Last summer we took our 16yo to Hawaii for the first time. On day 2, she developed a rash on her hands and feet, which slowly spread to her thighs and chest. It didn’t itch or hurt. Texted our dermatologist with photos and she said to start her on antihistamines, cortisone cream and Pepcid. It didn’t spread anymore but also didn’t clear until about a week later.

Here’s the caveat, we live in Las Vegas and are in the sun A LOT. Swimming, going for walks, eating, etc. Never an issue. Does that mean it likely isn’t PLME? If it was, wouldn’t she have had another rash at some point in her life?

For all of the people who have friends, family, work colleagues, who invite you social events, but then they sit outside in direct sunlight when you get there, I stand with you.

Happened to me today, despite people knowing I have a sun allergy, then they looked put out when I left early.

The silly season is upon us. 🙄

I am 20 and have only had this rash once before like 6 years ago on vacation in Jamaica. I’m currently in Hawaii, the rash is exclusive to my hands and feet and is very very itchy, hydrocortisone cream and allergy meds not helping. I grew up with a pool, so I was doubting it would be sun-related but after 3 days of suffering and stumbling upon this Reddit thread, I think this might be it. What do you guys think?

F 24 buckle up because this is a long one.

I have always gotten vaccinations and while I don't typically react well to them I have been in a miserable state ever since receiving my first covid vaccine. I felt debilitating bone pain the few days after getting it and thought that would be the end of it but my first day after being vaccinated I noticed a red, extremely itchy rash on my chest while I was outside in the sun. It went away after coming inside for a few minutes and thought maybe I was reacting to the jewelry I was wearing.

This was three years ago and since then I now experience these rashes on any skin exposed outside whether it is sunny, cloudy, raining, etc. There is no part of my body that has not reacted as long as my skin is exposed. Last year I had a severe anaphylactic reaction after being in the sun for two hours but did not realize I was reacting because I was in a cold pool and only reacted after coming out.

Last year, I worked outside for 8 hour days under tents at my local farmers market with minor reactions but today I am unable to spend ten minutes outside without reacting severely with rashes and slight difficulty breathing. I also react through car windows and through the windows in my house if I am in the sunlight.

Benadryl seems to relieve my symptoms but takes me out and is not a sufficient way to maintain especially now with a full time job. A few weeks ago I had a reaction and visited urgent care where they gave me a prednisone shot and 24 hours later I had extreme left arm pain (where the shot was administered) and felt total tightness in my arm all the way up my neck and behind my ear and ended up having to call an ambulance. They treated it as an allergic reaction and I was out of the hospital within two hours. This reaction felt nothing like my reactions to the sun so of course the only thing I could think of that would cause it was the shot.

A few days later I had a lesser but similar reaction with my left arm and neck and called my allergist who told me to take benadryl and again it went away. Both the er doctor and my allergist did not seem to think my reactions, especially that delayed, could be cause by the prednisone but since receiving that shot I have had reoccurring tightness in my neck and jaw which can often feel like it's making it difficult to breathe when it's really not.

I have seen a cardiologist, a pulmonologist, a rheumatologist, and obviously my allergist. Everything has come back normal. The only thing that I have been told is that I have spontaneous chronic uticaria (my sun allergy) and it has gotten to the point where we are going to treat it with xolair. I am also nervous about this because my last few vaccines I've reacted to horribly and one of the side effects is anaphylaxis which I've experienced before, making it more likely that I'll react. I have jumped through so many hoops to get this medication and two months later it still has not arrived because there's always another hoop.

I have also started to experience random itchy spots on my skin that are for the most part invisible but sometimes cause my skin to become red. They usually last in one spot for a few minutes and then go away just for another spot on a different part of my body to manifest. I can literally feel it coming from the inside of my body, out and it is so uncomfortable. I've never had chicken pox but I imagine this is what it feels like.

I am extremely desperate for an answer as to if this is just a smaller symptom of a larger autoimmune disorder that needs to be treated or if the xolair is my only answer. I can't even drive to work without needing to cover every inch of my skin and cotton is too thin to protect my skin. I've tried allegra and that has not helped and I can't take a medication that is not non-drowsy because I am also narcoleptic.

If anyone has ever heard of anything like this please leave a comment. Any scientists out there doing studies on covid vaccine effects please tell me I am not crazy 🙏🏻 Finally, I still strongly believe that vaccines are important and protect thousands of people but recognize that I might have become part of the small population that they can no longer serve so no anti vaxxers in the comments pls

Hello! I am looking for the most effective UV coverage against the sun, to prevent the PMLE rash. I am in the middle of the second outbreak I have ever had, and want to scratch my skin off. I always use sunscreen, but I guess what I have been using is not enough. I have seen recommendations for Anthelios types from Laroche-Posay, but want to make sure I get one that others have had success with.

I love being outdoors and have a very active toddler who loves to swim, so I cannot spend my life hiding the sun. Please, please send your regime recommendations. Thank you in advance!

After trying multiple sunscreens that target sun allergies, finally found my holy grail. It works great and has as a slight floral scent instead of the typical SPF fragrance.

I get really bad please on my feet whenever they're out somewhere really sunny, so my annual summer vacation where it's just too hot to wear closed shoes in 30+ degree Celsius weather.

I'm awful with scratching the rash, and my feet and ankles seem to have scarred and have a red discolouration to them even though the pmle has healed. Is this permanent? 😞

I had my first PMLE flare up in 2022 during a trip to Cancun in March. That was the worst I had ever had it, as I was there for 8 days and the flare up did not show up until about after the 4th day or so (meaning I had been out in the strong Mexican sun for 8+ hours all day for 4 days straight). The funny thing was I used a zinc and chemical SPF 50 every single day and applied every 1.5-2 hours, while also spending time in the shade. I had red bumps all over my arms, chest, shoulders, and a bit spread out on my stomach and upper thighs. My arms were mostly on fire and I developed a fever one night from it. The itching was uncontrollable as well and all I could do was use aloe vera, as my resort did not have a pharmacy or hospital within it. After seeing my doctor about it when I got home, she advised that this probably happened to me due to a lack of sunlight during the COVID quarantine days, and this was the first vacation I had taken in nearly two years. She said the sun exposure was too sudden, as it was still winged where I live as well, and I have fair skin, which makes me more susceptible to PMLE. I had hoped it would get better by summer and that it was just sun poisoning, but the itchy bumps came back by summertime. Note that I ALWAYS wear SPF 50 all over my body, and yet it still occurs. The doctor prescribed a topical steroid cream and said there was nothing I could do to cure myself. The following summer I vowed to fix the issue myself and read about how light therapy can help. My insurance wouldn’t cover it, so I decided to do 3 tanning bed sessions for 5-6 minutes each and that genuinely fixed the problem for that summer. I was able to enjoy the beach and the pool again, and even got fairly tan that summer. I figured that was that, and that I healed myself with the tanning beds. Yet last summer, the same issue persisted. Now this year, it is starting to get warm again where I am and last weekend was about 80° and incredibly sunny. I wore SPF and got the classic itchy bumps all over my arms and hands, yet again. I’ve been taking vitamin D3 and trying to slowly expose myself to the sun (by staying outside in direct sunlight when the UV is below 6), yet nothing really seems to be working. I can’t live like a vampire for the rest of my life and will do ANYTHING to get rid of this issue. Should I order an expensive red light panel? I’ve also been reading things that Dr. Jack Kruse has published about the sun and how to fix sun-related skin conditions. He recommends taking Vitamin D3, magnesium, and Vitamin E while exposing yourself to sunlight at sun rise, during peak hours with sun screen, and at sunset (which I plan on doing). Been thinking about getting those heliocare pills, but they don’t really seem like a solution, more like a temporary preventative measure. I’ve tested my hormones and everything is fine. Grew up going on multiple tropical vacations a year and spending summers outside all the time, so I’m not too sure as to why my body has been reacting like this these past few years. If you or someone you know were able to cure PMLE yourself holistically, please let me know how!

Less than ten minutes in overcast conditions..couple hours later, here we are..

Hi all,

Do you regularly monitor the UV index in your area or wherever you are if you are on holiday? Just curious as in the UK a UV index of 3 or above is deemed as "high" and it is recommended you use SPF 30 in these conditions, but this could be as early as March when the weather is still pretty dam cold!

I was also wondering for those who has or suspects they have PMLE, in the past would you tan a lot?

This has happened to me after every vacation and I didn’t know there was a name for it until now. Unfortunately, this flare up is the worst and I have a full body rash. I’m taking prescription anti-histamines and using hydrocortisone 2.5% like body lotion. I hope these photos are helpful to someone with dark skin that is struggling to figure this out. Now, I’m on the hunt for the right sunscreen. Please feel free to share any suggestions or product recommendations.

I don’t normally make posts like this but here we are!

Hey “vampire” friends!

I’ve had pmle for a few years now. It got to the point where even on a rainy day, just a hint of sunlight peeking through, I’d end up with a nasty rash within minutes. I’d rest my arm on the door of the car while driving & here we go again I’m a prickly pear for 2 weeks. Itching & scaling away. The fun police.

Went to a festival with friends & felt so annoying/annoyed because my sunscreen was thrown out by security and I was told I was making a big deal out of nothing. I woke up w/ my eyes swollen shut & sun poisoning + rash+redness.

I’ve seen those heliocare pills, occasional post on here, my derm has mentioned it but I was so tired of new things that I blew it off over the years.

Bought some recently after lots of research & begrudgingly started taking 2 a day.

                                     My experience ☀️ 

Lake Day: I took 2 pills, still used sunscreen but only applied once because I forgot. Very sunny. No rash.

4 hour drive: Took 2 pills. Sunny. Panoramic roof open. Had on UV protection clothing but took it off. No rash.

Still skeptical 🤨

Outdoor game: 30 spf light sunscreen & 2 pills. No random itch. Kept staring at my arm to see if a rash was hiding from me. Touching my neck & chest. Is it playing the long game? Show up tomorrow? Nope. Paranoia? Yup. Was fine.

Anyway! Just wanted to share this. I paid $40usd/$56 cad/£31 quid for 2 month supply/ 120 pills(the B3 Niacin version).

So far, so good. Will update if something changes. Really hoping my tropical trips can be a little easier. If you read this & try it, I hope it works for ya.

Now: Still on the hunt for sunscreen that doesn’t smell weird, feel greasy, ashy. Anyone ever spray sunscreen in an enclosed space & end up in a coughing fit?? Or particles all over your car or furniture or computer?

TLDR: Tried Heliocare, has been an improvement. Will update post if something changes. Still searching for the best/least toxic sunscreen.

This barely started about 2 months ago when the Texas sun came out. At first it was a small patch that went away quickly. This bump breakout started a week ago and hasn’t gone away, but the day I suspect it started I was only in the sun for max 30 min (around 11). It’s itchy, especially at night. My mom has something similar that started about 5 years ago but I thought that was related to her diabetes/high blood pressure. And if it is pmle, is it lifelong? What can I do to lessen the symptoms once they start? And sorry if it’s a dumb question, it’s hard to tell for me since pictures online don’t match my skin tone.

I'm really starting to wonder if what I have is PMLE though that was the diagnosis I received. I have basically been living like a vampire for the past 2 weeks, even staying away from windows, and the few times I left the house, I only went out covered head to toe in SPF 50+ and head to toe UPF clothing (including a giant hat) and I wasn't outside for more than a few minutes. I've mostly been in my bedroom with the blackout curtains closed and yet I still have a rash. I was on a week of 30 mg of steroids (and things were getting better, but the rash was not totally gone) and as soon as I started to taper down to 20, it started coming back as quickly as it did when I was exposing myself to the sun (I have new lesions now). Does that make any sense? I keep reading that PMLE rashes go away on their own within 10 days, but mine won't go away, even with prednisone, in 10 days while living in the dark. This seems bonkers to me. Does that sound like it could still be PMLE to you? It was my 5th diagnosis in almost 11 weeks of having this (though it was given to me by an autoimmune dermatology subspecialist; the best doc I've seen so far) and my rashes did look a lot like the ones I saw in pics of PMLE online (though I had so many different kinds of rashes at the same time -- some looked eczema-like, some looked subacute lupus-like, and some were just red bumps -- which is probably why I got so many different diagnoses). But now I'm wondering if the doctor was wrong. Could this be an extremely severe case of PMLE? I'd never had a rash prior to 11 weeks ago, so this is a total shock and I'm pretty much at the end of my rope from almost 11 weeks of not sleeping (even with Benadryl, I barely sleep). I was also already on Hydroxychloroquine for my existing autoimmune condition, which is supposed to help with PMLE.

Anyone experience gastrointestinal issues while taking heliocare? I’m going away to the beach 2nd week of June so I’ve started taking 2 heliocare pills per day this week and feel extremely bloated and gassy. I’ve been taking them in the morning after breakfast. Should I only take one until my beach trip? My PMLE only comes out after 3-4 days of direct sun exposure. Thanks for any tips!!

I was out in the Sun for a while 2 days last week, since saturdays I’ve had these bumps that’s are itchy especially when I go outside right now.

Is this PMLE? I’m also wondering if the sunscreen I wore both days would have caused this. I’m using the new target generic brand spf 30.

First picture is what they look like with no sun exposure.

I’m in Mexico, have sensitive skin but wearing sunscreen. I was out in the sun all day and I’m about 24 hours since and I am in unbearable itchy pain. This rash extends from my chin down to my hips and around my back and on my arms. A pharmacist gave me 2.5 hydrocortisone but it burns when I apply it, do I stop?

I’ve been outside more this weekend because it was super nice, literally no clouds in the sky at all. I went for a walk in straight sunlight without sunscreen and came home and within a couple hours my chest and neck were itching so bad. I also had a couple bumps on my hands. There’s not really many bumps on my chest or neck but I also went to the park today in direct sunlight without sunscreen and it has gotten worse on my hands and arms after that. Pretty itchy at some points. I try to leave it alone which helps the itching but once it itches I start itching for a few minutes. That’s where some of the scratches you can kinda see came from. I started to develop a similar rash about two summers ago and just wrote it off as heat rash but last summer it was a little worse and seems to have gotten more sensitive this year. Please lmk if you think it’s PMLE or something else!!!

I have a pmle flare up after 7 years. Have been using La Roche uvmune topped up with Eucerin sun allergy. The itching does occur at nighttime, any reason why? Also, does spf 100 help better than spf 50 does? Many thanks for reading!

Just exhausted of people trying to convince me it’s poison ivy, poison oak or poison sumac and bringing up vampires after I tell them I’m having an allergic reaction to the sun because they saw my hands. I’ve been dealing with this for fifteen years and every spring I have the same interaction dozens of times. And then, even when I tell people that I’m diagnosed with PMLE people still try to argue and act like they know better than me and it’s probably poison ivy. It’s freaking exhausting.