To ask if there are any other suffers of Polymorphic Light Eruption on here?

[user1496146479]

Just that really! How do you manage with it? Sun holidays with kids have become a nightmare for me ! Any tips?

I have a long sleeved, high necked rash vest for swimming. It's deeply unattractive but means I have to worry a lot less.

Yep.

I don't get it every holiday, interestingly - factor 30 and staying in the shade during hottest part of day seems to help. Did two weeks in Florida in August without issue.

I've never done sun holidays! But since I erupt in a Scottish summer anyway, long sleeves, covered-up legs and feet.

Yes, me. I’ve had all kinds of nasty comments about it over the years. I found a brand of sun lotion (Ultrasun) and use a high factor in that so I’m always pale but even that doesn’t stop it if it’s very sunny.
I cover up/stay in shade/don’t do sun holidays and suffer all summer long if I get even the smallest exposure

Hat, shades, rash vest, factor 30 and stay in the shade. I don't go on sunny hols that include lots of sunbathing. I also don't go in the sea when the sun is out anymore as that triggers it too. If you have kids, just don't go anywhere really hot.

I'm now enigmatic, pale and interesting!

Thanks all. Have four children, the oldest three who adore the beach, pool, waterparks etc! Just like me as a child!! Holidays are stressful with this stupid thing!

Phototherapy, antihistamines, long-sleeved rash vests and swim-leggings, loose sun-opaque garments over vest and shorts, and a wide-brimmed hat.

Phototherapy has been life-changing for me.

@Dilbertian really?
Do you need to do it each year? How many sessions? Thanks

I’ve had this in the past. Do any of you also have eyes which are super sensitive to sunlight? I had to break out the sunnies last weekend when it was bright! My eyes are a very pale blue which probably explains the intolerance to much light.

You need to be referred by a consultant, so the first step is to ask your GP for a referral to Dermatology.

February/March is when you have phototherapy. It will take some months to get through the referral process, so now is a good time to get the ball rolling in expectation of treatment next year.

Have you tried anti-histamines? Dermatologist told me to take a one-a-day OTC anti-histamine like loratadine twice a day, ie morning and evening. This gets me safely through sunny British weather from about October to May, and, with the right protective clothing, usually got me through the British summer (before I started regular phototherapy).

Even though I already wear glasses, which cut down the amount of UV light reaching my eyes, I also need sunglasses much more than before I developed PLE. I have brown eyes.

I have had ple for nearly 30 years. I have been having puva for over 25 years. I have 2 sessions a week for 7 weeks every Feb and March. Tried having it later in Feb but the treatment didn't work as well those years. The treatment is OK but a bit of a drag as the tablets can make you feel queasy. But without the treatment I am housebound.

Top tips - dermaguard on my car. Its a uv film that goes on the inside of the windows and blocks uv. I used to get burnt in the car, esp in December and Jan when the sun is low. Now the car is a safe space, even in summer.
Also as pp said, antihistamines are great.
I find drinking alcohol makes it worse, so don't drink much on hot days.
I also have scarves that I take everywhere when its sunny so I can put over my head or neck or arms or whichever bit I can feel is getting to much sun.
I have a million gap hoodies as they don't let the sun through and if you get them roomy, can be worn in the summer to jeep the sun off.
Also try skin thickening, it means getting a little sun in your skin every day to build up resistance.
For holidays we go skiing!

What is PUVA?

Do you need to do it each year? How many sessions?

Yes, every year. I have 8 sessions across four weeks, but I don't know whether that's standard or tailored to me.

@Dilbertian
Thanks. Have my referral got.

Yep strong antihistamines help. But last year I discovered this and it was a bloody game changer, not even a hint of it www.sanareva.co.uk/product-isdin-fotoultra-solar-allergy-fusion-fluid-spf100-50ml.html

Yes and I think skin thickening works, I had it terribly in France in the July one year, went to Mauritius in the Nov and had only a slight hint of it. That’s all I can put it down to.

I’ve had it for 25+ years but finally feel like it’s mostly under control.

I don’t holiday in places where the sun is really intense (so Canary Islands, Greece, Algarve etc all out of the question). Balearics are just about manageable but it can depend on the intensity of UVA.

I always use a sun cream with high UVA rating rather than factor (no fewer than 5 stars) so can go as low as factor 15 if it’s not too high UVA rating, I’m careful to apply at least 15 mins before I go in the sun and regularly reapply. Usually I would used factor 20 but many lotions (such as Nivea, Ambre Solaris) simply do not work for me.

I wouldn’t be in intense sun for more than maybe 10 mins without cream on and I wouldn’t ever be in the sun between 12 and 3 on a hot day.

Beaches and water parks are a huge problem for me because I can’t reapply cream as easily. I tend to really suffer in those places which can be difficult with children. Starting the day with the 8 hour stuff can help but I’d also shower off in order to reapply. I’d choose to go to the beach at the end of the day when the sun is less intense and my body is more used to it. Water parks are easier in a way because you can keep reapplying without the sand issue.

I don’t find that antihistamines work at all and once it has arrived, that’s it for the whole summer so if it’s a hot day in the UK and I get it on the back of my hand for example, that will keep re-occurring until the weather breaks.

I also don’t find covering up helps after the fact, I need to be pre-emptive. I can kind of feel it coming which sounds weird but if I get the slightest sense of my skin being uncomfortable I’ll slap on more lotion and get out of the sun.

It can be miserable but really heightened awareness and preparation can make it more manageable. I say this as someone who spent most of one holiday inside a hotel room - it really does get easier once you learn to listen to your body.

Sorry, meant to say I can go low sun lotion factor if the UVA rating on that day isn’t too high. If it’s a high UVA rating then I’ll go for a high factor.

I used to have it terribly and had PUVA. Best advice I’ve had was from a Boots skin advisor. She suggested showering with alcohol and perfume free soap/shower gel before I went out in the sun. Only using perfume/alcohol free sun cream and deodorant when out. It made a massive difference to my skin.

I've found Ultrasound to work very well for me too. With that, antihistamines and wearing a rash vest, I managed a holiday in Portugal without any symptoms last year!

I found the Atlantic coast of Portugal to be perfect - Algarve too much!

I looked up PUVA. The phototherapy I have is different: UVB only, no tablet.

Sorry for long reply!

UVB only treatment is also called TL01. I had that when bf as the puva tablets are very strong and not worth risk in in breast milk.

It didn't work well for me which enabled them to determine my allergy is mainly uva, but does WORK well for some ple sufferers.

Usual treatment for puva is 2 x week for 4 weeks but as its also a treatment for psoriasis I once had it for longer to get rid of psoriasis and my ple was so much better that year.

So now they give me 7 weeks every year with a slower increase in dose each time than the normal regime. I'm glad my skin is better but I'm always so fed up of the 20 mile round trip and wearing dark glasses all day by the end of 7 weeks.

The reason I'm mentioning it is that if your PLE is severe a longer period of treatment with a slower increase in dose is something you could ask for.

If I win the lottery I'll go abroad every other week to top up my tan. If I kept a tan I wouldn't need puva every February.

I'mstuckherenow I know exactly what you mean! My skin tells me if it's had too much uv, it's hard to explain but a feeling of discomfort and a bit of panic, ie I've got to get to the shade NOW, makes people think I'm weird but saves me from accidentally getting covered in rashes.

As PP said, once you've got the reaction, that's it for the rest of that YEAR fir that patch of skin. So I'm super careful spring and early summer and get wild and careless in Sept/Oct as by then I don't care, skin is stronger and if i get it, it'll only be for a week or so.

Some people wonder if they've got ple or a heatrash. Heatrash will go after 3 or 4 days. PLE rashes stay a week to two weeks. Once you've got them, creams can make it worse, I find cold water the only thing that helps.

Also, finally, I find the heat can be an issue. Once I've had sun on my skin I need to keep my skin cool. No skinny jeans, no hot baths/showers, not hot shops (I'll often walk in and straight out of a shop in the summer if the ac is off, as my skin will prickle the minute I walk in). It lovely in October to start having hot baths and showers again.

I was told when diagnosed early 20s that I would grow out of it. I'm 51 and thought that meant about now, but the consultant said ah yes, people do grow out of it but you're a special case. Gutted.

I'm hoping someone invents a pill that creates melanin, I'd happily be their test person as this rules my life Feb to October!

Oh yes, the prickle that no-one else understands.

Yes it made all my holidays miserable for years, I tried every suncream pill etc nothing worked. My brother got married in Cuba and I was desperate to actually enjoy it for once. looking at forums online people recommended Uvistat suncream. Thought would be another one that did nothing. It is amazing I did not get the rash that holiday and have used it every one since and all the times it’s hot in the UK as well. Honestly would recommend trying it.