hi all
Was just diagnosed today with lupus
I’m still reeling
I left the rheumatologists office and of course thought of all the questions afterwards
I’ve never had any rash or sensitivity to sunlight. A large part of my life is spent at the beach and in the water …I’m now terrified that I won’t be able to do that any more
Is anyone else with lupus able to tolerate the sun? Does everyone have photosensitivity even if they don’t get the rash? Does it always trigger symptoms ?
Hello. I’m sorry you were given the lupus diagnosis. What are your symptoms? Everyone is different. MrsMarigold
thanks for replying
My symptoms are positive Ana, hair loss, joint pain , dry mouth and eyes and my mum has lupus… so I’m lucky (maybe so far) that it’s “mild”.
Have never had a rash or photosensitivity
I spend a lot of time in the sun (always with a hat and factor 50). I surf i bodyboard I sail. These things I’ve done all my life and they are my life and my life with my kids. We live on the beach and spend our lives there. We are always outdoors. It’s when I’m at my happiest.
I guess I left with more questions than answers for the rheumatologist
I’m sorry to everyone for posting this question when so many it seems suffer so much
Morning, The prescription (as I call it) for lupus patients, on my experience, is we are all unique and different. Some have to wear full haz suits, others can tolerate the sun better. I know someone who pushed the boat out and went to Oz and she was almost hospitalised. I have been in last 6 months to South Africa and Caribbean, no issues. I think daily steroids helps (most lupus sufferers take them). I do not ‘sunbathe’, I stay under a parasol around pool etc but it doesn’t affect my holiday. I sometimes use a hat and sun sense factor 50 on prescription. I am naturally very blonde, blue eyed, pale skin. I cried whilst in hospital 5 years ago when I was diagnosed. It is a hidden disease, research it, talk to other sufferers, connect well with yr rheumatologist and lupus nurse. Make it as easy as possible for yourself. Try to stay positive in the difficult days. Hope that helps. Enjoy life 😊
hi
Thanks so much for the reply
If you see my reply above it just feels like if I can’t be outdoors my whole life will change. I have young kids who spend their lives with me on the beach surfing and swimming. Surfing sparks joy in me. I just can’t believe that from spending my life outdoors in the sunshine (always safely with spf 50 and a hat I never ever burn) I might not be able to do that any more .
I know it seems like a trivial thing to worry about when so many others suffer so much but it’s been a rough few years and I take all the joy I can from
The moments I can . I’m just back from holidays in france where I spent 10 days in the sunshine and I don’t have a single rash.
I live in Ireland so it’s not like the sun is very strong here maybe that’s it
Who knows
Stupid lupus eh - I just wish I had more answers . I’ve had further bloods done so I guess they’ll tell more and see how prevalent it is after my holidays (before diagnosis).
Thanks for the reply
yep….. i know what you mean. Im heading for a non reversible colostomy. Im a decent cyclist. If I can’t cycle I’m thinking it will be very difficult at first to adjust, find other sports. Mental health and all that! Depends on where stoma is positioned etc
Best wishes and keep going
sorry to hear that
Yes it’s when you find things that spark joy after many moments of darkness, you cling to them. Mental health is as important as physical.
I really hope your surgery goes well and you find a way to keep doing what you love.
Hi, it must be very hard for you coming to term with your new diagnosis. It can be difficult to think of all your questions when with consultant. I tend to make a list before I go and if I forget something I send an E Mail to his Secretary.
Lovely to chat with someone from Ireland as our Health System works different than in UK,. I have lupus and Sjögren’s syndrome. I also suffer with skin lupus. This summer has been the most difficult with photo sensitivity. My Dermatologist has put me on tablets for photo sensitivity. I also ordered a rash guard long sleeved t shirt on line the sort surfers use as sun can cause the rash through clothes. That is not to say this will happen you we are all different . It is only this summer I have found it more difficult with photosensitivity this can also be hard on your eyes wear slight tinted glasses all year. Again the photosensitivity may not happen to you.
Try not to think this diagnosis will change everything. Most of us lupus/Sjogrens sufferers have good times and flares and we learn as time goes by to try to manage and adjust.
Good luck and enjoy the beach 🌞☀️🏄🏼♂️
hi
Yes the health system is very different here
I am lucky - I went private -pushed my GP to do screening tests and when ANA was positive I got the referral to rheumatologist.
It took 3 months (which here is not very long to wait). I saw him yesterday and on the same day went for further bloods in the hospital and X-rays. All in one day. It cost a fortune (€800 in total) but I was so so fortunate tk be able to afford that and claim some hopefully back on health insurance.
Yes a new diagnosis is hard. I’m grieving the old me which sounds silly and again in the grand scheme of things I’m doing good. Yes I have pain but I’m managing and I can do all the fun things with my 4 kids.
I guess my confusion on the UV thing is that my mums rheumatologist in all her years going never mentioned UV and even told her to go out for 15 mins in sunshine without sun cream for vitamin d. Now I know mum has photosensitivity and she gets that scaly rash on her skin in recent years on her legs so I have told her to go back to rheumatologist to question her about that.
Anyways yes I’m just feeling sorry for myself , unsure of what the future holds but once I give myself a day or two to wallow in self pity I’ll give myself a giant kick up thr arse and realize all the good things in my life. There’s always better (if I didn’t have lupus) and always worse (being in hospital showed me that yesterday).
Thanks it’s really good to chat xxx
Thank you for your reply.
When I was diagnosed the Dermatologist did skin biopsy, and the rheumatologist did a lip biopsy, both positive for lupus and sjögren’s. Regarding your Mum and photo sensitivity, I was prescribed vitamin D (1600) two tablets per day by the Dermatilogist.
Like you I am attending both privately in The Hermitage. Yes the initial visits and test especially bloods can be so expensive. If the bloods are standard ones I get my GP to do them and I send results to Consultant. I tried lots of medications before they found one that started to work. It really is trial and error.(on rituximab infusion six monthly, maintenance steroids and recently went back on mepacrin plus some othe meds.
I have found this web site so helpful and you understand what your feeling is not your imagination. You sound like a very positive person I hope things improve for you soon. We are all allowed to wallow now and then.
Marian x
yes the rheumatologist ordered I think 6 different blood tests
Including repeat Ana, complement and a few others I think are relating to blood clotting etc
And X-ray of my hands
So he said he would write with results ina. Couple of weeks
So am kind of in a lupus limbo right now! The tests will give him indication of levels in my system I think (again he didn’t explain much). He said I could start on the hydrochoroquine straight away but I asked was it to treat symptoms or prevent further progression. Right now I’m ok with my
Symptoms and can manage them ok and he said decision was mine and didn’t explain if it was necessary to prevent lupus from getting worse.
So yes more questions than answers
Hydroxychloroquine is an interesting drug. It actually started out as an anti-malarial, but it was discovered that in many lupus patients who took it for that, they had fewer lupus flares. It apparently changes your body chemistry just enough that your body no longer feels the need to attack itself.
I was on it for about 3 years, until my lupus calmed down, then I didn't seem to need it anymore, as I was successfully managing mine through some lifestyle changes to avoid my triggers and stress reduction.
It does have some side effects though. I found it seemed to make me a bit more tired and a bit weak. And it can negatively impact your eyes, so you need regular eye exams to make sure it is not changing your eyes in negative ways.
I would go on it again if I had a bad flare at least until it knocked out the flare.
It's not just sun but uv. Just light in the summer months can affect you. Be sun safe and keep doing what your doing but as soon as you feel rough or get rashes anywhere then being in the sun will no longer be an option between 10 and 4 between april and august at least. Summer light is a major cause of flare ups so don't ignore symptoms. Be aware hydroxychlorouquine can make you more sun sensitive too. If you've got kids protection your health and not risking organ damage is a must. Read info on genuine lupus sites, list
Sorry pressed reply! Look at lupus uk info, list
Listen to podcasts with consultants. Learn as much as you can about lupus and how it acts. Maybe join a lupus uk local group to you,
mine varies, this summer with factor 50, a hat and covering I have been building my garden. Normally I would get tired and feel sick but bar those really hot days I have been fine. I even managed a swim in the sea between sewage dumps. Other summers I have had to stay indoors or in shade.
It’s about learning g how your body works, and your medication - hydroxychloroquine increased my light sensitivity.
Lupus is a tough diagnosis, and it is natural that with your lifestyle - and one that you so happily share with your children - sun restriction is a big factor in feeling the loss.
Honestly, though I have take a lot of measures to cope with photosensitivity, on occasions I look back at the years of worry, flares, and restrictions concerning the sun and feel sad to have had to cope with this.
I think about a third of lupus patients are not photosensitive. You may be in that one third. It is great you already are used to sunscreen. You might want to run by your rheumatologist if they think sunscreen and hats is adequate for you since you have never experienced symptoms. If you want any other ideas for safe ways to be in the sun, you have will get a ton of suggestions here!
Best of luck. Let’s make sure you can safely enjoy your life. I look like a mummy but am so happy there are now face covers that allow me to go swimming. 🏊🏻♂️
XX k
And yes, I have gotten fever. nausea and aches with no rash.
I wasn't sun-sensitive to begin with, I developed it after about 4 years.
It is possible to live with it, you just need to take precautions. Factor 50 sun screen is your friend. During the summer months I put it all my skin, regardless of whether that skin will be exposed to the sun. You can get special facial sun screen that is less sticky and shiny, it's worth paying for because it lasts pretty well.
Then I put long trousers and long sleeved tops on and a broad brimmed hat.
If it's a special occasion like a wedding then I either put on a long dress with some sleeves or use a shawl.
You can buy factor 50 clothing, although it's usually aimed at surfers in Australia. If you search the lupus boards you will find helpful links and information on the best clothing. Thick blue denim is good, linen is bad at sun protection. Sit/walk in the shade when it's sunny, use sun screen if it's cloudy in the summer still.
I made it through a very sunny day at the seaside last week and was just tired the day after. The first time I did that after realising I had sun sensitivity I made myself ill for a fortnight, because I thought linen trousers on their own would be enough, they aren't 
Edit - just putting 'search the boards' wasn't a very sensible thing for me to say when you have so much to think about, here are a couple of threads:
healthunlocked.com/lupusuk/...
healthunlocked.com/lupusuk/...
healthunlocked.com/lupusuk/...
You are like so many - great story to share. I have LUPUS FRIENDS who “also” taught us we have to WEAR “SUNSCREEN” all OVER - even “UNDER CLOTHES” …..
She would get a horrific RED BUMPY RASH all over legs - as you said SUNSCREEN all over under clothiers - GREAT IDEA!💜
I do buy SPF CLOTHING now & have a GREAT “SUN UMBRELLA “ w/SPF. & pretty COTTON GLOVES W/SPF to wear if out when can’t be avoided.
I am realizing now - THAT “HEAT & extreme HUMIDITY “ is also a problem to cause FLARES, even when not in REFLECTED OR DIRECT SUNLIGHT..
Well after years growing up in the SUN:
Lifeguard
Swim Coach
Beach Trips w/Family & Friends -
It took until mid-forties before I noticed EVIDENCE of RASH ON arms (at first) , then head /SCALP IRRIGATION & Itching at a SKI SLOPE from DIRECT SUN -
Still I didn’t CONNECT the DOTS.
Not until a FULL DAY on beach building sand castles w/children did I come in & FELT LIKE I had been hit by a TRAIN.
- MIGRAINE, Chest Pain, Extreme FATIGUE, & lasted several Days & in Airport couldn’t even PULL LUGGAGE - too heavy (it was on WHEELS 🤔😣😧) felt great STRESS in Chest - well….. I finally LEARNED, I TOO - couldn’t handle SUN & FLORESCENT LIGHTS IN STORES “any more”.
Big box Stores - I realized I was DEAD after 30 minutes walking under those LIGHTS 😣
So - we are all different, but most LUPUS PATIENTS do find that Lupus FLARES can be caused from SUN EXPOSURE- not just Rashes.
I learned to always pick HOTELS/Resorts with PALM TREES - to always stay under w/kids on beaches & VERY LARGE UMBRELLAS / GOOD ORGANIC SUNSCREEN 50+ , etc.
It is HARD TO GIVE UP- But Lupus Flares are not worth one-two days of SUN exposure “anymore” - SUN CLOTHING W/SPF help, RITZ “SUNGIARD” to wash w/clothing adding SPF 30, HATS, SUN UMBRELLA W/SPF PROTECTION OF 100 (buy on Amazon) -SUN GLASSES, long sleeves (in CAR ESPECIALLY- reflection through WINDOWS literally “HURTS”😟, etc
You will always Have YOUNG LOOKING SKIN 💜😊💜 We FIND “new ways to enjoy beach - WALKS AT NIGHT on Beach, swim in pools at night, walk on TREELINED TRAILS, There is always an option to find our way on this journey 😎💜😊
healthline.com/health/lupus...
aad.org/public/diseases/a-z...
I was diagnosed last year and have found this playlist useful
youtube.com/playlist?list=P...
Photosensitivity is covered
Hi,
Sorry to hear about your new lupus diagnosis.😰😱
Photosensitivity is a real and important issue with lupus.
It’s frequently discussed on this site.
PLEASE read all the posts on this very recent link.
There are some 37 responses, most are very helpful:
healthunlocked.com/lupusuk/...
Unfortunately with lupus it’s not only the skin that uv light (within sunlight) affects but can affect the whole body ie systemically.
healthunlocked.com/lupusuk/...
BW
Used to be a lifeguard, played tennis, loved walking etc
Now when it is cloudy, I get lots of things done...I really enjoy dull weather days like never before.
I'm picking up on hobbies I did not have the chance to do earlier.
I have not changed the core of who I am, but maybe expanded my view of self a bit.
thanks everyone for the responses
I guess my rheumatologist didn’t stress this about uv-he just said wear sunblock and take vitamin d because uv may be trigger
It’s over after googling I’ve found all the further information
I’m just feeling sorry for myself
I used to be a pianist and yoga teacher and had to give both up arthritis in my wrists. They were my loved and my passion and it killed me at the time:
I struggled with depression for years before recently finding surfing (I always sailed and bodyboarded but learnt surfing with my kids in recent years) and it has brought so much light back into my life
I really feel the rheumatologist should have made more of an issue about this
He didn’t give me much info
Just offered the meds (hydrochoroquine (sp?)
And said you have lupus
No other dos and dont and I will write to you with your results of bloods and X-rays etc
Unfortunately, the majority of lupus patients are sensitive to the sun, even if it doesn't translate directly into a rash. It could translate into other systemic problems, so you have to be careful with the sun and make some lifestyle changes, but perhaps not as drastic as you imagine.
The reason the sun is a problem is that lupus is about your body being overactive in attacking its own tissue which your body mistakes for a pathogen of some kind. So an overactive immune system. Solar radiation does actually damage your skin cells because it is radiation. Then your immune system sees that damage in your skin cells, and goes into overdrive attacking because it thinks those damaged cells are an invader. So you can get inflammation not only in your skin, but also in other organs since the sun has caused your body to go into immune system overdrive.
That's the bad news, but the good news is you can do things about this that can lower the damage and hence reduce the trigger that causes the lupus to flare. For example, when you surf, there is available sun blocking swim shirts/pants you can wear on the beach. And wear a sun shield for your neck, and sun protective skull cap on your head, and sun blocking gloves on your hands. Then waterproof sunblock on whatever small exposed areas there still are on your face.
Google sun protective clothing for the beach. Or rash guard clothing. Another tip is to avoid the outdoors when the sun is the strongest, around mid-day. So plan outdoor activities in the earlier morning, late afternoon, or evening.
So you can't surf in a bikini or lay on the beach with your skin exposed anymore, but you can still go to the beach and surf if you have the appropriate clothing protection for it. Bring an umbrella too for sitting on the beach if you don't wear sun protection clothing while your kids play.
I have managed my lupus very successfully for almost 3 decades now, but it is because I experimented early on to learn what my triggers were, and avoided them. And learned about the tools you can use to compensate for your problems, like sun guard clothing if you want to spend time outside in the sun.
Note that your hair loss could be because the sun is beating down hard on the top of your head and the inflammation there is causing your hair to fall out. My hair loss is always worse in summer. Wear a sun protection hat when you're out walking around. And use mild hair shampoo and hair products to not put more chemicals on your head to irritate it.
Sad to say, many lupus patients have trouble with sulfites (anything sulfur) which is in many shampoos. Find a sulfate free shampoo. Also, if you're a wine drinker, you may need to give that up because there is always sulfites in wine and sulfites are murder for lupus patients. I had to give that up, but I switched to a clear drink like vodka when I want a drink, but wine is off my list. The wine was causing vasculitis which can be very serious.
So do the research to look for lupus triggers, and find ways to either stop those things, or find a tool that can mitigate the problem.
And stress is often the worst trigger, since stress causes your immune system to go into overdrive. You need extra rest and relaxation when you have lupus to prevent flares. So the surfing might actually help you relax and help the lupus if you get the proper clothing and practice avoiding sun when you don't have protection on.
So don't panic. It takes time to figure out what your own personal triggers are. Some things you will have to change and/or mitigate, but it's not the end of the world or of all joy!
thanks for the reply
So living in Ireland means I would never ever ever surf in a bikini 
I could never: it’s the Atlantic Ocean and at times is only 5 degrees Celsius. Even in summer I’m in a wetsuit so yes I believe I can continue to surf
It’s just we all hang out on the beach as a family often spending hours there. Again being Ireland the hot sunny days are few and far between but the uv is always there regardless
I’ve always been sun safe. Having had thin hair all my life I wear a hat all day every day in summer and wear spf50 all over and I still tan.
Having come back from a holiday after 10 days in the sun (pre diagnosis). Out all day every day at water parks surfing (this time in short wetsuit) and alwyss with sunblock but you couldn’t possibly have gotten more Uv exposure.
It will be interesting to see how active the disease is after that from the bloods.
I only have mild a symtpoms that are managable without medication so I will definitely only go on the meds if it’s something I need for progression of disease or to prevent organ involvement etc.
anyways I’m still in denial phase so will see what further tests say and what rheumatologist says after them. It’s only after coming on this forum I realized how much of an issue UV is as again rheumatologist mentioned it barely in passing so it’s confusing to me :
Hi
It’ll all be overwhelming right now and getting additional info and reading up is necessary, but also makes it feel more scary and real too. Try not to worry too much until you know the full score from your blood tests - this is so much easier said than done, I know. Even though I’d strongly suspected I’d got Lupus, when I received the diagnosis it felt like a huge shock - head spiralling in all directions with questions and ‘what if’s’ for a little while. It does quieten down.
My rheumatologist only said I must wear a hat, sunglasses and factor 50 if outside and just to be careful as I’m sun sensitive - that’s it! They don’t always have all the answers and it can be trial and error in working out for yourself what you can do/tolerate without any ill effects - we are all so different. Lupus UK has lots of sound info that will help you too. Plus, ask away on here, someone usually has an answer!
Practically, factor 50 is non negotiable. Plus, if later it’s needed, you can buy uv filtering clothing for on the beach/sea, physical uv screens - sort of like a top of a tent/sunshade type thing if you are outside for extended periods (if the kids don’t hog it!). It takes a bit of getting your head around the fact you may need some of this stuff, but you will do - in time, especially if it helps and it means you can maintain much of your beach life (which sounds idyllic btw) - it may a little tweaking, not losing necessarily.
Go easy on yourself right now. Things will settle down into something that feels manageable and do-able, but you need time to process. ✨
You can buy clothing that is not meant for the water that is sun shielding and not all that noticeably different than normal clothes if you want to be out and about with your family. You'll not be the height of fashion, but you will be able to live a normal life.
Also note that you can still get sun damage on cloudy days, just not as much. So just protect yourself whenever you go outside. And sun screen can wash off especially in salt water, so better to wear full length sun protecting clothing when surfing.
And no sun bathing per se. You can always find ways to screen yourself from the sun. For example, you go out with your family to a lunch outside on a patio, you take a seat that is not in direct sun, and you wear your sun protecting clothes.
Hi. Sorry to hear about your diagnosis. As mentioned, lupus affects everyone differently. I personally cannot do the sun, I have extreme sensitivity. I get rashes, headache and joint pains. There is really so much to learn about lupus, somethings are also trial and error, even the medication. Do bear in mind sun exposure doesn't only cause rashes but it can affect the joints and cause fatigue. Also meds like Hydroxychloroquine causes sensitivity. Write your questions down for when you next visit your rheumatologist and continue to do your research. I have learnt so much here, I'm sure you will too. All the best on this journey.
Hi, I have Lupus for 24+ years. First I didn’t know I’m not supposed to go to the beach spent 3 hours there I felt no energy and slept for 3 straight days. Summer is coming, you should dress long sleeve long pants and hat don’t forget sunscreen. Dinner feel sad just enjoy your summer with taking caution and don’t stay too long outside max is 15mins and chill out little.
Newly diagnosed - Hydroxychloroquine question
Newly diagnosed 
Photosensitivity, malar rash and fatique!
Newly diagnosed
