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!

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

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

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

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 💐

Interesting how many people saying theirs is hormones linked and lessened after menopause!

Unfortunately, what prompted me to post is that mine seems to have become a bit worse. Especially the facial swelling. It looked horrific 😭 I'm also 51 and so perimenopausal (not menopausal yet). Maybe this will be it's last hurrah 🤞🏻

I've had it since early childhood. I've managed it mostly by sitting in the shade, in cool rooms indoors but I'm dolefinitepy going to see if I can get a dermatology referral.after this thread.

In rwrms of suncream, I've tried loads akd obviously always check the spf and star ratings.

I don't really recognise I've the 'mental load' that is often talked about in relation to every day life stuff but it's constant from spring to late autumn wrt this. I don't travel because of it because I feel I just can't take the risk.

It's interesting to hear other people's experiences and how some people have managed it.

Thanks for sharing! 🌞

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

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.

I can feel it starting. It tingles.

But I'm a bit like you, once it's started that's it amd, as you say, all clothing irritates it once it's started.

As I said earlier, I don't tolerate the heat well and cam feel myself overheating so covering up isn't really a practical solution, unfortunately.

Many times! 😄