A photosensitivity question: Hello lovely people, I... - LUPUS UK

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A photosensitivity question

123MrsG
123MrsG

Hello lovely people,

I wondered if anyone can help me to understand photosensitivity a bit better.

I always get a rash when I go in the sun if I do not have adequate sun protection on. Since being diagnosed with lupus (or a lupus like mctd) I now understand how important it is to wear a high spf.

I was a bit sceptical when my rheumy suggested I should wear spf 50 all year round on exposed areas though.

In February we had some sunny days and I went out in the sunshine without and spf. The next day I felt a bit achy and my joints were sore. I did not get a rash though. There have been some other sunny days where I haven’t gone outside but I have been in the car or sat inside by a window, and I seem to get flarey symptoms the following day. But I’ve not had a rash.

I always thought that being photosensitive meant you get a rash in the sun. But does it also mean that simply being in the sun can trigger other lupus symptoms?

Since starting hydroxy I’ve been feeling a lot better. I’m four months into the treatment now and although things have been going well, I have started getting flarey symptoms again. I’m wondering if these are just spontaneous symptoms or are actually being triggered by the sun. What does photosensitivity actually mean?

18 Replies
oldestnewest

Hi Mrs G,

Photosensitivity has a clue in the name, literally meaning light sensitivity. Even for people without lupus it can manifest in different ways such as headaches, sore eyes or a rash. For people with Lupus rash exposure to light, especially strong sun, can trigger a flare. Personally I have been very lucky and rarely get the rash but my eyes really struggle with even a little sun so I'm wearing sun glasses a lot!

I would take your rheumy's advice and wear sun screen everyday. It won't do any harm, it's not just about protecting you on very sunny days but also from the UV on normal days X

Hi sorry to hear how the sunlight is effecting you and to reassure you how important it is to wear the sunblock. I was diagnosed at 17 with sun sensitivity after I went to the Drs in winter with a very bad sunburn which I didn’t think was possible and was told to wear the highest factor each and every day. I am sure I remember reading that when sunlight hits your skin it goes down to a very deep cellular level and for people with lupus that starts a reaction. In daylight even in bad weather the UV rays will get through it really doesn’t take a lot. I am having to get factor 65 from America amd factor 90 from Korea. I too always wear my sunglasses. Lupus is such a strange illness it really is and it effects us all so differently. I hope you start to feel much better soon and with all that sun cream on hopefully you can enjoy being outside in any weather. Have a nice day. Elena

Hi yes it does mean that the sun can cause an increase in symptoms. I’m sure it’s a chemical action in the skin that reacts to sunlight. Some medications make you more susceptible to sunlight too. Halogen bulb can also trigger a reaction , I had to change all the bulbs in my bathroom for led lights because I have a really strong reaction to uv rays. I would also like to point out that the dangers of being on or in the water and the effects of sunlight refracting off the water surface. The suns rays are also magnified through glass, so be aware when traveling in a car.I would also check your medication, light bulbs etc. I think mycophenate increases photosensitivity and the possibility of skin cancer. So just be aware of all the small things you don’t think about. Hope this helps xx

Thank you very much for your replies. I think I’m just struggling to get my had around the idea that a tiny bit of sun exposure in Winter, can trigger flarey symptoms for me personally. I have absolutely no sign of sun burn, a rash or anything else on my skin. But I will wear spf all year around as I know that’s a simple and effective thing to do.

The other thing that occurred to me is that I’ve recently started iron supplementation. I’m taking a high dose of ferrous fumarate once a day (315mg). Now I’m wondering if this might be the cause of this flareyness?

It’s just frustrating when things had been going really well and then I get a flare completely out of the blue :-(

The whole photosensitivity thing is quite complex..I would recommend that u have a look at lupusuk website and click on 'eclipse' where I found out about sensitivity to light. UV rays contain uva and uvb which affect the skin..one of them affects the outer layer ie sunburn n the other one affects the under the skin layers..sorry can't remember which is which but eclipse will tell u all u need to know!!

People who r light sensitive react to light in the blue end of the colour spectrum..we r much better with light on the infrared end so lightbulbs should be warm white LEDs rather than blue.

Sunscreen is a must..be careful around water n any reflective surfaces eg snow..there is a UV protective window film called dermaguard that will attach to any windows in the home or car..it's also advised to stay out of direct sunlight between 11am n 3pm but I find that I'm mainly confined to barracks when the sun's out!! Wear a hat n sunglasses as well.

Hydroxychloroquine can cause photosensitivity in some people.

And beware flourescent lighting which causes me to flare n leaves me feeling joint pain n just generally lousy..I have rashes all the time but I have cutaneous lupus.

It's tough when a flare threatens n I agree that it's disappointing n frustrating..just take each day as it comes n be careful not to overdo it!! Gentle cyber hug from me to u 🤗😎😽xx

Yes...the sun is not my friend...Before lupus I had no problem in the Sun. I actually get sicker, have more flares during the hot months...okay I am in Virginia, USA. The summers can get up to 100 degrees. I hibernate inside the house and dread even driving in the summer months. I use a sunscreen as high as possible and even have a sun screen in my make-up. I cover up, arms, feet, and ALWAYS wear a HAT....since lupus/meds took my hair out....no problem. I now have a short salt and pepper afro. No more chemicals and dyes for me. My advice is to COVER UP...light clothing and YES wear long sleeves in the summer. I am more vampirish (YES I made up that word)....after dusk. The key is to embrace the new you...and take care of yourself.

KayHimm
KayHimm in reply to Freddi1019

Are you familiar with the UV blocking umbrellas? I thought of how hard it must be for you in the Virginia heat. These umbrellas not only block UV but decrease temperature by ten degrees. Happy to help you locate them. K

Thank you this girl will start looking for it.

Thanks again.

KayHimm
KayHimm in reply to Freddi1019

Will get the information to you right away!

Thanks so much everyone for your replies. I am still learning a lot about lupus and light sensitivity, and you’ve been really helpful.

KayHimm
KayHimm in reply to 123MrsG

You can get them on Amazon: UV Protection umbrellas. If you want to know what will work best for you, just call the company. They are very helpful. The umbrellas are expensive but they are, in a sense, medically necessary. Hope this is helpful!

Hello

I have been wanting to reply to you but had to wait until I had sufficient time to do it properly.

I have SLE and I am photosenstive.

I tested positive for anti-RO antibodies when diagnosed in 2013.

I was recommended to wear SPF 50+ cream all of the time and to be careful in the sun.

I took this seriously and I now cover up very well if I am venturing outside. I have learnt that I am very sensitive. So I was wearing long sleeve tops and trousers. All year around. I bought rash vests with SPF 50+ in them, so that I knew my chest and back were properly protected. So basically the only parts of me exposed were hands, feet and face/head. But I realised that I had to apply the SPF 50+ sun cream (as prescribed by my GP - Ego Sun Sense - medical grade sun protection) to my feet and hands and face too. I went shopping one day and forgot to cover my hands. I got a lupus rash, that in turn got infected. My hands were cracked and bleeding and would not heal for 6/7 weeks. A hard lesson to learn, as a working mum then and having 3 kids - my hands were sore, painful and bleeding all the time.

Basically when I eventually saw a lupus expert, he told me that I was more photosensitive than I realised and I should be wearing a hat every time I went out as well. So, I now wear long trousers, long sleeved t-shirts or rash vests, a hat (I am about 95% complaint, but sometimes forget to grab it on my way out) - sandals are a rare thing even in summer - so now only really my face and hands are exposed to UV and they have cream on.

I have also realised that I not only get rashes in the sun but I feel unwell too. I don't cope with heat very well either. But I still go abroad on holiday with my family as I am determined that lupus wont dictate everything to me! And my family shouldn't miss out on holidays and adventures because of me.

However, I think that we are all different with our lupus symptoms. We all have a slightly different bag of symptoms, no two of us are exactly the same.

Some are not photo-sensitive at all - no skin reactions and UV doesn't make them unwell or have a flare.

Some get skin rashes but no other symptoms.

Some like me, get skin and flares, big or small.

Unfortunately, after a lupus diagnosis it can take a long time, to work out exactly what your version of lupus is and what symptoms you get, what your triggers are. It's trial and error. It's not an exact science. We are all on a broad spectrum and you have to work out where on that spectrum you are.

I am 5 years down the line now and on hydroxy, MMF and mepacrine, so these too help with the sun but I still have to be very careful. Now I know how photo-senstive I am, I would be silly not to take heed of the advice I have been given.

I have a selection of hats for summer and winter - bobble hats, beanies, fedoras and then floppy hats etc for the summer.

I still get the ego sun sense from the GP for my hands and feet etc. But I found a good facial cream that I buy from Amazon myself - as I find that the others make me look even whiter and more ghost like and they can be painful if you are sweating and they run into your eyes. Plus the one I use has a matte finish rather than making me shine.

I hope that I have helped, even if just a little. Happy to answer any questions you have and hope I've made sense.

Best wishes

Wendy

123MrsG
123MrsG in reply to Wendy39

Wendy, thank you very much for taking the time to reply with such a detailed answer.

I’m very new to all this and I’m still trying to work out what is helpful/unhelpful. I’ll be honest, I’m still not certain just how photosensitive I am.

I should say that in summer, before my diagnosis, I did get a rash if I was not adequately protected. So I know I am photosensitive. I just do not know to what degree I am photosensitive.

I will wear spf 50 on my face now when I am out and about because that’s just good sense. But I’m still not convinced I can flare from a small amount of light exposure in winter without having any rash or other skin reaction. In time I will learn what is a trigger and what is just coincidence I guess.

Can you be photosensitive without any skin reaction whatsoever?

Wendy39
Wendy39 in reply to 123MrsG

I am not sure if you can be photo-sensitive and not get any skin issues - only systemic issues?? I cannot thing of anyone I know who gets that. (I run a support group with 50 members) Generally a skin reaction and then feeling unwell. But there may be someone out there who can give you another answer on that.

Just be cautious with the sun until you know where you are.

I forgot to say that when I go to the beach (my children are 11, 13 & 15 and we live by the seaside) I use a beach tent made from SPF50+ fabric or a sun protection umbrella / parasol to cover my head etc, plus my hat.

Like I say, I have travelled abroad and go to the beach during the summer, as I want to lead as normal life as I can for my children. They don't want to be hiding inside all summer long because of me, so I have found ways of protecting myself as much as I can.

I can still feel shattered after a trip to the beach etc, and still need a nap when we get home or whatever, but it's all a balancing act with lupus and what is right for one might not be right for others.

Best wishes

Wendy

123MrsG
123MrsG in reply to Wendy39

Thank you again Wendy. Photosensitive sure does suck. A lot. Sounds like you have some really good strategies. I wish you all the best :-)

Hidden
Hidden in reply to Wendy39

Thanks.

It’s actually the invisible component of sunlight, uv rays that does the damage and can trigger all sorts of lupus symptoms.

Even people who are not lupus sufferers who have been exposed to huge amounts of sunshine in the past on reflection have said that one of their triggers was probably sunlight?

Some poor souls are so photosensitive that even on cloudy, dull days without protection they can get a lupus flare up. Hence sunblock, sunglasses, wide brimmed hat, long sleeved shirt and trousers rather than shorts but??...of course some will find this too restrictive but?

Sensible advice:

*Avoid the beach between 11am and 4pm and outdoors during those times

*Better still avoid beach like environments with scant protection. Many parasols are ineffective in sun protection

*Enjoy forest walks where there is lots of shade from trees 🌳 🌲! ..especially in the summer evenings

Today’s temperature 29/06/2019=>30°C🥵🥵🌞, hottest day in UK so far.

Regards to All.

Paul_Howard
Paul_HowardAdministrator

Hi 123MrsG,

We have an article on our website with loads of information and advice about light sensitivity which you may find helpful - lupusuk.org.uk/coping-with-...

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