If any of you are very sun sensitive and struggle with clothing in the Spring/Summer, I have just received my two plain white rash vests from Lands End and am really really pleased!
I struggle with sun cream and reapplying etc, with children to look after it's something easily forgotten, so tend to cover my arms and legs with clothing. I generally wear jeans or wide legged trousers on my bottom half and rarely sandals - mostly in the evenings when the sun has gone down.
Top half I layer tops & light weight cardigans or wear rash vests with Factor 50+ protection. The Boden ones are brightly coloured and pretty and great for holidays and days at the beach. (But expensive, so I look out for sales when going on holiday). But I have struggled to find plain rash vest - with no Billabong or Animal logo etc. I'm definitely not a surfing chick, ha ha.
Found plain white and plain navy on Lands End ladies clothing on line last week. They are long sleeved too - a must for me.
I thought I could wear these under normal ladies summer tops or t-shirts, which will make a lovely change for me.
Hope that helps someone.
Wendy
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Wendy39
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Ha ha. That would be a sight - me on a surf board. We live in a seaside resort with lots of surf wear shops etc. Locals wear shorts and flip flops most of the year. Rash vests are in lots of those shops and online Amazon etc.
No they aren't really hot to wear. They are designed to be worn on the beach or the poolside. Most are SPF 50+. I always make my 3 children wear them abroad by the pool or on the beach for fear of them burning and always have done. Kids don't like standing still to have greasy sun cream rubbed or sprayed on them, so these were a great solution. Plus don't have to worry about reapplying or washing off when they swim. So when I got diagnosed with SCLE I started wearing them myself for walks or days on the beach etc.
That's fantastic, thank you!! I've struggled with sticky suntan lotion for so long, I can't wait to try these on!.
What sun cream are you using? I've come across Altruist from Amazon - it's kind to skin and has no residue and good UVA and UVB protection. It's only SPF 30 but it's sufficient - my rheumy says there's no visible benefit between SPF 50 or 30. I used to use Boots' own but I swapped to this last year and now I don't leave house without it. I wish they'd do a handbag size...
Thank you very much for the detail on rash vests, invaluable!
I didn't know they came in pretty patterns and are something I haven't explored before. Thanks for the info. Definitely something worth exploring and investing in (ha ha, excuse the pun!).
By the way, these tend to be tight fitting. I always order a larger size. I'm a size 14-16. So in the Lands End one I ordered 16-18 and they aren't too tight or too loose. Just right to be comfortable. Otherwise I opt for XL.
Ohh white rash vests, been wearing cotton t-shirts under my shirts to ensure no UV penetration, can't wait to look, thanks for the tip.... hope you are well...one more day of work...then a break....yah. ML
Hi! This is going to be my first summer with SCLE and I'm still a bit confused and trying out things. We've had so far a couple of sunny weekends so we'll see how I get on. My first and only sun reaction (which was not confirmed by biopsy) happened 3-4 after possible sun exposure so I am still waiting to see how I fared from these last sunny days. My doctor said i didn't need to go crazy but to just be sensible. So far i've tried limiting the time with direct sun although I've not always managed to avoid the midday sun. If i know i will be out in the sun for long and esp if i wear a lighter lose tshirt (3/4 lengh sleeves) i put sunsense under the top as well as on arms. For the face/neck i have started using La Roche Posay Anthelios XL recommended by my dermatologist as it's a much nicer cream. Less white, less thick. Very light. I've also invested in a hat and a cap and i wear this if I stay out for a long time. I have bought myself a Roxy rash vest haha and will attemot the surfer look if i ever dare going to the beach this summer. I guess I'm lucky as I'm a smaller size but I'm hardly the surfer 😂 Will try the afternoon sun if i do go to the beach. I am not keen on long surfer tight trousers though at this stage. Doc says it should be ok as long as i apply cream properly.
I did not know Boden did UPF tops so will check them out! Never hear of Lands End but will check those too! Thanks. I really struggle with sun protection clothing. So unfashionable!
How long do your sun reactions take to appear? I think it was 4 wks for me as rash was on my chest/breasts and only exposure to this area would've been when i was on the beacha couple of days 4 wks before. I first had a normal ezcema reaction (had these in past). I used Elocon and then a week later i got a rash with small annular marks that i first thought was hives until i realised they were not going away. I am not sure if this was def sun related or heat related or even stress related because of this!
Hello!!!!! So lovely to hear from you. I have SCLE and was diagnosed in October 2013. There aren't many of us on here. Maggielee has SCLE and someone else I need to get my thinking cap name has escaped me! Sorry. I have guests at the mo. My 3 children and 2 extra plus their mum. I really want to reply to you in detail and have a good chat but need to get breakfast cleared and get dressed. I'm going to be very lazy and post a link to one of my recent replies to a post about holidays/sun protection etc. Please stay in touch.
I shouldn't say I'm excited that we are all meeting this way - as none of us would wish this on anyone. But hello. Great to meet you! How long have you been diagnosed?
I was diagnosed with Sjögren's syndrome about 20 years ago and then, after years and years of strange rashes, I had a horrendous flare in the summer of 2015, triggered by an allergic reaction. I'm now extremely sun sensitive. Local GPS weren't very sympathetic but great treatment at Edinburgh dematology dept. The diagnosis made a lot of sense of things that had been happening to me for many years and this site let's me know there's more of us out there.
Hello Barbara17. I have just replied to Thereisalight in more detail below. Welcome and I am so glad to hear you have great Dermy care. You are definitely not alone! Please stay in touch. x
Ventured out this morning in my usual layers but left my neck bare(no scarf!) and used some of the Altruist sun cream. It was very sunny this morning but chilly. I am delighted to say I am not all sticky and I've even dared to wear a silver necklace. But best of all no red itchy lumps!! Fingers crossed!
Hello again. My guests have gone and I am having a restful day.
When were you diagnosed Thereisalight?
My husband worked out that I had a form of lupus in October 2013 and luckily for me the GP I saw had specialised in Dermatology and she agreed, no argument or ego dented scenario. She told me that I definitely has skin involvement and she would telephone me when the blood tests came back. She did and she told me that I had SLE because I had antibodies show up in my blood tests.
I had a positive ANA, ENA & Anti-RO, which apparently leads to a SCLE diagnosis. (My Anti - DS-DNA was of a very low titre, 3.8 I think, so not considered a positive). But I did spend a lot of time reading and learning about lupus. I joined Lupus UK and this support group, which has been amazing.
I have always been confused by my diagnosis as I did meet the criteria for SLE, plus GPs and doctors write different things on their letters and notes. Some put DLE, some SLE and some SCLE. It's very confusing for us, if they aren't sure! I remember the doctors telling me that I would only have problems in the summer and I would be able to take hydroxychloroquine during the summer months only. Well unfortunately this hasn't been the case at all. I suffer symptoms and flares all year around.
Last January I had a biopsy on a long standing rash at the nape of my neck (I'd had it about 8 years at that point) which showed active lupus disease and my diagnosis was amended by my then Consultant Dermy, to SCLE with systemic features.
I am actually going to see a new Consultant Rheumatologist, lupus specialist, next Friday, as I have not been happy with my care locally for sometime and have even taken the issues to my MP, but it got me no where.
I get batted backwards and forwards between Rheumy and Dermy. Neither of them understand me or my condition and neither of them wants to take the lead. The Health Board has told me quite categorically that I am a Dermy patient and that the Dermy is the lead clinician in my case. There is no Consultant Dermy at my hospital currently, so I am under the care of a GP with a specialist interest in skin. He doesn't seem to understand it either.
I don't have just skin issues, although there are lots of them. I suffer from extreme chronic fatigue, various types of headaches and migraine with myalgia, IBS type symptoms especially diarrhoea, tendonitis in my wrists, bursitis in my hip, depression and anxiety, lupus brain fog (memory issues, confusion, lack of concentration, short temper), hair loss and hair thinning with scarring alopecia, etc etc.
As for my skin, I have the rash at the nape of my neck, the malar rash, at the time of my diagnosis I had sores in my nose, in my ears, crusty skin behind my ears, rashes on my arms and back, dry cracked skin on my toes, weepy, crusty sores on my head, sore hands etc.
My malar rash comes up as soon as I expose myself to the sun and it looks like I have had one too many glasses of wine. So the sun on my face starts an instant reaction. The fatigue and headaches etc will start within a few hours.
I have got it wrong. It's a steep learning curve. I didn't protect my hands once and went shopping. Only 2.5 hours in and out of shops. It was an April day, hotter and sunnier than I realised. I burnt my hands. They blistered and cracked. They then got infected and became infected and swollen. It took 8 weeks for them to heal. Every time I used them and washed them I went back to square one. A big mistake to make!
I now know to take a lot of care in the sun but I still have a life to lead with 3 children. I want to try to be normal for their sake and we live by the coast, so they are used to walking the coastal path and going to the beach on a nice day. So I cover up. Jeans or dark coloured wide trousers, rash vests or a few thin layers, hats - either a bobble hat or a sun floopy hat, trainers or boots (sandals in the evening when the sun has gone down etc. So only my hands and my face are exposed. Oh I also wear big sunglasses. So there isn't much of me exposed to the sun. I use the Ego Sun Sense Factor 50+ prescribed by the dermy originally and now on my repeat with the GP. I buy the tinted facial version on amazon for day time use.
If we are going to the beach I use a factor 50+ hand held parasol or when the children were little a little beach tent with factor 50 protection, so I could sit imside in the shade.
So we all find our own ways of coping. Some are more sensitive then others. But with SCLE we do have to be very careful. Plus I am now on MMF which increases our risk of skin cancer.
The Lupus UK website has some great information on skin protection and photo sensitivity.
Please stay in touch and ask any questions. I remember only too well how daunting this diagnosis is and how scary it can be. You are not alone. We have a great support network here and we all want to help and share our experiences.
Hi Wendy. I was only diagnosed Nov/Dec last year 2016 so it's all new to me. So far I have been able to live a fairly normal life but i've not experienced summer yet or have travelled to meet my parents in spain in the summer so we'll see! My issues started after a trip to Spain in October!
I have the same diagnosis 1:600 ANA and positive ENA witn anti-Ro. My lack of major symptoms lead to my clinician say that it's UCTD and maybe SCLE and that i've got a good prognosis although we have to wait for 2-5 years to see how disease progresses. He reckons disease tends to show up during this time and this will show you what you are likely to get/suffer from. I'm lucky as i understand my dermo is a lupus specialist in Leeds and works alongside the rheumy team. Unless i show more complex signs i'll be under his care.
Regarding your diagnosis I read that there are 3 types of cutaneous lupus: discoid or chronic curaneous lupus (scarring rashes- no sulystemic disease), acute cutaneous lupus ACLE (typical butterfly rash and 50%of sufferers at least have SLE ie the ACLE is a sign of the lupus itself altho it does not all need to involve major organ involvement). And finally SCLE (rashes -often sparing the face with some mild lupus like symptoms altho 15% cases might also have SLE often with less or no organ involvenent).
Now I'm obviously no doctor and hope you dont take this wrong but from what you tell me you sound like you are more likely to have ACLE rather than SCLE and most likely SLE too but without organ involvement. It seems you really need to find yourself a proper lupus specialist. Hope the new rheumy you are going to see sorts you out! From what i read lupus is better treated by those who really know the disease. I would not waste any time with the GP other than to get prescriptions. Not all specialists are good either. The dermo that tested me for lupus told me i knew more about it than him after he first told me i def def did not have lupus! I'd say it's worth to travel further just to be looked after by the right team. Good luck!
However you are really an inspiration to me as i have no idea how you manage to cope with being so photosensitive and how you do everything you can to still get out and do things with the kids! I guess you dont have much of a choice but it would be so easy to be depressed and lock yourself at home etc i hope that if i become more photosensitive I am able to cope like you. I come from an anxious family (dad has been medicated for years) and i am naturally a worrier but since the random symptoms started i became very anxious. My health anxiety is quite serious! Haha I'm now reasonably upbeat as i feel i can still lead a semi normal life and be in the sun a bit whilst still having control of the disease. If that changes i might become wreck!
Let us know how you get on at the rheumy and we'll be in touch. Happy easter! X
Well, I haven't even finished breakfast yet but have ordered altruist sun cream and a rash vest!!! The joys of the internet. But if they work life will be so much better this summer. Sunsense makes such a mess of clothing and I'm frightened to wear jewellery as it ruins that too. I will keep everyone posted. Thanks, Wendy!
Hi Wendy and Barbara. Thank you for your replies! Glad to know some fellow sufferers! Yes, do keep in touch. Same here, not great that we met this way but it's nice to know we are not alone! Wendy, yes please reply when convenient. I know playdates are hard work! Here's my story if you missed my initial post on main page.
I basically have suspected SCLE but the diagnosis is UCTD so far as no major symptoms yet. No meds yet. I used to get prickly heat rash a few years back but very occasionally and after a long time in midday sun without cream (unplanned sunny uk lunch hour) but never had many issues so this came as a shock!
Not sure if you have heard of sunguard too? It's a wash in powder that adds uv protection to your own clothes - the cheapest place I've found at the one that is here sewessential.co.uk/rit-sun-... - I've just ordered 5 more boxes which if I plan my washing carefully should cover me for the summer and then because in my case I have problems all year round I will then get another 5 to wash in for the winter.
Also not sure if they still do it but Uniqlo used to sell uv protection stuff such as cardigans and sweat jacket type things for much less than anywhere else I've ever seen. I have a few of the cotton sweat jackets and throw them on over everything.
The other bit of advice I would say is to get dark colours rather than white if you can - the white will reflect the sun rather than absorb it and this may reflect back on to other parts of your skin and spark a reaction.
Good advice, an ordinary white t-shirt gives SPF 5 only. I read somewhere, a simple test is hold your clothing up to a window and if the light shines through it won't protect you - it's that simple.
I ordered some of the sun guard from Amazon but it was out of stock and after waiting for weeks they withdrew my order. Do you think it actually works? I was a little sceptical? To be honest with a rash vest or my layers, I'm usually well covered but the sun guard might be an added peace of mind.
It's difficult for me to tell due to the level of my reaction but I think it does - I'm not scle but my sle is highly photosensitive to all visible light and I seperately have solar urticaria, again to all visible light, so I have to wear Dundee cream all over all year, inside and out and under clothing. I was already using the wash in anyway but it was recommended to me by Guys photosensitive unit so im guessing they've seen it help other people. In my case I can't rely on it on its own but I can't rely on the uv clothing in isolation either.
Some of the specialist uv clothing is not only expensive but not exactly my taste either so it's nice to be able to wash it into my jeans for example and have that added reassurance that it's there as a backup in addition to my creams. I ended up on uniqlo last night too - they've got some plain uv tops at the moment for £15 each which is pretty good. I've ordered 2 to be here tomorrow so will let you know if they are any good. If you go on their website and search uv it will come up with a few items - they've still got hoodies in various colours which are about £20. They are very lightweight and really comfy and they pretty much go with anything so they are a great addition and a lot cheaper than anywhere else I've seen. They're great for warm clothing in the winter as well and I have a lot of their extra warm heattech tops which help keep me warm with the raynauds.
And yep if you can see through the fabric it isn't dense enough. Everything I buy gets held up to see if the weave is tight enough and it gets rejected if not. My reaction is through material as dense as jeans so anything that's too lightweight doesn't stand a chance.
Thank you Mifford for your tips. Will def check uniqlo! Yes i had come across sunguard and it's on my amazon bag at the moment. I was decidibg whether it was worth buying!
Another query I have is whether you or any of the fellow sufferers who are highly photosensitive have always been like this. I mean since diagnosis, has the photosensitivity gotten worse? I currently seem to be able to be in the sun as long as i'm protected and as long as i don't overdo it. Do you think it can get worse with time?
I think my medication has made me more photo sensitive and so I am not sure whether I would have got more sensitive anyway, without the meds. But for me, the meds are definitely the lesser of the two evils. (I'm on 2 x 200mg of hydroxy a day and 3g of MMF a day).
I think the solar urticaria I've had since I was about 10 as always used to come out in rashes in the sun. It got a lot more obvious and worse when my thyroid was finally diagnosed and treated - in my head it makes sense that my reactions probably sped up. I think the photosensitivity has always been there with the lupus as well but it's got worse the last few years but it could be I'm just more aware of it since I was diagnosed or it could be that the whole disease progression has made it more obvious. Funnily enough I've got worse since I have been treated for the solar urticaria - the creams I have fully blocking everything mean that I've lost my own little bit of immunity. Again it could be that I now notice it more as I have periods when I don't feel so bad and I am so much more protected from it now we are aware of its extent so it kind of makes the reactions feel worse when I do get them if that makes sense - it's amazing what you get used to until someone shows you that it isn't normal. At the same time it could be that it was getting worse anyway - I keep reminding myself that there's a reason that I finally got tested and kept pushing for it to be looked into more.
So after connecting with all of you lovely SCLE sufferers, my diagnosis has been amended to SLE. But I still have photo sensitivity and the Consultant at London Bridge told me I always need to wear a hat! So long sleeved sun protection tops, jeans, shoes and sunglasses are not enough! I told him only my hands and face are exposed. But hat it is! On the look out for various different styles now that will be good for summer. Please all stay in touch. X
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Sun-sensitive rashes 
Sun Protective Clothing
Hey, does anyone have any advice /experience re creams/meds to help with lupus sun rash :-(
Raynaurds and the summer 
UV Light and filter film
