Polymorphic Light Eruption. Anyone else?

I’ve had this since I was 11 so well over 30 years. Peaked in my teens and twenties and has been mostly manageable since then by using high UVA/UVB sunscreen and being vigilant. Boots Soltan is the only thing that currently works. Doesn’t have to be factor 50, can go down to 15 for a short while, but has to be the right sort or it flares up. I find that once I have a flare up, that’s it for the rest of the year until Winter.

People always say ‘stay in the shade’ or ‘wear clothing that covers it’ but once it has come, it is so damned uncomfortable that any clothing irritates it and shade doesn’t relieve it. Nor does calamine lotion, antihistamines etc.

Can you feel it starting OP? I can be in the sun but as soon as I feel it coming I get the hell out of the sun, inside or full shade. I then have keep that bit out of the sun for a few days. If I don’t catch it in time, it is extremely sore and swollen and I’m then more liable to get it in other areas.

The beach is the worst place for me, I always get it there no matter what SPF I wear or how often I reapply. If I swim I have to dry immediately so I can reapply.

Whilst it has died down through careful SPF and being mindful of the intensity of the sun, it’s recently starting coming up on my cheeks, which is just lovely.

My Dad didn’t develop it until he was in his 60s. Having moaned at me for complaining when I got it as a child, he seems more sympathetic now!

It’s horrible. And the prickly heat comments are the worst. Hope all my fellow sufferers are surviving the heat wave if they are in it.

That sounds horrendous OP. In all seriousness, have you considered moving? Somewhere like Shetland with very few sunny days and generally very cool temperatures?

One of puberty's 'blessings' for me! I've spent the majority of my life shaded or covered up, and have now also resorted to UV-blocking film on the windows at home. It's so depressing when I think that, as a child, I spent all my time outside and had a lovely tan - now I'm permanently ultra-white and Vitamin D deficient.

Loads of sympathy, and no helpful advice (that you haven't already heard), from a fellow sufferer 💐

Used to have it in my 30s/40s on my chest area when I went on hols abroad. 63 now and not had it for past 20 years. Probably cover up more and I don’t sit in the sun

Wow. I took the same antibiotic just before all my problems began, many many years ago now! Didn’t realise there was a connection.

Yes. It worsens as you get older. I find it fades away after a couple of weeks exposure every spring/summer.

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.

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

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 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.

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!

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

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

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.

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!

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.

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

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.

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.

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

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.

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!