Hi, I've had lots of things go wrong over time, but this is new.
I was doing a little gardening, and I mean a little, on Saturday, I felt my feet tingling in the sunshine but didn't think anything of it.
I thought i had prickly heat so sat with my feet in a bucket of icy water put some sudocrem on them took an antihistamine and went to bed. Didn't sleep because it feels like I jumped into nettles and then 5 mins later went back for another dose of nettle fun. Tuesday I went to pharmacist who gave me steroid cream and said keep taking the antihistamine and keep out of the sun.
Today I hung the washing out on the line and my arm started tingling, the rash is just starting to come up.
Is this it now never seeing the sunshine again ? I feel really upset by this new attack on me. I've been allergic to high spf sunscreen in the past so historically I either don't bother or only use a 30spf if I was going to be actually sunbathing. I love feeling warm all over!
I don't want this to be real or forever, I'm hoping people get over it and can sunbathe with impunity. Let me know how you got on please.
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Lulamay7
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Hi. Sunbathing is a distant memory for me and not a tan line to be seen.28 degs here up north and I'm wearing socks,leggings,long sleeved top ,hat,sunglasses and factor 50 sun cream .without it all 30 mins outside is my max.unfortunately with Lupus and Hydroxy can come photosensitivity. ...its all part n parcel I'm afraid. Took me a while to make the connection and accept it but now I've realised its not worth 3 days indoors stiff with sore hands and feet and a migraine X
Hi, I am really sorry this is happening to you. I like you love the feeling of warmth on my skin but haven’t been able to sunbathe or spend any length of time in the sun for the last 20 years. I get a rash like you but also feel very nauseous, achy and will often get a migraine. I miss it even now but it is now just a fact of my life and Lupus.
I also struggle with high factor suncreams but Piz Buin Allergy 50 works for me.
Hi Lulamay7, this sounds very familiar. I come out in a rash now within minutes in the sun. I've been prescribed spf50 ava5* by my rheumatologist and told to keep covered up. The heat is a killer for my joints too - swollen and stiff. Having a nightmare with shoes as I know my feet swell so much in the sun and heat. Haven't really found anything that helps other than staying out of the sun. Sorry I can't offer any helpful advice.
Can I ask what suncream you’re using as I’m struggling to get Sunsense 50 anywhere? Was told by pharmacy that doctors no longer able to prescribe suncream so any advice most welcome.
My rheumatologist has prescribed sunsense but I haven't take that to the pharmacy yet but I was told exactly the same as you by the pharmacist at my GP and she prescribed uvistat SPF50 instead. I picked it up this week but notice it only has a UVA 3* and my rheumatologist said I needed to use at least a UVA 4* so not sure whether I'm better off buying a Nivea SPF 50 as that has 4*s.
From another Lupus sufferer who has had problems with exposure to sun for the last 30 years, I'm sorry to say 'Yes, you must either be very careful to protect your skin when you're in the sun or avoid it'. My rheumatologist told me years ago that if you have SLE and a reaction to the sun then that inflammation will quickly travel around your body (systemic! 🤷🏼♀️) and cause you aches and pains all over and damage to your organs and connective tissue. So, as the other writers have said it really is something that it's better to avoid.
Most people think it’s just the skin that’s affected!
Sadly with lupus as you say it’s the whole body that’s affected and with a powerful immunosuppressant drug like Mycophenolate Mofetil, MMF the body’s defence against highly penetrating uv light is much reduced making you vulnerable to skin cancer!
Sunlight is a mixture of different wavelengths and it’s the
INFRA red radiation that makes us hot/warm, the uv being shorter is more penetrating!
I think sunbathing is a big fat no with lupus - sorry. And you should definitely be using sunscreen on exposed parts - even feet (mine suffer horribly in the sunshine). Doesn't mean you can't go outside though. There are specialist clothing companies which sell protective clothing and I have read the best everyday fabrics for protecting from the sun are wool and silk(!). The danger in letting yourself flare is that the lupus can go to other parts of you, like your vital organs, if it hasn't already. Not worth risking it.
I swim outdoors all year round. I always wear a hat - a woolly hat, a brimmed hat or a swim hat - doesn't do much for one's (ruined-by-the-drugs) hair, but without one I have a spotty itchy scalp! Factor 50 or higher on face or exposed parts. I've been using a factor 70 Neutrogena sunscreen, but just found out that it is really toxic for the environment, so only using that on my face now. Long sleeved rash vest, or just a cotton vest over my swimsuit. My clothes always cover all of me - even when it is really hot. And I don't hang around in the sunshine afterwards (the hardest part - when everyone else is chatting and drinking coffee). Early morning or late afternoon (but watch the UV forecast - can still be high in midsummer) are best.
Yes, it is limiting. But it is your life and you have to find a way to live it the best way you can. I used to love sitting half-naked in the sun with a book and a cup of tea. I never do that now. But I'm going to say I have a good life - one that I enjoy - and while having to be really careful about the sun and not being able to sunbathe is a right royal pain, there are ways to still do what you love.
You will find a way through because you have to, even though it is making you sad right now. I do sympathise - because I have been there, but it is not the end of a good life, I promise.
Spanielmadlady has said it all and for me the fatigue 😩 is doubled by this heat, we all have to be so careful at all times but extra care is needed in this hot weather x
I can only agree with everyone else's comments. I love the sun but it gives me a rash, migraine and aching swollen joints. When I have to go out in the sun I cover up as much as possible including a hat. I was recommended La Roche-Posay Antihlios 50+ suncream as my skin reacts badly to many others. They do a special spray version for the face which is very light and quick to apply. It's not cheap but has worked really well for me.
As you can see Lulamay you're not alone. I too am photosensitive n have to cover up when I have to go out for an appointment. Otherwise I stay indoors during the day in spring summer n autumn. I make sure I book appts for early morning before the sun's rays become too strong. I check on the met office weather in my area n right at the bottom it tells us what the UV levels are at any particular time. It's currently going up to 8 at around 1pm here n the box is bright red..so it's a warning to everyone that the sun's rays are dangerous.I can't wear sunscreen either so I use UV protective clothing instead. There is quite a range of protective clothing now..if you check out rash vests n leggings they are usually listed as beachwear. I wear a rash vest n leggings then my lighter clothes over the top..UV protective wide brimmed hat..sunglasses..socks n closed in shoes..I even have to wear gloves (although I wear fingerless ones in summer). Don't forget your lips too..I wear SPF 50 lip balm!!
If you go onto the lupus UK website n scroll down to the section Eclipse you will find out about photosensitivity. U might have to change indoor lighting too if you're really photosensitive.
It's a good idea to note these changes in your symptom diary..that way you will find out what you can n cannot tolerate.
I have UV film on nearly all of the windows at home now..this helps to block out about 80% of UV but I can still see through the windows clearly.
It is one of the most bonkers symptoms of having lupus but over time you will learn what you can tolerate. Be patient with yourself. Remember that you're NOT alone!! It gives me great comfort when I'm all togged up to go out that there are many of us lupies who are having to do the same!! 🤠😎
Aloe Vera gel rubbed into your feet will help with the burning too.
You can still enjoy your gardening..you'll just have to do it early morning or late afternoon. We're advised to avoid sunlight between 11am-4pm as that's when UV builds up and then decreases again. Hope some of this helps 🤗💜🌈 xx
Hey girl 🤗How lovely to hear from you 😁I've been thinking about you n I'm sooo glad you're back!! I got a new hat from coolibar for this season..my most expensive one yet but well worth every penny 🤠😹Bamboo cardigan sounds lush too. You're looking good!! 💜🌈Xx
Thank you so much for replying. I hadn't even twigged that the headache was related to the sun. I'm staying indoors till the rash goes, as the 5 mins I was out hanging the washing up has reinflamed my feet. It was just a big shock as I thought I'd gotten away with it all these years and had no problems. Lupus is the gift that keeps giving.Good advice with the spf clothing, and I will keep trying different suncream till I find one I'm not allergic to. I'm going on amazon to buy myself a big sombrero. Thanks
I agree with everyone’s brilliant comments. People with SLE are severely allergic to UV light which including old fashioned strip lighting. La Roche Posay factor 50 is my go to, plus long clothes, large hats and scarves to protect my neck. I have also recently purchased a yellow pagoda parasol with a special UV lining which I love. Quirky I know but everyone around me understands. I still get red blotches and welts if I have missed anywhere but use a steroid cream prescribed my GP.
I'm being treated for RA not lupus but I hope my experience is helpful to someone. I started to develop similar rashes, then to big blistery patches under my eyes. Medics thought initially it was lupus and I was referred to Ninewells in Dundee for skin tests. They concluded - after a week of tests that my reaction was to the perfume in sunblock and moisturiser. I avoid overexposure to the sun, and use E45 cream regularly. There is a thing called Dundee cream which they offer to wear in the sun (a thick ointment) but I prefer to keep out of the sun and wear a hat.
Hi Lulamay, I feel for you. I remember coming in from the garden after hanging out nappies and finding a rash, just like yours , all over my arms. I now live with it all year round but obviously it is much more difficult to cope with in the summer. You might also check out your reaction to exposure to computer screens. I find working in a darkened room with the light on the computer turned down low, really helps. I agree with all the wise words from previous posts. I have found clothing from Solbari, an Australian company, really helps. The tops in the sensitive collection with UPF protection are expensive but great to wear. Also their neck protectors and fingerless gloves help a lot. I also like their suncream and use their face protection all year round. I like to know there are others like me that walk around in the summer covered from head to toe as it make me feel a little less crazy!
A lady stopped me this morning when I was out with the dogs and ask" are you not hot dressed like that " yes " i replied "but I'm photosensitive " she didn't know what to say. X
I feel your pain, when I go out in sun I’ve found Ultrasun is best for me. If I don’t wear my hat,I feel unwell and have to lie down, I love the sun but stay covered and you usually find me under a parasol. 😎
The only positive is that you can waft around in kaftans and large floppy hats like a star of the 1930s black and white movies. Just don’t forget to sunscreen your toes, fingers and tip of your nose as that’s all that will be showing.
I have SLE to and have to be very careful in the sun. I walk my dog before the sun's up and get my washing out quick. A dermatologist said to me, think of all those wrinkles you won't have😊 Keep going Lupus warriors
The first time I reacted very badly to the sun, a few decades ago, it started as a prickly heat type resh on sun exposed skin. Within a week, it escalated into large grape-like blisters and that was the beginning of my lupus journey, although it took a while to find out!
Do be careful. Like others have said, hats, close-weave baggy clothes, cotton socks etc help but keeping out of the sun is better as the heat can be just as bad. You do soon get used to it with sunset and woodland walks and knowing where the shady side of the street will be. I hang my washing out in the evening too when the weather is like this.. The best thing I've ever bought is a sun umbrella because it shades my whole top half and is cooler than a hat. I am prescribed Uvistst suncream but it's easier to just keep out of the sun. It's great for keeping people at a distance too! Good luck with adapting; you do get used to it.
Absolutely 💯 agree with everyone on here. I was diagnosed with SLE 10 year ago and if I go out in the sun I end up with rashes. I’m having a flare up now and I have hardly been out in the sun, it’s the heat that does me. I’ve been using cool patches, ice packs and a cooling cloth to relieve the symptoms. I wear my sun hat and uv sun wrap even to hang washing out. Like Tykle has said one of the best things I’ve also bought is a uv umbrella, plus it’s just easier to try to keep out of the sun. Give me a cold frosty day anytime, I’m happy. I’d rather be able to wrap up in my winter gear to go for a walk than go when the summer is here. I echo everything that Spanielmalady says and everyone else too.
It took me a while to adapt to it but I’m sure you’ll get there Lumlamay7, so wishing you good luck 😉
have you tried Altruist - it is a very effective sun screen developed by dermatologist and big % of sale profit goes to skin cancer charities. You can get it at reasonable cost on Amazon as well.
I am so sorry you are experiencing the frustration and sadness of lupus sun sensitivity. As others have said, there are ways around it -- the hats, good sunscreens ( with mexoryl are best, according to some studies), sun protective clothing. A less expensive option is Rit Sun Guard, a powder you can put in your washing that makes natural fabrics sun protective. There are a lot of losses with lupus, but this site is filled with lovely people who help each other and offer support.
If you have lupus, sunbathing usually has to come off your list of things to do. You can still spend time outside, but you need to use sunscreen and buy sun protection clothing. You can buy long shirts and pants that are equivalent to SPF 50, so you might buy some for when you want to go outside. And unfortunately cover your arms, legs, and feet with gardening clogs. And perhaps cotton gloves for your hands when you're hanging out washing too.
Try different brands of sunscreen because some may work better for you than others.
Also avoid going out during mid-day when the sun is the strongest. I go out in the early morning and evening when the sun is weak and low on the horizon and I stay in the shade.
Remember, every one of these episodes can also be causing damage to your internal organs that you can't see the damage, so you need to take it seriously. Sorry.
I bought myself some very pretty rash vests and palazzo pants. A uv umbrella straw hat and bought the la Roche posay spf50 sun cream for my face Superdrug had some Australian spray spf50 bondi, which seems to be OK so far. But I haven't actually been outside to test whether it all works yet.
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Not from the UK....hope that's OK.
Beware of the sun!
I'd be grateful for thoughts on the sun
Reaction to the sun... again! 
