in 10 mins or less, which then stings like a 'real sunburn' for about an hour before both disappear completely.
2) Burning sensation on skin through clothing, including SPF50 clothing and some driving gloves.
3) Scorching, as if by a magnifying glass, through windows on bare skin and through clothing. It happens even when I put a wool blanket over my jeans(!). The sunlight still burns through creating an uncomfortable feeling, less severe than the scorching one, but one that means I have to move from any rays of sun inside or out.
I have all the precautionary stuff and I know about UV filters for windows/cars, but my UV gloves don't work fully when the light comes through windows, so just wondering if anyone else experiences this where some UV blocks don't work? If so, what tests did you have? Light testing for different rays beyond UVA/B like infrared, blue light..? Are you taking any treatment that works?
I've got a baby pram umbrella (UVA/B blocker) that does work inside/outside, but I was hoping once we got in control of the UCTD with meds (lots of symptoms gone now after 1+ years of meds) that the sun sensitivity would go too. But no such luck... It seems worse this year. So I'm wondering that it's not caused by CTD but something else entirely. I'm already medicated for Mast Cell Activation Disorder and though that's working for the rashes and urticaria, it's not touching this either.
Anyone? Feeling a bit desperate for ideas since my Rheumy has done all she can, but my Dermy might be able to do more if I have a direction. I really, really don't want to resort to having to make my own astronaut suits from old baby prams... : )