does anyone with SLE not affected by the sun

[MsTMP]

hi all,

does anyone have SLE that does not get affected, or if you do what sort of symptoms do you normally get?

i have had to cancel a holiday in the Dominican republic under advisement from my doctor at hospital.

[Natura]

Hi MSTMP...i started itching in the sun. Then when i went in the ocean, my skin was stinging. (Salt water good for infections. So i assume my skin was inflamed even though I didnt know it). Then the sun shining on my skin felt like it was burning me. I found that you can wear a light long sleeve cover up and a hat and still go out.

I also noticed when I slathered cold pressed sesame oil on it protected my skin. If you dont mind being oily. You could always go out in the later afternoons when the sun is coming down.

Sorry you had to cancel your trip.

[MsTMP in reply to Natura]

Thanks for getting back to me. Do you normally get those type of symptoms with your form or lupus?

[Natura in reply to MsTMP]

Yes. I still bike ride and wear a long sleeve shirt (in the very early morning or evening when the sun is setting) And I still went to Disney a year ago. It was too hot anyway to be out in the day there. We sat around the pool in midday. I looked for a tree everywhere. I did have a problem with my left leg from all the walking. I had to wear a compression sock for the pain. It helped. I survived.

Being outdoors is my joy in life. I wont give that up for anything. I modify my lifestyle and make it work.

My lupus is considered low end. I dont know how others who are more affected deal with the sun.

Take care

[LupieMani]

There are many people who don't have the sun allergy but the majority of those who do will burn or get an eruption of rashes.

Others like myself barely break out but get terrible systemic symptoms. My eyes dry out, my joints get inflamed, and fatigue and malaise increase exponentially.

Also, if I am under certain UV lights for more than a minute, my skin starts stinging and Itching something crazy.

Unfortunately, sunscreen does nothing for me, but I am constantly dressed in long sleeved black clothes (they reduce UV absorption), a hat, and on really sunny days, I go all Nanny McPhee with a black umbrella too.

I'm sorry you had to cancel your holiday but if your disease is active, it would have been an extremely risky move.

[Barbara17]

I'm sorry you had to cancel your holiday. I was told I could continue to go on holiday as normal but take care in the sun. This meant factor 50 slathered on and wearing long sleeved shirts, long trousers and a sun hat! However it did let me enjoy a family holiday in Florida in 90 degree heat with no ill effects. I would say the sunscreen does stain clothing so I now go to Primark and buy a few (very) cheap shirts which can be thrown away later. Also remember to let your insurance company know. I use Explorer who are very understanding and not too expensive. Don't let it spoil your life!

[Kirst83]

Hi there. I have SLE and have had it for 15 years if not more once i was finally diagnosed. Even living here in Scotland i have to make sure I'm sun blocked up and covered up as much as possible. I get red lesion's, butterfly rash, swell up and feel exhausted in the sun and don't particularly like going out it but you need to just get on. As for holidays, i've been on a few holidays abroad and aslong as I'm careful, cover up, plenty of sunblock on and sit in the shade as often as i can i manage ok. When your holiday it's different, no work and no rushing around. I have arthritis too so the warmth does good for bones.

[MsTMP in reply to Kirst83]

thanks for this. i have recently been diagnosed so i need to figure out how badly my symptoms flare up

[Barbara17 in reply to Kirst83]

Hi, Kirst83. I'm in Scotland too. As you'll know it can make it more difficult as we have the 'four seasons in one day' type of weather. Just means you have to carry factor 50 everywhere you go, plus hat, scarf, shirt, etc etc........ makes life interesting!

[Deegraham in reply to Kirst83]

Hi there

We live in the Highlands. My 18yr old was diagnosed 2 weeks ago with severe lupus and lupus nephritis and pneumonitis. He is improving now thanks to the drugs. We haven't got arund to talking sun yet cos he is still unwell. But I was wondering about when it's not summer. Do you still have to wear suncream?? He is a cyclist and hopes to get back to that.

Thankyou

[Wendy39 in reply to Deegraham]

Sorry to read about your son being so unwell. It must be a difficult time for you all. Has he been seen by a dermatologist? I was told to wear Factor 50 all year round. But like lupus, photosensitivity is on a scale. Some people with lupus aren't sensitive and still sun bath - whilst at the other end of the spectrum some people need special coverings for the windows at home and limit the time they go outside. It's a bit of trial and error to find where you are in between. I wear special SPF 50+ clothing and cover that way. Then SPF 50 cream on Face hands and feet (when wearing sandals). I have been told to wear a hat every time I go out. But like I said, we are all different. There were two posts yesterday about sun creams and skin protection. Of course, the sun won't only trigger skin issues, in some it can trigger a flare of systemic issues too. So take a look at a few posts here. Look at the Lupus UK site as they have a leaflet on photo sensitivity and ask about a referral to a Consultant Dermatologist. Hope I've helped a little. Best wishes, Wendy

[Wendy39 in reply to Deegraham]

healthunlocked.com/lupusuk/...

[Wendy39 in reply to Deegraham]

healthunlocked.com/lupusuk/...

[MandaM]

I dont stop going on holiday because of the sun. I deep burn VERY quickly so take a factor 50 suncream with me which i get on prescription. I don't sunbath, boring anyway, I do walk out in the sun but take a cover up and duck and dive into the shade. I should wear a hat but I don't do hats and they don't do me. Im off to Kos in May. If I choose to go away abroad I always go at the beginning of the season when the temperatures aren't high and as a bonus its really cheap to go. It is very uncomfortable on the planes though and makes me ill the next day. I have been to Mauritius in high season as my daughter decided to marry there but I hated every minute and hid inside or in the shade. I felt ill & struggled with the flights. On return on changing planes at Dubai I looked so bad I was almost refused to board the plane. I felt awful for a long time after that Mauritius trip. It's a gamble you take. Personally I much prefer a UK holiday with hubby and our 3 dogs. There's loads of lovely places to explore & if you're poorly or need to go to hospital there's no worries about costs.

[milkwoman]

I don't get any rashes but at times, being in the sun can make me fatigued and achy the next day. Being on Plaquenil has helped and I do try to limit exposure BUT I am a "summer-kind-of-girl" and refuse to stop enjoying the sunshine. I now just try to be smarter about it.

[Fennella02]

I don't get any skin lesions with my SLE nor hair loss and never have done. I'm a very 'outdoorsy' kind of person and feel almost a compulsion to be outside as much as I can. I love the sun and find that, although I get no skin lesions etc from exposure, I am easily made super-sensitive with certain OTC medications and antibiotics which will then trigger acute bouts of neuropathic pain. I do notice a definite increase in frequency/severity of my flares from sun exposure and can guarantee a flare the moment we land in whatever sunny country we have chosen for our summer holiday. This happens every single time 🙁🙁

[Maureenpearl]

I am black and the sun affects me also, I get a rash and itching if I don't put factor 50 suncream on. During the summer I try not to stay in the sun but I do wear sun dresses and a hot.

When i'm hanging the clothes on the line outside in the summer if feels as if I have no hair on, I can feel the sun beating down on my head.

Please remember to wear sun glasses as the sun can and does affect our eyes.

[MsTMP in reply to Maureenpearl]

Yeah i am black also. Thanks for getting back to me. As i am due to go Jamaica next year and i dont wanna miss it

[Rusty26]

I've just been to the Caribbean for 2 weeks , Cuba in September, and Malta last year, I have NEVER had a flare due to the sun, and I am a sunbather.. Maybe just lucky... Last flare was February 2016... For no apparent reason!! And I only use factor 30... Been diagnosed 4 years... Hard to advise , as we all react in different ways 😀😀

[MsTMP in reply to Rusty26]

That is defo reassuring lol thanks

[gogspr]

Think you GP was wrong, he should have given good advice as opposed to saying not to go. I worked in the Australian outback for a number of years and have always enjoyed the sun in the UK and southern Europe. WE have had a winter holiday in India for over 20 years. Diagnosed with SLE in 2014 still enjoy the sun but just take sensible care, factor 50, 20 mins max in full sun etc.

Appreciate some Luppies have big problems with light of all sorts - handling the problem is not easy but, you have to be prepared to explore all possibilities.

[katidid]

I never had an issue with the sun until my first flare. And even then we all thought I had developed some totally random face rash due to allergies. Wasn't until I also noticed difficulty breathing and swallowing when I was exercising outside did I think twice about the rash.

I had switched from running indoors to on a mountain outdoors with no sunblock. Stupid, but we think that's probably what kicked it into high gear.

I live in sunny LA so can't avoid light, but I'll tell you that more so than a rash sun and HEAT make me feel so tired and too much can lead to an entire day of being in bed. So, like everyone here, I'm just careful now outdoors. Cover up, sunscreen and look for shade when possible.

I would do this even if you don't yet have a sun reaction. I think if I had, I could have stopped some if this from getting so bad.

[MandaM]

Just to add for those that are saying they sunbath...immune suppression medication causes a much raised chance of developing skin cancer which is why we are warned not to sunbath. on these meds it is advised that you have a whole body skin check once a year with a dermatologist. This is a protocol.

[Wendy39 in reply to MandaM]

I have never heard of this before. I'm on 3g of MMF a day and although I knew there was an increased cancer risk I didn't know about the yearly checks??? It doesn't surprise me with my medics but I need to check that out.

And you're right, from what I've read, no one with lupus should be actively sun bathing.

[Purpletop]

Did the doctor advised against the holiday primarily because of the sun?? There is sun everywhere and as long as you protect yourself with sun block and clothing, you can enjoy the warmth at least.

I've been on beach holidays since I've been diagnosed, even to very sunny countries such as the Maldives. Yes, it's uncomfortable to be dressed head to toe during the day and covered in sun tan lotion but it's good to spend time with my family and remember there is life outside the illness.

I do look like Snow White in the evenings when I go to dinner but that's when I get to enjoy the feel of sea breeze on my naked arms and I get to unburden the layers of clothing.

Even when I do cultural holidays when there is a lot of visiting of sun drenched places I go out in the day but again, cover my head properly with SPF wide brim hat, SPF gloves, long trousers, socks and trainers, long sleeves. But I get used to the heat and I get to enjoy what I'm seeing.

I don't spend many hours in the sun (probably 3-4 maximum) even so covered but it's a joy to be somewhere else and forget for a moment that I'm virtually house bound by this illness.

I take care to drink lots of water and I usually research the place I'm going to make sure I'm within 30 - 40 mins from a proper hospital. Even in the Maldives I chose a hotel that was a 25mins boat ride to main island and hospital. Just as a precaution.

Of course, we each have our own severity of illness and going against medical advice is not ideal.

I'm sure your doctor has your best interests at heart and had good reason for suggesting to avoid the holiday but it would be good if he/she can explain the reason for the restrictions and work with you to find ways to accommodate alternatives.

[Purpletop in reply to Purpletop]

P.s. I'm also on mycophenolate which increases the risk of skin cancer, so that's another reason to cover myself in the sun.

[Wendy39 in reply to Purpletop]

Me too purpletop. I'm on the max dose now. Did you know that due to increased risk of skin cancer we're supposed to have an annual check up? That was news to me, in the reply above?

[Purpletop in reply to Wendy39]

I didn't know that either - I'll get the rheumatologist to write to the GP

[MsTMP in reply to Purpletop]

Hiya

Thanks for this. I think is due to me only being recently diagnosed so they dont know the extent of my condition yet so it may just a precaution. Xx

[Wendy39]

I've only just seen your post and want to reply fully but am on my way out to watch my son play rugby. I have SCLE and am very Sun sensitive. So have been been involved in a few discussions on here about sun protection. I went to Italy on holiday for 2 weeks in August with my family and two other families last year. I had a wonderful time. I have to be extremely careful but I strongly feel life is for living. And what about people with lupus who live in Spain, Italy, Australia, America and even the Dominican Republic??? Are they told to move to Britain to avoid the sunny weather? No they have to live their lives, in the sun and heat. I will reply fully later but I am sure a similar discussion came up last year with someone's doctor telling them to cancel a holiday. Best wishes. Wendy

[Wendy39]

Hello again. Back from the rugby and can reply to you properly.

I think if I remember correctly that you have only recently been diagnosed. I'm glad you found this site. The support is wonderful. It's been a life line for me, since my diagnosis in October 2013. And you are posting and asking questions which is great. You will learn so much from here.

I am very much a person who needs to research and find answers. So between this site and reading info on the Lupus UK site and buying books from them, I have got through.

I had a positive ANA, ENA and Anti-RO blood test at diagnosis plus all the symptoms that I was experiencing. This included the malar rash, hair loss and sun induced rashes. This led to the SCLE diagnosis, which is I think about 10% of us lupies. The sun is a very big trigger for us, but not the only trigger for me.

I have 3 children, who were aged 9, 8 and 5 when I was diagnosed. We had been fortunate enough to have holidays abroad and my children were used to having holidays in the sun. I strongly felt that I must try to have a holiday abroad for their sake, for my husbands and myself. At least if I tried once, I would know. I owed them that.

The early years of a diagnosis of lupus are definitely finding your way and working out what works for you and what doesn't. Some people can work full time. Others part time. Others can't work. Some can run. Some can't. Some can still enjoy the sun. Some can't. Only you can work it out for yourself. Trial and error. Some are not sun sensitive. Some are very sun sensitive. But there is a broad spectrum in between.

So 2014 we holidayed in London, as I was still struggling to find my way with the sun and I was weary of getting it all under control first.

But in March 2015 we went to Crete. I didn't ask any doctors about it at all. It was early in the season. Temps were about 26 degrees. Not too hot for my first holiday abroad. We went all inclusive and a week. The children were at that age where they just wanted the pool and we just needed a rest. I didn't have to wash, iron, cook, clean, do the school run. It was a lovely rest. I wore my floppy hat, sun cream, rash vests and long wide legged trousers, sat under an umbrella, read a book, whilst my husband fooled around in the pool with the children. It was lovely. I also have osteoarthritis so the warmth on my bones was very welcome.

When I came back and saw my Rheumy, I told her we'd been abroad and she was absolutely horrified. I told her how with extra time to myself, I'd been able to apply my sun screen diligently and rest a lot and it had worked very well.

They seem to forget we have lives. I have a family and I have children. They want to live a normal life and I want to at least try, for their sake. For me, it's quality of life that important. Here and now. Life is for living as fully as we can.

Last year I went to Italy, two weeks in August which was a lot hotter. But with my careful clothing (rash vests and Factor 50+ clothing) and hat, sunglasses, cream, hand held sun parasol - Factor 50+, using air conditioning when necessary, etc I managed. I also paced myself re day trips. We had a day trip out and then a day at home. WE sat under umbrellas or inside for a meal, to cool down. I rested on the loungers and under cover when at home. We had wonderful holiday and I wasn't ill when I got home. (I was overlapping between starting MMF and taking steroids but my Consultant Dermatologist at the time was very happy to give me steroids to help me enjoy my family holiday and was not judgmental in the slightest).

Here is a link to my recent reply to someone about the sun protection clothing etc with tips about what I wear.

healthunlocked.com/lupusuk/...

Like I said, there are people with lupus living in hot countries, Italy, Spain, Australia etc. They live in hot, sunny climes all of the time, they have to find a way to cope.

I am saying this from the perspective of someone who is still learning, as we all are with this illness. We are constantly learning. And our boundaries are constantly changing. We have to constantly adapt. I am lucky enough not to have internal organ involvement, my kidneys, lungs and liver are not affected. If they were, my experimental attitude might have to change.

But I do find it difficult to accept when a doctor tells someone to cancel a holiday.

Do you have internal organ involvement? Have you had any skin issues?

If you have any more questions, please ask. I'd be happy to try to help.

Best wishes.

Wendy

[MsTMP in reply to Wendy39]

Hi Wendy,

Thanks for your reply. Im currently having issues with my liver and i the sun doesnt really effect me but since being diagnosed im not really sure xx

[Wendy39 in reply to MsTMP]

Hello. OK with liver involvement maybe your doctor is being cautious and it is the start of your journey. It is a huge learning curve to discover what you can and can't do. But in time you may be able to have holidays abroad and cope very well, if you are sensible. Have you managed to get a refund for this holiday?

[riannabri]

Any sunlight makes me flare within minutes, the sun must set of Antibodies so quickly as I did a private test in spain as the local pharmacy here runs them, I did one before sun exposure and my ANA was low 1:120 and then I sat in the sun for 20 minutes and retested and it was 1:320

So for me and many others I can not have any sun on me whatsoever

I even had the car dermaguarded

I live in Spain 5 months of the year and find you can easily see the sun but have to totally keep out of it so in restuarants Im outside but under cover, on scooter have factor 50 and a umbrella that blocks out sun and other times a nice big sun hat