Polymorphic Light Eruption. Anyone else?

Huge sympathies OP. I'm in the middle of my first bad bout of this. Had it on my hands rarely over the last year and didn't know what it was but currently on holiday and got it every single body part that was sun exposed on the first day. I'm miserable and feel very ugly and uncomfortable!

Not sure if mine's triggered by a current course of antibiotics, general age, or HRT, as I've only noticed these hand spots since taking HRT.

I have found some relief from my son's eczema moisturiser (double base) that we happen to have with us.

Good luck at the Drs OP ❤️

This also sounds extremely similar to the condition Solar Urticaria. It might be worth reading the following:
www.bad.org.uk/pils/solar-urticaria

I'm fair skinned and have always burnt very easily, but PMLE started around menopause. The first time it happened was during a holiday in May. I had it on my arms, chest, legs,feet face and even on my scalp. It was very blistery and itchy and absolute hell. Over the years I've learnt that at if I go out in spring early summer when it's sunny I smoother in sun block wear a hat and cover up, if it's very hot loose very thin blouse. I also take preventative over the counter anti histamines if I know I'm going to be exposed. I have found that if I am really careful early in the season I can relax a little later in the year. I don't very often get bad out breaks now. I did however go into the garden a couple of days ago just to check if I had some basket liners, I got distracted and deadheaded some plants I was out for 15-20 minutes and my arms are causing grief now. I also get a itchy burning redness on my hands if they get too cold, especially if they are wet too. Its a pain when sorting out the freezer!

Yes! I do. It’s horrible.
OP I’ve found Ultrasun sun cream really helps. As goes the after sun. It’s expensive but I can go outside now!

Yes! I had an episode during a holiday to Portugal a few years ago. My feet and legs were horrendous. Now I wear trousers and long dresses to mostly avoid eruptions.

Yes, I have it too. I mostly get it on my upper chest, neck and arms. Not really on my face, though that gets sunburned easily. Your description of the photo taken in France made me smile. I have a photo taken in the US, when I was in my 30s. A friend and I were on the beach, she’s sunbathing in a swimsuit. Because there was no shade on the beach, I am lying fully clothed with a big beach towel covering me completely, including my face. She was laughing, saying I looked like a dead body. (Back in the hotel that night, she was terribly sunburned and very sore indeed, so no regrets on my part!)

I had PUPP severely when pregnant and that triggered something so it recurred every year after that as the UV reaction.
steroid tablets worked well, but they are strong so can only have them short term.
it is utterly miserable so I really sympathise!

I saw a locum GP once who prescribed an alternative to the steroids…it’s called Montelukast.
he said it is usually prescribed for asthma but some evidence it can help with other persistent allergy type autoimmune conditions.

it was an absolute game changer! I took a tablet overnight for a few days and it just made the rash disappear (I say rash, mine was hives that were so swollen my skin would weep).
more amazingly, it seemed to actually reset my system, I’ve never had it since.
I still get prickly heat occasionally but in what I would consider a normal way, just an itchy rash as opposed to the swelling of entire parts of my body.

link below but defo discuss with your GP
https://www.nhs.uk/medicines/montelukast/about-montelukast/

I get this and I’ve never met anyone else who does, despite the NHS website sayings it’s really quite common. Sympathies to all. I actually feel a bit guilty/reassured as mine is so much milder than other people here - it’s typically triggered on my 1st major exposure to sunshine of the year and then dampens down on subsequent occasions. I get welts like hives on my upper arms, chest and neck - bright red, burning hot and insanely itchy. I was prescribed fexfenodine (which I now just get OTC) and a strongish hydrocortisone cream - (Betnovate), and using them together and aggressively worked pretty well (the fexfen dosage for PLE is higher than for hayfever, iirc). I’m a bit of a sun dodger by inclination anyway, but like others tend to lurk, well covered under an umbrella if we are on a sunny holiday.

Commiserations to those affected, it’s really miserable.

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.

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.

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

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

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.

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.

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.

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.

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

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

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.

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.

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.

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.