Polymorphic Light Eruption. Anyone else?

[TheSunHasGotHisHatOnHipHipHipHooray]

Does anyone else have this?

I was diagnosed as a young child and it hasn't really got any better!

I'm 51 now and I've never met anyone else with it or even anyone who has heard of it.
The NHS website describes it essentially as a mild irritation but it's debilitating. It also suggests it lessens over the summer as your skin becomes acclimatised. Mine doesn't.

It's not as bad as when I was a child but that ls probably because I'm an adult and avoid being outside altogether if I can help it.

The GP said it's basically an allergy to UV light, which seems to be held up by the fact that, when I was younger, I'd react even in nightclubs or at attractions with UV light. We were asked to leave places when I was a child because it looked to management like I had measles.

Exposure to sun causes a severe stinging nettle type rash on any exposed parts of my skin. Raised white lumps that group together to cause blotchy patches that are intensely itchy and surrounded by redness that are also incredibly painful to touch. I get it on my face and hands still but not as severely as I used to or on less exposed parts of my body. I don't get it so much on my face now but get what I assume is angioderma - swelling on my face that's really unattractive and causes large swollen sagging eye bags essentially that extend half way down my cheeks 😭 Antihistamines can take the edge off the itching but not really the pain and not the reaction in the first place.

I cover myself in factor 70 suncream but can still have reactions in strong sun (like this weekend has been).

Unfortunately, covering up is also hard because I don't tolerate heat very well and don't regulate my body temperature well so I overheat quickly and become ill through that. Using suncream can also have the same effect. It's a pain.

I'm also quite photosensitive generally. I wear sunglasses all the time outdoors unless the sky is dark and overcast with grey clouds. Even a cloudy sky can be too bright and painful!

It's never early occurred to me to go back to the GP about it. When I was a child (late 70s/early 80s) they said there was nothing for it but to stay out of the sun - which is hard to do! Avoiding the middy sun (11am - 5pm) doesn't really help because sun outside that also cases a reaction and being at work makes it difficult too.

It just makes normal life quite hard from light spring through to summer. I have a really shady garden (intentionally) and can sit out under the trees but no one else wants to constantly chase complete shade so it makes normal socialising with others tricky too.

I just wondered if anyone else on here has this or what your symptoms are like because, like I say, I've never met anyone else with it!

Ive never heard of it and don't have it but just wanted to say it sounds hard and hope someone else comes along with useful experiences soon!

Yes. You can ask for steroids from GP. It helps with the itch and the dryness when the itchy part subsides. Have had it lifelong as does MIL.

Yes, had it my whole life as does dd2 though it has lessens as I aged and I take antihistamines when I know i need to be in high uv situations for extended periods

Wow! It's really nice just to hear from.others who have it!

I do remember the GP mentioning steroids but said they wouldn't prescribe and my mum was concerned about steroid cream so I've never really considered it.

I do take antihistamines but haven't really found them to be much use other than for the itching, which it takes the edge off.

Do you use over the counter ones or are they prescribed?

@TheSunHasGotHisHatOnHipHipHipHooray it is prescribed cream and it really takes the edge off. Sometimes, it itches so much, I can't sleep so it helps a lot. Sun cream can work, too, as a preventative but isn't a guarantee. Hit and miss and not sure if it's dependent on application or SPF/brand.

As someone who's fairly recently developed itchy dermatitis and is struggling 💐

Is it related to Xeroderma Pigmentosum? I once had neighbours whose two little children had this, they called them moon children. They couldn’t cope with any daylight at all. The mum pushed them around in a covered black box, poor kids.

I have it too. Very bad on my chest and arms. I also have a skin reaction to very cold weather!

It’s a little less severe as I’ve aged but blights my life every year. I use massive factor suncream that blocks UVA and UVB, and a very thin prophylactic cover of steroid on any exposed skin although I generally cover up…I chase shade, even crossing roads multiple times. People think I’m nuts but I don’t care if it saves me from the pain.

Yes...just on my face and neck. Started when I was 50. Still get it in heat 18 years later. Also mixed with rosacea.

Weirdly, just on my feet, and it has gotten better as I have gotten older.

so incredibly painful! Can make walking very very uncomfortable.

i live in Scotland, so I’m in the main ok. I have to be careful on holiday, and spend most of my time in the shade, or with sexy socks on.

I can’t imagine how it must be to have it everywhere.

No.

I have a family member with it but it sounds less severe than yours OP. He can’t stay in the sun for long periods or the allergy erupts but he seems to get away with a little here and there. also not as bad as he’s aged a bit

Yes both my sons get this on their ears and down their neck, every year between March and July. It looks so sore, we use antihistamines and steroid cream to help and then it just disappears until next year.

Yes! As soon as the sun comes out. It honestly is so depressing. I can’t enjoy the sun at all. I still go on holidays and stuff but can’t stay outdoors. I’ve had some success with uv proof sleeves for my arms but they look ridiculous. I get it anywhere exposed to the sun (and sometimes even through clothes). The nettle sting rash is a very good description. I hadn’t thought about that before. The itching is unreal. Awake from 3am this morning with it. My doctor doesn’t seem to know what to do about it (though by the time I manage to get an appt the rash is normally gone). Aghhhhhh

I used to get it. One year, I had to have a steroid spray, as my eyelids and lips swelled up with it. I found being careful with what sunscreen I used made the big difference. I also never bare my shoulders, wear a sun hat and cover up more than other people generally.

I get brachial radial pruritus instead now. I’ve been offered gabapentin or pregabalin for it. This year, I am wearing long sleeves to see if I can avoid it this Autumn. I may be hot, but it’s more bearable than the itching!

@TheSunHasGotHisHatOnHipHipHipHooray go back to your GP and ask for a referral to a dermatologist.

It's unreasonable that you should have to "just put up with it" and struggle on.

Ha yes, I recognise crossing the road for shade. People think you're just being dramatic 🙄

I've been wary of adding extra layers of anything (inc cream) because I overheat easily. My body struggles with any change in temperature. Even putting a facial moisturiser on can cause me to over heat and sweat. Except in very cold (winter) temperatures. I don't use body lotion for the same reason. Tbh, I'm not even sure anymore if its a genuine sensory sensitivity or whether it was triggered by always being so hot as a child and my body just goes into overdrive.

There is a photo of me on the beach in France when I was about 10 which, to me, represents what life was like - my parents angled a large parasol on the beach to create a shelter I'm sitting under it wearing jeans, a long sleeve t shirt, with a bandana round my neck and in the background there are children on a hot sunny beach wearing swimwear and playing in the sea. I spent all ay sitting under the bloody parasol. I was so hot and miserable but the suncream at the time wasn't effective enough or was thick like toothpaste.

Lifepoint not related but apparently part of the same group of conditions. It's an over reaction of the immune system to UV radiation. Xeroderma Pigmentosum is horrific really. I can't even imagine that.

Thank you. I think I should. I've never done so becaise the doctors just said there was nothing they could do but I forget that that was 40+ years ago and things have changed!

I've been so used to just getting on with it that it seemed a bit daft to go back!

I have it too, horrible lumps all over my hands, chest and arms. Didn't use to be so bad, but it's getting worse in my 30s. Weirdly it's not too bad in UK sun, but anywhere south of the English Channel and I'm really struggling - maybe it's something to do with the light being more directly overhead? Never seen a GP about it, just smother myself in high UK sunscreen and wear long sleeves. But it would be lovely to be able to enjoy a beach holiday without worrying about my skin so much.

Definitely ask for a referral OP - there have been so many advances in treatment for auto immune and allergies since you were a child. Well worth trying if you are suffering this much.

Yes, I last went outside during 'daytime' on Sunday and was covered and wearing factor 70.

I still have itchy lumps now from it.

My face had gone down by the end of yesterday!

Apparently, these a juvenile type that is more common in boys that particularly affects the ears! It is a juvenile form though so fingers crossed they'll grow out of it! 🤞🏻

Here too, mostly just my arms and chest (sometimes face) the itching drives me nuts and I've got scarring from scratching so much. I burnt a lot as a kid, I've always wondered if that caused it, parents never put suncream on me and were sun worshippers so shade, what shade?
Mines not an official diagnosis, I had a bad reaction in Spain a few years ago and that's what was suggested, Dr gave me a cream that was like smearing mashed potatoes up my arms 😝
Suncream doesn't seem to help much so I go for shade as much as possible.

It's currently on both hands for me as a result of being in the "shade" on Saturday. The shade doesn't protect me because I think the UV rays go through or something. Have also had it on my ears and neck. It's embarrassing because I can't hide my hands and I'm so worried people will think I have some kind of communicable disease but can't do anything for it so just carry on.

"Covering" doesn't need to be jeans and a T-shirt. You need loose but thick linen clothes.

Definitely go to the GP about it though. It's clearly impacting your quality of life.