Sun sensitivity

[jdavies38515]

Hi, I was wondering if some of you might be able to help me.

I'm not sure if I have sun sensitivity.

I certainly don't burn, come out in a rash or feel ill if I've been out and about in it.

But I'm not sure if my reaction is delayed. Does anyone else have a flare a week or so after? I think I'm finding I am. But I'm thinking it may be because I'm more active when it's nice and maybe I just over do it, get tired and that's more to do with what causes the flare.

Anyone please have any advice or maybe find the same?

Would be great to hear from you

Thanks.

[Fennella02]

Hi there. I would say that I am the same. The first proper sun of the year - generally April/May would result in a flare and this would contine at 3 week intervals for the entire summer. Worst of all would be the annual holiday to a hot country. This year, I seem to have escaped the sun/flare response - I'm not sure why as I'm still flaring but it's a different pattern.

I don't get rashes etc either xx

[jdavies38515 in reply to Fennella02]

Thanks Clare. That's very helpful, thank you. I thought sun sensitivity might be an 'all or nothing' thing. I was obviously hoping for the 'nothing'! I've had 2 flares recently so I've upped my Hydrox..for the next 6 weeks so fingers crossed it'll help. I think I'm still a little in denial of the whole thing.

[Paul_Howard Partner LUPUS UK]

Hi jdavies38515 ,

New immune responses can take over a week to develop so the effects of sunlight will not necessarily be on the same day.

If you would like more information and advice about sun sensitivity, you may want to have a look at our blog article here - lupusuk.org.uk/coping-with-...

[Ianrussell69]

If I'm in the sun without factor 50 and hat I start to feel very sluggish fatigue sets in befor I was told I was sun sensitive I was getting kidney uti infections at lest once a year ,I also burn fast and get (windburn a lot) don't know weather that is a thing but the wind make my skin very sore probably the only 48 yr old man who uses moisturiser every day !

[Miss-Power]

Hello ,

I have had the same problem, i was given antihistamine and a gel to apply at night for a week plus a prescribed protective sun cream, my DR said is a reaction with the medications.....i was ok after 5 days ....but i need to watch out the sun.

I would recommand you to see your gp ...

[Bruson234 in reply to Miss-Power]

If I stay too long in the sun (never on purpose), the next day, and for the next 5 or 6 days my skin feels itchy and sore. The best way to describe it is an itchy sore, even on unexposed areas. ¿Is that what you guys feel? No rash.

[caninecrazy]

hello, i have to avoid the strongest sunshine as much as possible, i wear suncream f50 on my face & arms, wear light colour cotton clothes and walk shadey route to work. ( i don't drive) i have to sit on the shadey side of the car/bus. i avoid midday sun as best i can. summer time isn't my friend as it makes all my conditions flare whereas my younger sister who also has lupus can sit in the sun! strange how it can affect us so differently x

[Wendy39]

Hello

Children are back at school today and so I am catching up on posts I had followed over the summer holidays but never had chance to reply properly.

My answer is yes.

Some of my reactions to the sun can be instant - if I am not covered by clothing or Factor 50+ sun cream I go very red and then a few hours later I might blister. My malar rash beocmes more prominent. My hands and feet, if not protected, will go very dry and crack and bleed sometimes.

Other reactions are slower.

I seem to be in a pattern where I flare September / October which seems to me to be the accumulative effect the sun has on me. I am aware of the sun and it's impact from March/April onwards and apparently I have read that that is common for SLE, DLE & SCLE sufferers who are photo-sensitive. Flares in early srping are common. Then for me at least, being out and about with my family, 3 children etc, by the end of the summer, it all takes it toll.

As for fatigue, It's hard to seperate the cause, sun exposure or just over doing it by being out and about.

I was told to wear a hat every time I went out, in April this year and I have tried really hard to keep this up. I don't like it but it does seem to have helped. Only time will tell if I flare now in the next few weeks or not. But I have also started a new medication in June - so hoping the new combination of meds and the hat may stop the pattern of flaring at the end of the summer.

I have posted myself about the measures I take in the sun. I wear sun protection tops - rash vests - that offer Factor 50+ protection built in. (if you want more info, please just ask). So I usually wear one of those tops, jeans or thick trousers - material the sun cannot shine through, sandals occasionally, but mostly trainers/Fit Flops boots, a hat, sunglasses, factor 50+ cream on my face/hands/feet. So there really isn't much of me exposed to the sun at all.

Of course I am lucky, that so far this seems to be enough for me and I still live a realtively normal life and get out and about. But I am very aware that some people are virtually house bound by their severe photo-sensitivity. It's like every thing else with lupus, there is a scale. It's finding out where abouts on the scale of photo-sensitivity you are. Trial and error.

I hope I've helped.

Best wishes

Wendy