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!

My daughter has it and I had it as a teenager and grew out of it. I'm 62 and sitting in the shade in Crete as I type with factor 50 on.
My daughter only really gets it abroad. She saw a dermatologist who gave her steroids and antihistamines which help a bit . She saw another dermatologist last week to discuss light therapy but was advised against as she doesn't get it in this country.(Scotland) And it's aging to the skin and increases your risk of skin cancers as you have to have 3 sessions a week for 3 months every year.
She suggested getting clothing that blocks uva and uvb. OP yours sounds quite severe so worth a referral.

My daughter's dermatologist said linen even thick still lets the rays through.

I have it, not as sever as how yours sounds though. I’ve been prescribed oral steroids during a bad reaction, and I’m having phototherapy at the hospital for it. They give you a micro dose of UV during the winter months to acclimatise your skin. I think it would help you. I’d go back to your GP and ask for a dermatology referral. I had to wait about 5 months from referral to treatment.

I also have a UV umbrella that helps day to day

I know! But as a child in the 80s, I didn't have a whole lot of choice in what I wore!

It does.

I had it for a few years - it started suddenly and after 5 or 6 years stopped just as suddenly. (My immune system is hyperactive so reacts in odd ways to all sorts of things.) I wore factor 50 on all exposed parts of my body in the winter. In the summer I took double antihistamines and steroid tablets whilst wearing long sleeves and wide leg trousers (which I thought looked terrible because I'm short and the steroids meant I gained weight - better than the pain from the rash though). On holiday I'd sit on the beach in the shade wearing a maxi skirt and cotton shirt to stay cool and covered but my favourite place was in the pool (in a t-shirt) wearing a hat and sunglasses with the rest of my body submerged in the cool water.

OP go and get a referral- medicine has come on and there are things available to help ease your suffering.

Yes I have this. It took ages to work out what it was. Doctor kept saying it must be an allergy to sun tan lotion etc. Then I met a dermalogist on holiday who recognised the rash (red, lumpy, itches like fury and if I scratch it, tiny blisters develop which are even itchier) and told me it was PLE. But when I mentioned it to the GP she said "oh yes, prickly heat". It definitely isn't prickly heat (which is from trapped sweat in concealed areas, PLE affects exposed skin.

I'm luckier than you in that I do gradually acclimatise to sunlight over the summer. But I'm on hols at the moment and it's the first strong sun my skin has seen this year. I've been really careful about covering up/using high factor sun screen (not least because I had a precancerous lump removed from my face last year) but I must have missed one ankle which is bright red, swollen, burning and itching - definitely not sunburn though.

Antihistamine cream helps a bit but if anyone else has found a remedy I am following with interest.

Yeah, linen is my go-to clothing material. Drives me crazy with steaming and ironing but it keeps you cool without ending up in tight, inappropriate clothing on hot days.

A few years ago I had a private course of UV skin exposure therapy. It just delayed the onset for me into later in the summer but I know a few people who go for yearly seasonal UV exposure and they are symptom free for most of the season.

Ugh, the 'prickly heat' dismissal!
.
That is really irksome!

If you have a dermatology department at your local hospital that has phototherapy, they may offer desensitizing treatment. It's a four week course, having treatment twice a week usually in spring before the summer. You have a very short exposure to uvb in a phototherapy cabinet (similar to a sunbed) which is literally seconds in time. It then gradually increases once your body gets used to the uvb. It is successful in as far as you may be able to expose yourself to small amounts of UV light. Please get referred to dermatology via your GP.

Sympathy - it's horrible!! My son had it as a toddler but thankfully grew out of it, and I get it on areas that aren't used to the sun, particularly my chest. My face and arms are thankfully unaffected, but after a miserable holiday a few years back when I wore a t-shirt with a slightly scooped neck on the first day and got the most awful itchy histamine rash that gradually spread all across my chest, shoulders and back and ruined the entire week, I basically just cover up now and make sure I plaster my neckline with SPF 50. I dread the summer every year.

Yes. I started to suffer from this when I turned 23.

It just happened out of the blue and as much as I love Summer, it does kind of spoil it somewhat.

Oddly enough my sister and my niece also suffer from it but theirs started when they turned 40.

Oh gosh, isn't it annoying?

I actually look like I have chicken pox and the spots last 2-3 weeks even though they only itch for a few days.

Me but only on my feet. I also have Raynaids and terrible reaction to cold on my face.

Thanks. I think I will I've never considered going back to the GP fir it. Silly really but I tend to just 'get on with stuff'!

I wonder if it's part of MCAS - mast cell activation syndrome?
Do any antihistamines help?

I think there are some fabrics that are designed to block uv light.
I don't have this reaction to sunlight myself but I do have to take antihistamines daily for random histamine spikes.

Loose cheesecloth type fabrics are quite cool and breezy in the sun or linen.
I have heat intolerance too and I know what you mean about covering up feeling uncomfortable.

Do you use a parasol /uv umbrella ?

https://www.amazon.co.uk/OAICIA-Windproof-Protection-Lightweight-Reinforced/dp/B09GKX5YJ8

Weirdly I had this when I was younger, it first triggered on a holiday to the Caribbean. Now I’m older, I can manage it by very very gradual introduction to the sunshine each year. So nowhere near as severe as you OP, but you have my utmost sympathies as it’s horrid.

Not PMLE, but I have light induced vasculitis so bleed attractively into my skin with light exposure. It hurts (not itchy) and makes me feel ill. I’ve had tests for porphyria it’s so bad, but the only solution is properly covering up so I look like an advert for sun protection. The specialist clothing (Solbari, Coolibar) is actually super light to wear and not sticky, but linen etc is nowhere near enough coverage for me, so I will layer specialist upf with linen or Broderie type fabrics to make the clothing look less medical. I also embrace my inner goth as black is much better in terms of light blocking.

I get it on my forearms on the first sight of the sun each year. It's been the same since I was a child.

It's horrible and itches unbearably for 2 weeks. After that it clears up and I'm OK til next year.

You have my sympathy OP.

I had this or something like it anyway when I was pregnant and breastfeeding. Seems to have gone away now, although I’m still very sensitive to the sun and careful to avoid exposure. I don’t come out in the awful itchy rash though any more thank god.

I invested in a couple of long sleeved UV protection tops, felt a bit of a loser wearing them to the pool and beach (we lived in a hot climate) but actually a lot more adults were wearing them and almost every single child. To be honest it’s so useful as you don’t need to worry about suncream on your back and shoulders. I had some of those UV sleeves but I wasn’t a fan of them. Handy for driving though.

I find the hardest thing is the British attitude to the sun. I know it’s because it’s not common for us to have sunny weather, but in the US no one would dream of sitting in the sun, shade all the way.

Theres a useful Facebook group with lots of tips. I found it helpful.

My son has this - every time we went on holiday he ‘burnt’ on his face, no matter how much SPF I’d put on / reapplied - we always had days in the room to give his ‘burnt’ skin a break.

we discovered some sun allergy sun cream a few years ago which really helps, I apply it for a few weeks before you go away but it really helps sometimes I’ve found it in TK Maxx

You might be able to get Xolair for it. I had a quick google and it seems it’s being used to treat it
i am on it for severe cholinergic urticaria and chronic spontaneous urticaria and it is life changing

I remember watching a tv documentary about a child with this condition ! It was many years ago but I never forgot it ad it was so sad & such an unusual condition.

PLE is completely different. It’s like an allergy to strong sunlight.

It's an allergy to UV light/radiation. I used to react anywhere that had UV light when I was younger! Not just passing through but anywhere that had it extensively throughout.

Yes I have this and it can be so debilitating. I was diagnosed around 18/19 and I’m late 30s now . I was initially fobbed off too . I can manage it pretty well . As long as I wear spf50 and not sit in the strong sun too long I’m usually ok. I tend to get it on my chest and arms . I have had bouts of it on my legs and scalp in the past couple of years though , but only when I’ve caught the sun there :( When I go to the GP to get my usual fexofenadine it’s pure luck what type of GP I’m going to get and if they understand the condition. Some are familiar and will happily prescribe the antihistamine and ask if I want to be referred for light therapy etc . Then you get some GPs who are not as familiar and will scoff at prescribing and try to give you just a cream which don’t help . I’m on a Facebook group for the condition and was shocked to discover loads of PMLE sufferers get sun cream on prescription . I didn’t realise this was a thing and have never been offered it by any GP.