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!

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.

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/

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!)

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 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!

Thanks for all the suggestions and solidarity!!

I'm definitely going to book an appointment with the GP and see how I get on.

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!

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

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 ❤️

Some experience that may help if it is solar urticaria.

DD has had solar urticaria since she was a young teen (and had plenty of research and newspaper articles about her). She even has reactions to fluorescent lighting (which emit UV); it was the sunburn markings from her light (an energy saver bulb) on the back of her neck whilst she was doing her homework one night in the middle of winter that clued us in to the underlying cause of her continuous rashes.

Her clothing covers her from toe, always using umbrellas on top of full cover (but loose) clothing, she’s allergic to most sunscreens so it’s the only method to keep her skin protected.

We have UV film across windows, and all of our lights and lamps have been LED since around 2011 (thank goodness the cost is so much lower now lol)!

Lots of steroids and antihistamines over the years, and has chronically low Vitamin D which she takes regular top up courses for.

Now she’s an adult, she works for the NHS working only night shifts!

DD does venture out and about and has a pretty full life on top of work, but just like any allergy, once diagnosed its about avoidance of the allergen as best as possible.

Just fyi, she was under the dermo and allergy teams across the Royal Free and St. Thomas’s who were amazing. Bear in mind she’s nearly 30 now so I can’t vouch that’s the best pathway to go down for diagnosis any more!

My DDs both have PLE. In particular on their ears on the first sunny day of the year. Hats and sunblock plus antihistamines are the only things that work. Stinging nettle blisters are a good description of it.

Yes! I had it, couldn’t get doctors to take it seriously but self diagnosed and self medicated. And the thing that worked was a fern extract marketed under the name Heliocare https://cantabrialabs.co.uk/products/heliocare-oral-capsules?srsltid=AfmBOopwDatZq7MavaGoBzbo8f7YFMFQXJ2LfCwFdDcfs0hpiEyG7QVV. If I remember correctly you have to take it consistently for a few weeks / months but it made a massive difference for me. It basically went away after a few years and now I just have to be a bit careful at the start of summer. Try it, seriously

DD gets this on her feet and hands when we go abroad. She lives for the pool so it’s hard work trying to keep her out of the sun. It’s never occurred to me to go to the GP about it as it’s normally clearing up when we get home.
We fly on Friday and I’ve already stocked up on Piriton and antihistamine cream. If anyone else has any other suggestions I’d be grateful. Sadly it’s too late to get the sun cream that was mentioned up thread.

I have this. It's currently active on my hands, forearms, forehead and after finding out the hard (and itchy) way, it's now active on my feet in exactly the pattern of the shoes I was wearing. Any bright sunlight on exposed skin sets it off and I have also had it (re)activate through the window of a bus. The only thing that stops it is covering up. Properly. Linen isn't enough to do the job but weirdly enough a cheap temu cardigan is surprisingly effective. Solar sleeves also work really well. DH thinks I should just buy a burqua and be done with it.

Someone else mentioned MCAS. I also have this along with some other autoimmune stuff so I am not surprised in the slightest. FML and all of that.

Another sufferer here, and yes, a flare started at the WE. In addition to the itchy rash, I get facial swelling which is particularly noticeable round the eyes, which swell from the nose outwards and it makes me look like an alien. My GP prescribes a pack of prednisone for me to keep at home. I start a course at the start of the flare every spring. Its always the first proper, bright spell and usually takes 2-3 days of bright weather to really start if off. Definitely go to the GP, OP, from what you've said I'd have thought they would just prescribe what you need

A lady at our slimming world group has this. She’s a lovely lady and has a great dermatologist by the sounds of it. You sometimes see her wrapped up head to toe but she doesn’t take any shit off anyone for her appearance and has adapted well.
I will say I’m glad she explained to everyone what it was as no one batted an eyelid thereafter.

I get this on my chest but it doesn’t sound as bad as yours, OP. It’s usually when I’m exposed to the first sun of the year and it can be prevented by wearing sun cream (factor 50 or even 30). Awful though as it lasts over a week if I do get it, and is very itchy/painful. You have my sympathies!

Oh yes, and worth checking that the sunscreen you're using is fully protective. You need to look for ones with 5 stars. The SPF relates to UV B protection, against sunburn, but won't stop your light reaction even at SPF50. For Polymorphic Light Eruption, it's actually more important to max out the UV A protection. The ones I trust are Anthelios, Vichy, and LaRoche Posay, all 5 stars, and this year I'm having success with a Korean sunscreen called Beauty of Joseon.

Had it years ago when I went on the contraceptive pill as oestrogen or synthetic oestrogen makes it worse, and sadly was put on trimethoprin antibiotics at the same time (that also can trigger it).
If it gives you any hope as your hormones change in menopause it may get better

Yes I have it. I just use the hardening method before going on holiday - slow controlled exposure and then lots of shade and sunscreen when on holiday. Works for me

I had this very badly all my life. Exposure to sun, even in shade resulted in severe blistering and a flu like reaction, I would be unable to move, just lying in a darkened room for days. I was diagnosed, and got sunblock on prescription for years. But it was oestrogen linked and cleared up after menopause. I can now be in the sun and I’ve actually got a very slight tan today!

I have it! Mainly my chest and arms - untreated I get rashes, itching
, burning and swelling around my joints. Very painful. Went to see a dermatologist and prescribed short courses of predisalone when I need them. It means I can be somewhere hot (under an umberella or in the water
) and be OK. I don't lie in direct sunlight and I always wear sensitive factor 50 sun protection (fragrance free etc). Definitely worth paying to see a dermatologist if you can.

Yes I get it but thankfully I only get it when I've been in the sun over a few hours. Its awful- it itches like fuck and then when you itch it gets inflamed and sore.

I'm sorry OP- I've never had in the shade though that sounds awful. It really pisses me off when people go on about how "good" the sun is for you - yeah, try having this for even 10 mins and you wont be saying that!

I tried this years ago and remember it helped me a lot

Yes. It’s an awful thing. UVB light treatment for a couple of years prior to summertime really helped. Via dermatologist. Also recommended nicinamide as a supplement. This seems to have helped too. Get a derm referral.