Hello, new member diagnosed with Discoid lupus this year. Does anyone know where I can buy UV protective clothes which wont break the bank

I'm still coming to terms over this diagnoses, so hard when we are walking into summer :( . I have brought two wide brimmed hats, but it is very hard to find clothes in the normal stores which will protect me from the sun..... I wear factor 50+ sun cream, although I'm not that good at remembering to apply for be I go out for the day. The last couple of days at work I have worn sandles, but I have now noticed I have a couple of new spots which have appeared on my feet and toes, so I will have to start the steroid cream which means I will have to cover up more or stay indoors ,which is not always possible in my line of work. I also have other symptoms which worry me. Headaches which affects my eye sight and make me feel quite ill, twice this has happened in 6 weeks. I have taken my blood pressure when this happens but my BP is normal! Temperature/fever, this happens quite often even on chilly days. My eyes can be very dry even on days when I have drank loads of fluids. Joint ache is becoming more of a problem, I used to get a condition called viral arthritis maybe once or twice a year if I was unlucky (for the past 15 years), now I find my joint ; wrists, fingers, ankles, feet, shoulders, knees and sometimes my neck are always aching. Last night the skin on the palm of my hands felt as if it was burning, I have noticed my head and my face strings if I have been in places where they have fluorescent light. I am tired more but then I get up for work earlier as I have to catch a train, after a couple of days of this I find by 6 pm I am ready for bed. Any advice is gratefully received... Thank you Julie

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7 Replies

  • there is a website if you google you may be able to find it...also seem to remember seeing in the Lupus UK magazine...try the Spectrum group that campaign around light bulbs and those affected by sunlight/florescent light..there is also an umbrella that blocks UV rays...good luck

  • I have subacute cutaneous Lupus which affects my skin. It's very difficult to buy UV protective clothing as I've discovered. I do manage to get by with wearing a couple of thin layers of clothing. If I wear a cardigan, I will smother my arms in sun cream underneath. The same with wearing sandals. I've got a few good sunhats that are UV protective, which I bought online from village hats. I do have some UV protective clothing from Uniglo and they are quite inexpensive. I got them online as well. I can't tolerate bright lights either, I find sunglasses easy to wear. Hope this helps.

  • Hi Julie,

    The main UK supplier of UV protective clothing is Sunsibility. Details can be found at lupusuk.org.uk/latest-news/... - However, they're clothing is expensive. I'm not sure of any cheaper suppliers myself.

    I have heard of washing powders that you can buy which make your existing clothes more UV protective and are a much more cost effective solution, but I'm afraid I haven't heard any feedback on how effective they are and I can't recommend a supplier of one.

  • Rohan sell sun protective clothing, unfortunately the cheapest t-shirt is £30, but they do have regular sales.

  • Hi

    I too have sub-acute cutaneous lupus, diagnosed last November. Craghoppers do a range of shirts under the name of 'Solarshield', which they claim to be UV protective. They are not too expensive and can be bought either on-line or through good outdoor shops, such as Go Outdoors. They are light weight and comfortable to wear and so far so good ..... Will need to wait until the height of summer to really put them to the test. I hope you find something suitable.

  • Hello juliekendell. Sorry to hear you have been so unwell. This site is a great help and support to me, so I hope it will be for you too. I was diagnosed in November with Sub-Acute Cutaneous Lupus (a sub group of Discoid Lupus, I think). Mine sores/lesions from last summer, before I was diagnosed, have scarred and I have scarring to my scalp, where my hair wont grow back. I have lots of SLE symptoms but luckily, so far, no internal organ involvement. I am quite new to all of this and this will be my first summer knowing that I have lupus and must take very good care of myself in the sun. loulou2209 asked a similar questions about sunscreen and hats about a month ago and there were quite a few helpful replies. I get Ego Sun Sense 50+ sun cream prescribed by my GP and I have also started using their tinted one from Amazon for my face (it has a matt finish and looks better than the white one, which makes me looks like even more of a ghost than usual!). I think everyone's sun sensitivity is different, some are much more sensitive than others. It is going to take me a while, through trial and error to find out what I can and can't do and what work for me. I have purchased a few hats already and am always wearing long sleeves and trousers when outdoors. My face always has the 50+ cream now, even through the winter. I am not wearing sandals but covering my feet too. I picked up from on here, that if the sun shines through a piece of clothing when held up to the light, then it is not thick enough to protect you. I haven't purchased any clothing yet but will see how it goes. Someone also recommended Village Hatd on line for a good selection. I wish you well.

  • I was diagnosed with DLE in 2011. At that time I had a lesion on my nose which was quickly removed (before my Lupus diagnosis) as my consultant was worried it was a bezel cell thingy. I was told to take hydroxychloriquine alll through the summer. To use at least factor 40 on my face, but that P20 on my body was fine and to wear a hat in the sun. I've followed that advice. I wear Clarins factor 40 tinted sunscreen and then used their BB cream on top which has an additional factor 20. I wear a hat as often as possible, but often feel conspicuous and often get caught at work having to go out at lunchtime without a hat...... I've holidayed in the Caribbean every year since, with as many visits to Crete where my sister lives. I still sunbathe, using P20 on my body, with my head always in the shade. I did have a Lupus flare earlier this year with a spot on my face which went down thanks to Plaquenil eventually. I do not know what caused it - as it wasn't sunlight. I think it was stress. I also suffer from bleeding gums, even though I floss every day and I get a lot of aches and pains. I found the Quinoric dreadful but Plaquenil is great. I've bought two new hats today in M&S :-)

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