Does anyone suffer from UV light related urticaria?

I was diagnosed with Lupus in September, but even 3 years before that, I had dreadful urticaria which seems to be triggered by UV light from the sun and from strip lighting. That is one of the main symptoms that I went to the doctor with. I've recently become exposed to UV strip lighting through my daily routine and where I have to go, and have noticed that I'm flaring again. I haven't had a flare since the summer. Today has been a terrible day for it! I have read that low Complement 4 levels are to blame, of which I have. Although I am now on Methotrexate which have helped push them up to the slightly more normal range! I just wondered if it was something which other Lupus sufferers have had to put up with?

Thanks in advance for any info!

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  • Hi there

    Yes, I always get a rash on my arms if they are exposed to the sun. My daughter does too and has been one of the defining symptoms her paediatrician has been interested in regarding investigating autoimmune problems further.

    I have a leaflet from Lupus UK called "The Diagnosis to Lupus" and photosensitivity is number three in their list of symptoms specific to lupus.

    In the summer I try to stay out of the sun as much as possible, as I am very fair skinned anyway, but the flip side of that is that I now have extremely low levels of Vitamin D which can cause problems. This showed up on some recent blood tests and my GP therefore prescribed me some Vitamin D3 capsules. These, I believe are supposed to better than Vitamin D2 as they have a longer lasting effect (I think). I understand that they take a while to take effect but I have read that it is important to take a supplement if you cannot go in the sun.

    Hope this helps

    x

  • Hi Heidieidi

    I agree whole heartedly with your concerns regarding lights as I have been reminded by my body that yes, I am very UV sensitive! Over the years with various treatments, the sensitivity had been reduced until I started a new job in an office with old strip lights. This caused quite a shocking reaction in the form of a rash. Looking back it also explained some of the brain fog I was experiencing at the time.

    My employers eventually provided filter covers for the bulbs and windows and that has helped tremendously. Sourced from a company that specializes in lighting filters for reduction of UV encapsulite.co.uk

    I still wear some degree of sunblock at all times, strength depending on the time of the year.

    Fruitloop x

  • I work in a warehouse with over 20,000 high intensity strip lights that emit only small amounts of UV and yet it became apparent within the first few days that if I was to continue working there I would need some protection. I now use Uvistat 50+ as prescribed and my Derm suggested purchasing some appropriate shirts from rohan.co.uk perhaps slightly pricey but given that I can now work without bursting into a horrendous rash it is IMO worth it.

    If you can't get Uvistat on prescription try to find a sun screen with a Titanium Dioxide content (3% to 6% is good)

    As mentioned above I am also Vit D deficient and am prescribed Adcal-D3 (my bones are rubbish aswell)

    On a slight sidenote, watch out for CFL's (standard low energy bulbs). Philips have come up with a new series of LED light that emits no UV or IR light but I think they are about £30 per bulb.

  • Hi ... when the energy man came to change my out of date electric meter he said you can get these bulbs on prescription if you are UV sensitive. Haven't looked into it myself.

    Fruitloop x

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