Hi there , please can I ask a question to fellow Lupies that you might think is stupid !
I know I must avoid the sun , wear a sun hat with factor 50 protection, sit in shade wear spf 50 sunscreen etc etc .
I never get the rash on my legs so is it ok to sit with my legs in the sun to get a little brown and cover the rest of me or will the rays go into my system and end up making my face red and causing widespread problems ?
Many thanks
It doesnt matter what skin is exposed to the sun it will trigger a rash in your "usual " place .for me I get a bad head and my joints flare so for me it triggers problems elsewhere in my system x
Ok thanks that's what I'm getting, thx for replying. So do you just not sit outside even under and umbrella totally covered etc , no holidays??? I'm so sad as it's yet more pleasures denied 🙅♀️
Weve had uk holidays with the dogs but I wear maxi dresses,linen trousers,thin cardigan,sunglasses,factor 50 hat and factor 50 cream all year.i bought a gazebo last year during lockdown 1 so I can be outside in the shade.my limit outside without protection is 30 mins then I suffer for 3 days with my joints and my eyes burn .if i sit outside it's usually in an evening for a limited time.i find the best way is to wander in and out rather then sitting for a long period of time.its a case of finding a different way of doing things that's all my lovely .you still can enjoy xx
Thank you , feeling very down about all this , last year during lockdown I spent all day every day in the garden with no issues, this has happened so quickly 😢
Wonder if that was your trigger ? I'm 7 years down the road and it does take adjustments and compromises but it is doable.my photosensitivty has got worse but some lupus meds cause photosensitivty too.pace yourself, sleep and eat well ,stick to your boundries and google the spoon theory .I find it's better to do a little bit if something then nothing at all.always here to chat if you need too. X
It's all happened since my vax to be honest 😞but thank you I really appreciate that !
If youve got a diagnosis of lupus already you are very very lucky as the average time for diagnosis is 6 years for me it took 5 years .youve most probably had it alot longer without realizing it x
Yes it could be , I think I have some crossover as I have APS too , I was seeing my dermatologist about what I thought was eczema and he did some skin biopsies on my face and backside ( no sun exposure) and a full auto screen , I was lucky as you say because he spotted something was weird and acted so quickly. X
Do you ever get hairloss and loss of appetite too after sun exposure?
Honestly cant say I've noticed any hair loss .possibly some lack of appetite but dont know if that's just because I feel so rubbish .I feel very fatigued with a headache and my joints mainly hands and feet go bananas. I then have to stay indoors until it eases ( usually the weather changes lol ) and it takes 2/3 days to settle xx
You now joined many of us with sun sensitivity....it a hard one to adjust to especially sun lovers & on lovely warm days we are getting at last....
We each have to figure our intolerances to uv & it is worth controlling it, to not only avoid rashes, but as spanishml suggested, avoiding getting flares or triggering other reactions.
50 factor plus uv clothes help...also watch out for uv through car windows etc. I wear cotton gloves or wooly ones in winter while driving, it was a long drive that triggered my initial rash & skin biopsy.
I tend to cover up to avoid reapplying sunblock....bit much in hot climates.
Sadly I have to garden when I can to avoid light...too tired to do it at the end of the day, hoping for some overcast early tomorrow! Sad eh 😎
Wishing you well & good time to source uv clothes for the summer.....
ml
Oh my goodness, yes it's so sad 😞, really do feel these wretched autoimmune diseases are snatching more and more of the good bits of us on a daily basis ! I'm not dealing with this bit so well , APS was bad enough but now I can't even sit in the garden 🪴!
Sorry , feeling sorry for myself, going to miss eating outside with family and friends!
Thanks for all the tips , especially re driving!
Stay well !
It is a huge adjustment & it will take time to adjust to it.... I suppose we are all still adjusting as we are ever changing...
What I did & i do now, is try the opposite thought process & test it - so I think I can sit in the garden (then I figure out when & how) so I get a comfy garden chair & move with the shade wearing appropriate 50 factor & a cool sun shirt with uv factor.... I even have an umbrella, but haven't tried it out yet... Also, to walk with the family (when I am up to it) go victorian & walk with an umbrella to protect me etc - mind you I live in a rural area...
Now when it's overcast I think can I work on the garden? etc. and then humour folks who say to me - what a nice sunny day, as I do enjoy seeing sun, cheery & all, I say yes...
Hard part is explaining it all to visitors etc. and saying no to going to beaches in the middle of the day etc. I tell them I am allergic to the 🌞 sun as a quick explanation.....
I hope you find your uv tolerances & find new ways to get outside... 😀ml
Hello 7⭐️,( it’s me!)
You may remember me asking a few questions about this lately.
It came on rather quickly in my case. ( pre vaccination.)
My rheumatologist told me that it can still do organ damage- so very important to wear sunscreen, and avoid the fabrics made of linen. (I live in Texas- lots of sun here and very hot- so I tend to wear natural fabrics that breathe well like linen.)
Umbrellas with UV treatment... and cover the exposed skin.
I’ve decided to LARP as a Victorian era Lady in mourning. Full high neck- umbrella... long full skirts - long sleeves... big hats... I’m thinking it’s the look I’m going for!
Hiya KellyinTexas, yes I do remember, was watching with interest! Yes, this really is the icing on the cake , i think I'm going to have a lot of problems trying to get control of all this because I can't keep up with how quickly it's progressing in the last couple of months !
I'm going to miss eating outside, barbecues with friends etc , so fed up with it all !
Yes , I've already ordered from Australia, hats , shirts , neck covering etc with factor 50 , might order the umbrella now ! Used to love dressing up , now I literally am and not in a good way !
Stay safe and well and blotch free !
I still eat outside- I just find the shade.
I’m finding it a bit rough to get overheated anyway at the moment- as I’m on Rituximab for refractory APS ( which you already know.)
Sadly my long standing neurologist died of Covid-19 in December. It’s been absolutely devastating to our community.
My rheumatologist was considering adding on IVIG to the mix as rituximab has not controlled the neurological symptoms as well as hoped. The APS vasculitis ( swelling of vessels due to non ANCA PANCA- but from APS antibodies attacking vessel membranes) is not quite under control either.
The titers are not remarkably down either. Hovering right at the lowest end of medium for aCL IgG.
I now have a new neurologist who agrees I will need ivig to supplement the rituximab. It should help give a little boost to a low immunoglobulin M. ( 39 where 50-300mg/dL is ref range.)
My dsDNA is at 10, and apparently if you’ve had a positive ANA this is a “low” lupus if you meet certain other markers, taken as a whole picture kind of thing. Some I meet- some I don’t.
I don’t really get caught up in the minutiae of it- because my rheumatologist doesn’t.
They know all the specifics... they also know how to evaluate with a broad overview.
I thought you had subacute cutaneous lupus. You would certainly want to stay out of the sun in a big way. But that is surprising your rheumatologist would mention organ damage in the context of SCLE.
Have you seen a dermatologist? Dermatologists are usually the ones who treat SCLE in the US.
No , this is all the diagnosis of my Dermatologist, he hasn't mentioned organ damage to me (not yet anyway ) fingers crossed ! Seeing my Rheumatologist mid June , hopefully they can tie it all up !
I can’t imagine why a dermatologist or rheumatologist would talk about organ damage to a SCLE patient. Of course, they would stress big time how essential it is to stay out of the sun. But what differentiates SCLE from SLE is organ involvement. The skin is already involved. When another system is involved like kidneys or lungs, it implies progression to systemic lupus.
Hope you are staying stable!
K
I do have a dermatologist, Kay.
I do have SCLE, that’s correct.
I was diagnosed, however by my rheumatologist. He said it’s very strongly associated with Sjögren’s syndrome.
He was also very clear that it does cause organ damage. Just avoid the sun- no problem!
You might want to get a second opinion. Maybe @Chanpreet_Walia can clarify.
There are many people on the forum with SCLE. Aside from progression to SLE, it would be important to know if current thinking is SCLE results in organ involvement.
Those of us with UCTD and photosensitivity are told to stay out of the sun. But we are still told organ damage is unlikely.
Avoiding the sun actually can be very hard. Many of us continue to get rashes and systemic flares even doing all we can to avoid the sun.
Thank you Kay.
I’ll stick with my specialists.
I have damaged organs already, and low lupus.
Well, that is different. If you have « low lupus » - that may be similar to undifferentiated connective tissue disease - then the concern is systemic flare.
It is important to be clear so that we don’t unnecessarily frighten people.
Just saw your reply after writing...texas is soooo warm, nice to think of your victorian look too....just funny here as little or no AC in many buildings so layering is a challenge...but so much easier than living in TX...
The issue isn’t where the rash is. It is the inflammatory reaction that occurs from the damage the UV rays do in a lupus patient.
It is not stupid at all. Many people don’t realize that the sun can create systemic reactions.
Please don’t take chances. Sun avoidance is the one thing in our control.
Take care.
K
I have found I can tolerate some sun but, if I get to much of it I will end up having a flare up.
Like you I am new to photosensitivity but luckily OH is a physicist and determined to find practical solutions. He bought a Kokaburra UV sail - cuts out 99% of UV- can be cut to any size and comes with rivets and rope to attach to posts / trees etc for outside in the garden. Perfect! I have it strung up between some apple trees and sit under it. I still wear my F50 and glasses with UVA and UVB protection - I'll also use my F50 umbrella - every little bit helps. I don't stay out for too long but at least I can sit out with as much protection as possible. Can't do other things in the garden, like potter around as I have learned that just my hat and suncream isn't enough and I'll feel poorly after 30 mins but at least this way I can sit and be outside for a little. Just a thought. x
Hi Sevenstar1. Also being new to Lupus I can only tell you who have experienced so far. I lather up on the factor 50 and where a brimmed hat when pottering in and out of the sun. I do not sit in the sun between 11am and 3pm. After that I have popped my legs in the sun but only for an hour just to test it out. Seems ok like that for me so far. Interestingly I have woken with a hives rash all over this morning. I'm not sure if it's connected to my meds or the fact that I went outside to a country park yesterday. It was overcast but just to be careful I had long sleeve top, trousers and hat on and sun cream. Strange. I have read in my Lupus Encylopaedia book that when you are travelling in a vehicle you get more if days with the windows down than up. So if you have a.c. drive with your windows up!Best of luck and keep me posted with any tips please.😀👍
Thank you so much, it's all a learning curve and not one I'm enjoying! But yes of course I will , take care!
I appreciate its learning curve you are finding hard to accept but once you try the adjustments and make the connection in your head that it helps you feel better then it becomes easier to do. Lightbulbs especially fluorescent lights and windows are also sources of uv. X
Funnily enough I met my daughter and grandchildren in a country park yesterday too for the first time since Aug.like you I was covered up and it was cloudy. This morning I ache and my hands are puffy. It may have been cloudy but on weather reports this week uv levels are very high at the moment.I also spent more time outside then usual as it was an 11 hr day 5 of them spent driving so a couple of sofa days are now required xxxx
Fyi predictive text made uv rays say if day! 🤣😘
Hi reading below maybe I’m a little more tolerant in the sun . I do go abroad to sunnier climes when we can BUT we are all different and I do slap on high factor sun cream . I also stay in the shade at peak times . A little bit of what’s good can be good but air caution we are all different! I was diagnosed 12 years ago I try to do everything we are recommended and I think it’s about finding your boundaries. Be happy x
That's good to know , if this stays this way it's a big part of my life on pause , trying to stay positive but it's going to take some practice! Thx for reply x
When I was diagnosed I was going to Mauritius the week after and yes I still went .... I’m not sure I realised just what lupus was ! Travel and experience are a big part of my life I’ve adjusted and I’m sure you will just do things in moderation! A good healthy diet and lifestyle will help immensely.
Oh gosh , how did you get on , were you ok , we went before the first lockdown and had the best time , a mere memory of how things were 😢
I was ok but this was when I was first diagnosed. Before I go on holiday I live a very clean life for a good while and I think it’s a balancing act and it seems to work for me good food and no alcohol . Then when I’m on holiday I do everything in moderation . You will get there and find your happy medium I’m sure. The thing that always seems to stay with me is loss of energy but again I’ve learnt to live with it . Don’t 4get I’m 12 years in and I’ve learnt over the years what I can tolerate I’m very sure sure you will too.
I rarely get a rash anymore if I get sun exposure but I do experience fatigue and joint pain. Most exposure for me is my feet. The rash is an external manifestation but it is not necessarily the issue. Systemic flairs or reactions cause the problem and that can occur with no rash. For those that have sun sensitivity it’s very important to minimize any sun exposure by using sunscreen and protection. It stinks for sure! I miss the old days but it’s just reality.
Hi there,
I am exactly where you are now... I was diagnosed this past October with Lupus STE. It came out of nowhere, and I use to be at the lake, cookouts and gardening all summer every year. My photosensitivity didn't really start until this past May when I found out the hard way that I have to be cautious. ( I push the envelope with this disorder lol) I get a nasty flare if I'm outside for 20 mins, especially without sunblock. I get bad headaches, burning eyes and major hairloss along with loss of appetite and energy.
I live in the US in Oklahoma. We get up to 100 degrees here and the lake and swimming are a common enjoyment past time in the summer here. I HATE staying inside...
I came to terms what I can and can't do with this disorder, but the sun was my number one enjoyment that has been the hardest on me and I'm sure for most women and men. So I know exactly how you feel...
I hope one day they can have a medication that could allow people to enjoy outside and eat what they want to with out any flares, or better yet a cure. {{{Hugs}}}
I literally feel your pain , being the sun was one of life's real pleasures, I hate being inside as well and now having to turn down invitations in case there isn't enough shade !
Re hair loss, I'm not sure , mine has definitely got a lot thinner so it's entirely possible! Stay safe , hugs back x
Fellow Okie too. The sun is definitely my enemy. A sunburn on my legs is what gave me a horrible flare that caused a major pleural effusion. That was seven years ago. My legs have not seen the sun since then. Anytime I’m going outside I wear SPF clothing and hat. I have a long sleeves, long pants, high neck swimsuit that allows me to participate it water activities.
Well hello my fellow Okie! It's like we all have to relearn how to be outside and adjust. I can get my legs and arms in the sun, but that is it. If I get my face, chest or the trunk of my body in the sun, I have a bad flare starting with aura migraines, inside nose sores if that sun hits my face without sunblock. My skin is dark already as my father is Comanche, but it still doesn't matter to Lupus. {{{Hugs}}}
My Rheumy told me to stay out of the sun, to use clothing sold on line that blocks out the sun. I got a hat that is cute and blocks. you can also get a product called Sun Guard to soak your clothing in. It takes the garment from USG 5 to 30. sunguardsunprotection.com
Your comments helpful . . .Over the last 14 yrs with lupus/connective tissue disease , in the summers I have suffered different reactions from sun. However a huge flare that resulted eventually in diagnosis came after an early spring day , hot sun, walking along wading in the incoming tide in Hunstanton. Bliss apart from major butterfly rash that stayed firmly in place for the best part of the year , mouth full of lesions , etc etc. Since then always choosing shade for sitting out , walks in as much share as poss. etc.
Of course , Sun block , hat , etc. Glad to like in UK . . .cloudy! Best wishes for this summer. Hope you enjoy it.
Hello everybody! I was diagnosed by a dermatologist 3 years ago after a thick round rash appeared on my chin. I had been having skin issues over the year and was treated for rosacea, adult acne, and allergies. In the end, I went to a private dermatologist who took one look and said lupus STE! Which was confirmed by a biopsy. My heart dropped to the floor!I too used to love the sun but now have adjusted (quite badly and with a lot of self-pity) I do have to regulate time in the sun - difficult when you are working, shopping - basically living life in a sunny climate. I wear factor 50 et. Today I am staying home after a difficult week of having to be outside for certain obligations. My rash has flared, I`m exhausted and my joints painful. OOOPS forgot to mention I live in Barcelona!
Hope you find a balance - I am adjusting still but now listen to my body and becoming more aware of when and what I need to do to look after myself more.
Take care to all.
Luckily we are having rather a few cloudy days this spring. Hot and high UV but at least not a blaring sun every day.
Hi Nelly , oh yes that is one of the areas I have it too , not the classic Malar but chin throat , neck shoulders and around the sides of the face but not across it , thick red round patches that flare after exposure!
I struggle with products too as have eczema and a whole bunch of allergies especially to METHYLISOTHIAZOLINONE ( MI) which is in most make up and sun creams (body shop is good tho ) !
Just another day another rash ! Never thought I'd wish for cloudy days , ever !
No matter how much I try to explain to friends etc that I need to stay out of the sun , they don't really get the implications!
Stay shady and well !
Hello again! I feel you...people just don`t get it! I have 3 daughters who are constantly invited to pool parties etc. Mums invited along to enjoy the sun and have some drinks (mostly alcohol) which is another no-no!! I used to go along but would end up suffering days after albeit having been in the shade etc. I felt so out of it that now I just say I`m busy. It hurts that I can`t enjoy these get-togethers with the rest of the mums and I am certainly missing out on the conversations and activities that they plan. I keep involved by going for a quick coffee now and then. My daughters are very understanding but sometimes I feel they are missing out too. On top of your lupus, you are allergic to cosmetics and creams !!!! Hope you find something that can alleviate your rashes etc. I had a great dermatologist..she has just left and I am waiting to see the replacement... fingers are crossed that he/she is just as nice.
Take care all you fellow Lupis!!
Nice to read all the other comments about folks sun sensitivity, helps me too to remember we are not alone...
I would say with SCLE, other overlapping diseases can occur, like the one you already have and mine, to start with, was sjogrens & all that does to your body, they often go hand in hand. It was another specialist who said I have sjogrens with SCLE not the other way around....found that interesting & that our skin is a major organ to be kind too & take care of...such a learning curve....
It took me a while to realise that diseases can overlap & progress & be triggered by the UV light.
Hug to all ml
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Photosensitive rash? 
Just a rash or malar rash
