Living With PMLE And Tips to Prevent It (Spoiler Alert: It Sucks!)

 PLE Polymorphous Light Eruptions

Spring is arriving!  For me, that means I have to be extra careful with sun exposure because I have an acquired sensitivity to the sun called polymorphous light eruption (PMLE or PLE).  It’s considered an allergy to the sun!  How sad is that for someone living in Phoenix, Arizona?  Considering I grew up in Southern California and was constantly at the beach, it’s weird but now I can get a bad rash from even a small amount of sun exposure.  This developed later in life and took me years to find out what was actually causing this strange rash.  If you are one of those people that have a sensitivity to the sun, you know the misery this rash can cause!  The itch is intolerable!

Anyhow, I thought I’d talk about it and write a blog post because as sunny days emerge with the coming of spring, so does this rash.  And let me tell you, it completely sucks!  So, here’s a bit of information and some tips I can offer after struggling with this over the past 15 years.

Let me put a disclaimer out there though!  I am not a doctor and nothing I say should be construed as medical advice.  I’m just sharing my personal experiences.  If you think you have PMLE, you need to get advice from a doctor on the best course of treatment.

What is Polymorphous Light Eruption (PMLE)?

Well, in the simplest of terms, it’s a sun rash and it’s a tricky one because it can appear within 30 minutes of UV exposure or a few days later.  For me, it’s usually about 6-8 hours and then the symptoms show up.  The areas that are most likely to develop the rash are those that are not commonly exposed to the sun such as your neck, chest, shoulders, lower legs, and feet.  As the weather gets warmer, you begin to expose areas that are usually covered in the fall and winter.  And then…. the rash suddenly shows up.

For most people, the rash manifests itself the same way but it can appear differently on different people (thus the “polymorphous” term in the name of the condition).  As I type this, I have a big red patch of skin on my chest from getting exposure after doing about 20 minutes of gardening.  Lucky me!   Sometimes I will also develop red plaques.  People may get red papules, blisters, or even intensely itchy skin without visible signs of redness.  I’m sure many people out there have sat around wondering what the hell is going on!  PMLE occurs in a myriad of forms that may look like other skin conditions.  If you are trying to match up what you are experiencing by a photo someone else posted on the internet, it’s really not possible to do.  It’s important to see a doctor if you want to properly assess what’s happening with your skin and what to do to get relief.

I was surprised to read that doctors estimate between 10% and 20% of the population may be susceptible to PMLE.  I thought I was alone but this acquired condition is more common than I thought.  I just wish it was understood better and there was a way to better calm the skin skin once it flares up.  For me, it can take up to 2 weeks for my skin to return to normal.  Fun times!

What Causes PMLE?

Unfortunately, I’ve never been able to find an exact cause from a reliable source for PMLE.  Different doctors I have seen can’t offer an explanation for it either.  I experienced it for the first time about 15 years ago in Cancun, Mexico and I had no idea it was from sun exposure.  It wasn’t everywhere that was exposed to the sun so I didn’t think that had anything to do with it.  I knew one thing, it itched so bad it would wake me up and it ruined my vacation.

Researchers say PMLE happens when light generates an immune system response in your skin.  It is known that PMLE can be genetic and tobacco can make the problem worse.  But not enough is known for those of us that suffer from it!  The best information I’ve come across is what I’ve read from the Mayo Clinic stating PMLE is hypersensitivity to the sun’s UV rays.

Both types of UV rays cause PMLE, although UVA rays account for up to 90% of cases.  This is a picture from the Mayo Clinic of a PMLE rash but yours may or may not look like this.  I have experienced a rash that looks very similar to this and I cannot even describe the itching.  It can be really stressful and depressing when it happens. The itching is so bad, there’s no way to get your mind off it.  It dominates your thoughts and it feels like a thousand little bugs crawling on your skin with no way to stop them!  I tried not to itch the rash and I’ve itched it so much that I’ve caused an infection.  It’s a complete nightmare and  the best things is to try and avoid letting it happen.

PMLE is not the same as Heat rash which occurs on areas of skin that are not exposed to the sun.  PMLE is your skin reacting abnormally to sun exposure.  It’s not a sunburn either and it’s different than a reaction you may have due to the skin being sensitive from something that was applied to it or a medication that you might be taking.  Considering all these factors from sun and heat that can cause a rash, plus the length of time it can take to show up (minutes or days), it’s definitely not easy to diagnose.  And then to top if off, it may look different on different people so PMLE is really hard to pinpoint!  Therefore, take the time to visit the doctor and get examined so you know what you are actually dealing with.

Do You Think You Have PMLE?

For most people with PMLE, they have an initial reaction after their first time in the sun usually in the spring or early summer.  Skin that was protected by clothing is exposed and the reaction shows up on the newly exposed skin.  It’s said that with additional exposure, you may be able to tolerate more sunlight without having a PMLE reaction.  Living in Arizona, I would say this has been my experience.  My arms are exposed nearly all year and I don’t ever have a reaction on my arms but once I expose more of my chest or shoulders in the spring, I get the rash.  Even when I use sunscreen, I can get the rash because some UV light will get past sunscreen.

There’s no general cure for PMLE.  I’ve tried every over the counter product known to man and nothing stops the itching.  From natural remedies to expensive over the counter creams, I’ve traveled the entire road and they just don’t work for me.  I have found very few Corticosteroid creams help as well.  For some people, the feedback using mild Corticosteroid creams is great like a prescription hydrocortisone.  For me, even the strongest available doesn’t meet my expectations.  I’ve been prescribed Clobetasol and that’s the end of the line.  It helps me but it doesn’t stop my itching.  Doctors are amazed that doesn’t do it for me.  Everyone’s body is very different so it’s trial and error with a good doctor to find what may help you.  Another prescription that has offered me some relief from itching is called Alevicyn Antipruritic.  The spray gel has helped relieve itching for me.  This is something you can ask your doctor about as it requires a prescription.

It is also said oral antihistamines can also help with itching, as can oral steroids and hydroxycloroquine tablets. Well, I’ve also tried every antihistamine and doubled doses and nope, that doesn’t do it for me either!  I’ve recently read that  doctors may treat PMLE with immune-suppressing drugs such as azathioprine.  I haven’t tried immune-suppressing drugs but I’m currently considering asking about this.  I’d love to know if anyone has tried this and if it helped?   Another thing that helps me that isn’t good for the skin (and is probably dangerous because of the risk of burning) is intense heat (like from a blow dryer).  I talked about this here.  It’s really weird but for me the extreme heat stops the itching for a few hours.  Cold compresses and ice packs have also helped relieve the itch for me.

If you suffer from PMLE, you know the desperation to get the itching to stop!  A constant itching sensation that doesn’t stop for days is depressing, anxiety invoking, and it can leave you feeling hopeless.  When it finally goes away (and it will eventually stop itching), it’s an incredible feeling of relief.  These are the types of things I wish people talked about more because while this condition isn’t life threatening, it can certainly affect your life and everyone around you as you become obsessed with trying to feel better.  Often these feelings are dismissed by those who are close to you and not taken seriously.  But they are serious! For someone who is affected by this and those around you don’t understand what you are feeling, it makes it that much worse.  But believe me, there are people out there who do understand the emotional impact this has and you aren’t alone!

Tips To Avoid Suffering From PMLE

The best thing you can do for yourself is avoid the PMLE rash in the first place.  That means taking the most aggressive sun safety precautions including protective clothing, using broad-spectrum sunscreen, and staying out of the sun.  Since sunscreen can’t stop 100% of the UV rays from getting through to your skin, the only way to really avoid this is to avoid the sun.  I know that’s a complete drag but I spent 20 minutes in the sun and didn’t even think about it and I was zapped!  My first rash with the changing weather.  I had my guard down!

There is some research that shows nutritional supplements can help PMLE.  I can’t say whether they are effective as I’m not willing to test it out!  However, Nicotinamide, or vitamin B3, vitamin E, and beta-carotene Vitamin D supplements have been shown to help.  There is a  supplement available called Sunsafe RX formulated specifically for PMLE.  I haven’t tried it but I was going to pick up a bottle as I figured it couldn’t hurt!  I definitely wouldn’t increase my exposure in hopes of a supplement protecting me.  I would just use it as another line of defense like sunscreen in hope that I might avoid an incident from brief exposure.

Finally, there is highly reliable research that has shown Alpha-Glucosyl-Rutin is effective in helping to prevent PMLE.  There is a company called Shirudo who sells the product but the effective ingredient is not available in any products in the US.  Personally, I don’t like the way Shirudo has marketed their product.  It feels scammy to me.  I wouldn’t purchase their product but Eucerin has a product that contains the ingredient.  It must purchased on line and it combines the AGR with a sunscreen.  As AGR provides no sun protection.  It must be used in conjunction with a SPF product.  It is said to support the skin´s own protection system against UVA induced free radicals to help protect against sun allergies.  Here is the link to the Eucerin Sun Allergy product to consider and they also have a sun after care product in their line. I have not tried this yet so I can’t comment on the effectiveness.  I have seen several research articles that show it is successful for some people.

Do you suffer from PMLE?  If you do, have you found anything that helps avoid getting the rash or offers relief once it happens?  Do you feel like no one understands how miserable the situation is?

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63 thoughts on “Living With PMLE And Tips to Prevent It (Spoiler Alert: It Sucks!)

  1. Thank you SO MUCH for this post!! My PMLE began in the third grade… I didn’t figure out what it truly was until this year (I am 24!!) So many derms overlooked it and didn’t listen when I said the sun made it worse. Even after being hospitalized for an infection caused by the rash. It is great hearing from someone else who has it and has somewhat mastered the rascal with helpful tips! I was sitting on the couch with that lovely feeling of bugs crawling on me, and this post made me feel like I’m not so crazy. Hope you have a great and itch-free summer! 🙂 –

    1. The itching is torture, isn’t it? Nothing is worse and it lasts for so long. To this day, many derms still miss it!! It’s crazy and they say it’s something in the sunscreen or whatever. It’s so frustrating!

  2. Hi, just found this blog page after my annual google of PMLE before I start going on sunny holidays. I suffer from it but have found since I started using a special suncream/sunblock (I’m from UK!) it dramatically reduces flare ups. Its called Eucerin and I think its a German brand? Not from UK but they do sell it here in English. As far as I know the Eucerin sun allergy suncream only comes in 50spf and 25spf. Depending which websites have older/newer stock its either called Eucerin Sun Allergy Protection Sun Creme-Gel or Eucerin LEB and PLE Protect or Eucerin Sun Allergy Protect. I think they all do the same, just different re-brand versions. This is specifically formulated for people with PMLE. I can safely say Piz Buin and Nivea suncreams are utter no-go for me as they cause awful rashes for me. Hope this helps people (if anyone is reading it like me after a year!)

    1. Yes! The Eucerin cream as the ingredient that helps to protect the skin longer. I’ve ordered a similar product on line and found it helps. But of course, if you go in the sun too long without reapplying and the rash occurs, there’s nothing to help at that point.

    2. hi, i have terrible PLE and I just tried the Eucerin Sun allergy SPF 50 before a recent trip to Florida. The trip had all the makings of a PLE disaster (florida sun, early spring first time skin exposure). I am amazed and SO excited that this works fantastic. I experimented a bit just to see how it would affect me. My ple always starts on my shins first and then my chest. If it gets real bad it goes to my forearms and stomach but that hasn’t happened often since I’ve figured out what I have. I put the Eurcerin everywhere but my stomach and that is where I broke out on the second day. This is amazing that I can finally go back to beach vacations again and be protected by this. I would love to find it in SPF 25 just to get a little color but I don’t see that available on any website. Where do you find the Eucerin SPF 25 in the U.K. ? is it somewhere I could order online? I’m in the U.S. Thanks for the info…

      1. The Eucerin SPF 30 has to be ordered online. It used to be on Amazon but you should be able to order it here:

        But if you get exposure, you may get the rash! So, be really REALLY careful. I feel like once it happens, it’s literally 10-12 days of pure torture!

    3. Hey
      Sorry to hijack this comment, couldn’t find out where to put my own.

      I have had success with a antihistamine called fexofenidine. Please note i took it once a day for 2 weeks before a holiday and then during the holiday. Im from the UK so dont really have issues at home. Im on holiday and didnt do this and of course its flared up. deep water helps as it absorbs the UV (0.5m absorbs around 40%) rest of the time stay under the umbrella and im keeping it under control. Good Luck!

      1. Fexofenadine is over the counter in the US so people can easily try it. It’s the generic for our brand name Allegra. I still get a reaction when I’m on antihistamines but that’s WONDERFUL if that’s something that might also work that people can try! The other thing that MIGHT work is a kenalog injection prior to like a vacation or something. But the thing is… If you risk it, and the rash comes, it’s living hell for like 10 days. Mine is so insanely itchy that I can barely function. Is yours intolerable itching when it flares up? I can’t get my mind off it, it’s like millions of ants crawling all over my body!

        1. I am a sufferer of PMLE as well. I am 26 and had never had an issue until 2 years ago. The first time it happened was after a trip to Florida (I live in Indiana) and it was the most terrible rash/itching I had ever experienced. It truly is indescribable! I would often use the words “crippling” and “torture” when explaining it to friends/family. The only thing that helps relieve the itching is an ice cold bath/ice pack and oral corticosteroids like Prednisone finally knocked it out after 3 weeks. I remember the first time when it was really bad, I didn’t get more than 3 hours of sleep each night for a week because I had to stay cold to the point of shivering in order to keep the itching manageable. Any time I would pull blankets up and get cozy, I would wake up 30 minutes later with the rash festering-it was miserable to say the least. Luckily, I don’t get the rash here in Indiana even in the summer time, but as soon as I go south for a beach trip…I’m done for! Even when wearing spf 50 with reapplication every couple hours. I find I have better luck when I keep track of the UV index and just completely avoid the sun or stay covered up during peak hours (when it reaches 7+) and wear spf 50 everywhere all other times of course. I have yet to try this Eucerin sun allergy product, but I have a 3 day Florida trip coming up that I’m going to try it out for and hopefully have no rash coming back home! Thank you all so much for sharing and for the suggestions!

          1. My first experience was a trip to Mexico. It comes on out of nowhere, doesn’t it? I totally understand when you say torture. It’s like I’d rather be burned or have acid put on my skin that suffer that itch. The ice really doesn’t help stop it but without the ice it’s like millions of bugs crawling in the skin that you can’t stop. OMG, truly torture! I ordered the Shirudo on line but you stlll have to be super careful and keep reapplying. Once the rash comes, that’s it… it’s like we’re done for as none of the creams resolve it. I wish they could come up with a better solution and I’m waiting for some medical breakthrough to happen!

  3. Thank you for this. I believe that my daughter might have a sun allergy (she is 4). The way you described the itchy is the best description ever. I’ve watched her scratch her fingers even when giving her medicine that is supposed to help. I think all it does it knock her out and I still see her frantically scratching her face, chest and hands, to the point that she has scratched off her skin. I feel so horrible for her and everything that doctors have given us-is just treating the rash, based on research and family history (grandfather and aunt both have a sun allergy) we think it is that, but haven’t been formally diagnosed. We’ve tried several different antihistamine medications and none of them have work, other than some sunscreen on a current rash and that helped. It was the only thing to help her and she hasn’t broken out since. I’m currently looking at other options for her to see if there is something better or something she might like more.

    1. It’s very hard to describe the itching and it’s just non-stop. I think once the rash sets in, there’s not much that can help. They have prescribed me all sorts of topical corticosteroids but none of them stop the itching. Antihistamines don’t help me either. The one thing that helps a bit is ice. An ice pack on the angry itchy skin helps with the itching. They have these ice packs at Walmart called CryoMax and they last about 6 or 7 hours without getting anything all wet. I have several of those and I use them if I break out.

      Also, I’m told using a lotion with AGR+E helps to extend the sunscreen protection. I bought a tube from a provider called Shirudo but there are others out there. In other countries, the Eucerin sunscreen has it added in to help people with sun allergies but here in the US, it’s not an FDA approved ingredient so it’s not in our sunscreens. Some of these things might help if you try. Otherwise, the best thing really is sunscreen – and reapply often!

      1. I’ve been suffering with this since my teenage years. Back then. was embarrassing! I’d be the teenager with a huge rash all over! I was afraid that others thought I was contagious. I remember the first time it happened. I was on a camping trip . I slept on an old mattress . I woke up with huge welts on my body. Everyone assumed it was bed bugs. But every summer after that, it happened. We thought maybe it was the detergent my mom used or a certain food that I ate, but never found a definite cause. I finally realized what it was when I was in my late 30s! I’m now 42 and still suffer! In fact, I just got back from a trip to a water park with my family. This morning, I stumbled upon this page because I was wondering what to do for relief. I jumped in the shower and scratched the hell out of my legs with a loofah. I’m not trying to sell anything, and I say that because I do sell hair products. I remember reading about a man with eczema who used an oil that I sell. Apparently, it cleared up his irritation. It’s for hair, and I was skeptical, but I tried it right after my shower. I didn’t stop there. I actually got my hair moisturizing masque and I swear. ..instant relief! I’m not itchy. Red welts are still there , but the itch is gone. I took pictures of my legs to do a before and after. I guess the bumps will go away on their own later. Hopefully sooner than I’m used to which is about a week and a half. Anyway, I just wanted to tell you about the itch relief.

        1. It’s the worst itch of all time! What hair oil is it that helped stop the itching? Can you leave a link so other people can check it out and maybe reach out to you if they would like to try it for relief? Thank you so much for sharing.

      2. Hi, alpha-glucosylrutin is approved by the FDA and it is used in many products (even as a food preservative) in the US and Canada. It is false to say AGR is not approved by FDA. The reason why Eucerin Sun Allergy is not sold directly in the US and Canada is not because of AGR but because most new generation UV filters used in Europe are not allowed by the FDA. Also sunscreen is considered a cosmetic in Europe and a drug in the USA and Canada. It makes it very difficult for european brands to import and sell their products here without significantly changing the formulation.

        1. I wrote this article a while ago (not sure if you noticed the date) but it is still my understanding alpha-glucosylrutin is not approved for the management of PMLE or sun related conditions. That would be considered “off label” use.

          Botox is approved by the FDA but it’s not approved for use in a lot of areas it’s commonly injected, again off-label use.

  4. I just came back from a dermatologist and I have PMLE too 🙁 until now I really thought that I’m allergic to sunscreen or an ingredient in it and I looked for the most natural one I found. It also gets triggered by different pills. Now I know that no matter what I do, this is my life now. I feel so sad and depressed, especially that I’m in holiday in Spain at the sea for 2 weeks and today is just my 4th day here. I have a rash all over my body, legs and arms in full and on my chest. My skin it’s so itchy and also painful and hot at the same time. The doctor gave me a cream to aply once a day and Heliocare to take for 3 months. And he said that every spring I should start to take the pills for 3 months and I should never have problems with the rash. I’m very curious how it will work out, but at the moment I just wish my skin would heal so I can enjoy the rest of my holiday. I don’t want to sunbathe, I just want to be able to visit the coast of Spain without getting a rash and maybe take a few baths in the sea, as I heard salt water improves skin conditions. I’m happy to see that I’m not the only one going trough this. Not in the way that I’m happy you all have this problem, just in a way that somebody knows how miserable it feels. People around me don’t take me seriously, it’s like I’m just complaining with no reason, so I suffer in silence. 🙁
    Anyway, sorry for the long comment and thank you for giving me some hope. 🙂

    1. I completely understand where you are coming from. I also attributed the first break outs to a sunscreen allergy and then a reaction to my birth control pills. But year after year, it kept happening. I first got zapped while on vacation in Mexico. If you are in Europe, there is a product they sell there that can help protect the skin better. It is in their sunscreens and some locations and it’s called AGR+E. I ordered mine from Shirudo but I’m sure you can find a lot of products just in the pharmacies there. If you combine it with your sunscreen, many people say it really helps. There are some sunscreen lines like Eurcerin who have an after care product. It might help. I can’t buy it here in the US so I have never tried it.

      I’ve gotten the rash all over early on during my vacations too and no one seems to understand how intense the itching can be. Plus I would feel embarrassed because it look like a map of the world on my skin. For me, I couldn’t get it off my mind. I found putting ice on it at night helps to relieve the itch. I also took over the counter antihistamines but I didn’t really feel they helped the itching for me. They do for a lot of people though so you might want to try that too and see if it helps. I would load up with an arsenal of stuff when I got a break out. In desperation, I would try everything.

      I’m so sorry you got a breakout while in Spain but try not to let it ruin your vacation. Keep the sunscreen on, try some soothing creams (and the ice or cold compresses at night) and keep your arms and chest covered up. Within a couple days, the daytime itching should settle a bit so you can get your mind off it but it might still bug you at night. I wish there was some other solution but it takes some time to clear up. I always said if I was a dog or cat and itched like that, I’d jump out a window. =)

      Try and enjoy your vacation and know that you are not alone! There are many of us that know how intense that itch and pain is. It’s easy to begin feeling depressed about it so try and keep your mind on other things and try the different things available to soothe the skin and get your mind off it. Sending love and good vibes! =) === Janine

      1. This is my third day since I had the rash and my skin cleared up so much, I don’t know if it’s from the pill or the cream I applied, but it looks so much better. 🙂 I still have a few red patches on the back of my hands and on my feet, but I suppose they will clear also. The rest of the skin started to look like normal, just a bit dry and flacky, nothing a good body lotion won’t fix.

        I feel better mentally also, so I will dare to go and take a bath in the sea after 6PM. Of course, I’ll use 50+ protection and I’ll take another pill of Heliocare. I’ve read so many good reviews on Amazon about these pills, I really believe they will help me get trough this summer. And every each person who left a review about them said that they used the cream from Eucerin, the one for allergic skin and that the combination made miracles for them. 🙂 I’ll definitely buy it and try to see if it works for me too.

        Like I’ve said, I don’t really want to sunbathe all day or get tanned, I don’t enjoy those things anymore since I’ve started getting the rash. I just want to be able to walk in the sun or take a bath in a pool or in the sea without transforming myself into a rashzilla. :-)) Cause the itch is also making me nervous. 😀

        Anyway, thank you so much for all the advices and good vibes. I’ll try to enjoy the rest of my holiday without thinking too much about my skin not loving the sun, and of course, I will not forget to protect it the best I can. Sending love and hugs! 🙂

        1. I’m so glad that you are feeling! Sounds like something helped which is wonderful because it always feels like nothing ever helps. You are definitely not alone! It’s hard for someone to understand how the horrible relentless itching and burning takes over your thoughts. It can truly be depressing. But I promise you aren’t alone. I hope you enjoy the rest of your vacation. Stay safe!

  5. The night cream works amazing once you have a flare up but I use the day cream under the SPF so it’s probably the most important for preventative reasons

  6. I have struggled with PMLE for the last 4 years, it came out of no where and it truly is the worst. I dread sleeping because I know I itch in my sleep which makes it much worse! I have had to get 2 steroid shots and been put on prednisone twice because of the edema in my arms and blisters and rashes in my inner thighs. Two summers ago I tried every non pharmacological treatment possible. I even tried desitin (diaper rash cream) hoping it would work some miracle on the rash. Last summer I started taking heliocare (similar to sunsafe rx) two weeks prior to going on vacation and also taking beta carotene as well. I also ordered the shirudo but like you I was suspicious. I can honestly say I think the shirudo solved my PMLE problems. This summer I did the heliocare and beta carotene without the shirudo and am now suffering with an outbreak. I just ordered shirudo yesterday and it will get here friday so I am interested to see how it works when applying it after an outbreak has started instead of using it preventatively! I will keep you updated with the results. I also do take epson salt baths for relief and use a lidocaine cream and it really helps for short term relief of itching and takes away the prickly feeling. I think it has something to do with the numbing in the lidocaine.

    1. I find ice helps a lot and it’s probably due to the numbing sensation, like lidocaine. I just looked up the Shirudo and I’m going to place an order. The stuff in that is supposedly something that works in conjunction with the sunscreen for extra protection. Once the rash comes on, you’re still zapped right? The AGR+E I’ve been looking at. I’m definitely going to try it. Thank you so much!!!!!

      1. I’ve been using shirudo cream for 2 years now and have not had the rash yet since using it. I apply the cream then spf and reapply the cream every couple hours. I also believe low iron stores could be a cause for pmle. Look into getting your ferritin level checked.

        1. My iron levels are good. I’ve heard about the Shirudo cream. Actually, quite a few brands have the same ingredient but it’s not available in the US. I can order it on line still though. I think I’m going to go that route and see how it works. It’s the AGR+E ingredient that is supposed to help when used in conjunction with sunscreen. I always feel like everything we really need is never in the US. =(

          1. I’ve ordered several times and the shipping is fast and cheap. A little goes a long way. The large tube lasts me almost 2 summers. Good luck. I hope it works for you. It’s been a life saver for me.

            1. I was just on their site a few minutes ago! I’m going to place an order. Did you get the night cream? Day cream? Which products did you get that you liked? Do they have a scent?

              1. I just use the AGR+E lotion. I apply before sunscreen and continue to reapply. Haven’t had any bumps since using it. It has a slight scent but goes away once it’s on. Before using it I would use a retinol body lotion to help heal the bumps faster. That seemed to work really well.

                1. Last night I ordered the smaller tube of the day moisturizing lotion. If it works for me, I’ll order the entire collection! I would get the rash about 8-10 hours after exposure. So, for example, I get exposed in the afternoon. At 2AM that night, I’ll wake up from the itching. And once that itch starts, WOW! OMG! Then I lay under ice packs to try and stop it! I haven’t tried a retinol cream. Usually I don’t get bumps but rather raised patches. Kind of like a map displayed on my arms and chest. =(

                  I’m really excited to try this cream! Thank you so much! Hopefully it was an OK scent? And not a weird or gross smell?

                  1. Not a weird smell at all. I get bumps about 4 days after exposure. Mine are itchy but not severely itchy. Just ugly. I actually thought it was keratosis pilaris when I first got it. I get them mostly on the backs of my upper arms, thighs and calves. They go away after about a week. I’m so glad I found Shirudo. Let us know how you like it!

                    1. This sounds like mine. After a couple days of sun exposure. A little itchy, but not as bad as others describe. Mine are just more ugly looking. On my hands, feet and knees. I am in Florida now and have it.

                    2. I get zapped after my first day of exposure. It happens about 12 hours later. My skin gets tickly and before you know it, I look like I have a red raised map all over my chest and arms. The itching is insane though. Like it just won’t stop. I usually put ice on it just to get it to stop itching because literally, NOTHING works. And there’s nothing I hate more than itching. And of course, it’s super ugly and obvious! I like in Phoenix so we get a lot of sunshine here too. I just have to really be cautious about sunscreen. If you pack in on and keep reapplying, should be oK.

                  2. I’ve just been diagnosed with PMLE. And I found this blog looking for help. Have you seen good results with the Shirudo cream?

                    1. Yes, the Shirudo cream lets you be in the sun a little longer but must wear sunscreen still. And it doesn’t help if you get exposed too long and the rash happens. Once the rash happens, it’s just time really for that to settle down. It’s a really frustrating condition to try and manage. =(

  7. I’ve been trying to figure this out for the longest time. Not sure if i have prickly heat or PMLE. I don’t have any visible signs of a rash at all but I do have a prickly itching feeling. If I itch then it feels WONDERFUL but within 2-5 seconds a second wave of itchiness comes much more painful and powerful. Its a vicious cycle. Is this the same symptom you guys get?

    I’ve found relief from a product (not avail in NA) called Fenistil Gel (Dimethinde Maleate is the active ingredient)

    Really trying to figure out what i need to do to protect myself and help with the itching when it comes

    1. Kind of… this is how it comes on for me. At first, I don’t see the rash. But it starts to tickle.. and then I itch and the big puffy rash appears and it’s non-stop itching for a few days. Then the rash lingers but doesn’t itch and finally fades around 10 days. I think the best thing if you think it’s sun related is to use a lot of sunscreen and reapply often. Once the rash comes in, I use ice to help stop the itching but it’s an intense itch. If you Google Prickly heat, it looks different. Mine doesn’t come until about 8+ hours after I’ve been in the sun. Then I’m usually woken up in the night and the itching starts.

  8. I have had severe PMLE for the last 20 years. Really gets me down. I live in Wales, UK and only last week we had beautiful weather and just out in it for 10 minutes made my arms full of itchy horrid lumps. It ruins my life on holidays and last year I had to fly home from Portugal early because of it. I take steroid tablets 3 days before holidays – 10mg 3 times and day and continue to take them the rest of the holiday. This helps a great deal but does not stop it altogether. Its embarrassing when it happens. I no longer ever sunbathe and hate walking in it.

    1. I haven’t been out in the sun in years either. But I will still get zapped like just being outside walking through a parking lot or something. I have been at the urgent care on many vacation try to stop the rash from itching. It’s miserable, I know! Did you see that sunscreen link I shared from Eucerin? It has something in it that helps protect more for those of us with PMLE. I can’t get it in the USA, but in the UK, you can buy it! Might be worth a shot!!

      Thanks for visiting Debby! You aren’t alone with this one! XOXOXOXO

  9. I was diagnosed with PMLE last year along with several topical skin allergies, many of which are found in most sunscreens. Awesome. I started to notice minor symptoms in my late twenties. I live in Cleveland, so we only have about 3 solid months of sunshine if we’re lucky, but in April/May is typically when my first outbreaks occur. I get small blisters mostly on my arms and raised red bumps on my arms, chest and thighs. The symptoms do tend to get better as summer continues, but I’m pretty much guaranteed to be super red and rashey all summer. In Nov 2017, we took a trip to Jamaica. My entire body was a big rash, however on our last day (a Tuesday) I spent almost the entire day in the ocean. My skin was healed by a wedding we had that Saturday. I think the salt water from the ocean helped to dry it out and since I was headed back to Ohio with no further exposure it healed up so much more quickly than I’d ever experienced.
    I also really like the Australian lizard sunscreen. I’ve found it goes on the best and I’m not allergic to it.

    My allergist gave me some OTC cortisone for when I do get outbreaks that seems to help a bit. For itching, I usually do really cold, refrigerated wash cloths with YL lavender essential oil dropped. Lavender is known for its healing and calming effects (I use a drop in my daily body lotion too).

    Has anyone tried light treatments at the derm office? That was going to be next step to try next spring before the sun come out.

    1. From what I’ve read, many people get their first outbreak of the year in the spring as the sun is out more. I’m in Phoenix so we have intense sun all year. I have to always be super cautious. It’s like the worst insane itching of all time if the rash comes on! OMG! Ice really helps when I’m at a bad point. The lavender oil sounds awesome and that’s a great tip. That might be nice in water that cold compresses are dipped in? And maybe Epsom salts would help as you noticed a big difference with the ocean. I’m curious what your doctor says about that? I’ll ask mine at my next visit.

      I haven’t tried the light treatments – that is where they desensitize, right? One thing I’d like to try in combo with my sunscreen is products with AGR (Alpha-Glucosyl-Rutin). It’s not available in the US but it is everywhere else. Eucerin makes a Sun Allergy product (if you Google it) and there’s quite a bit more from different brands. I’m going to pick some up in Canada this summer but a lot of great feedback from people on that. It doesn’t help after the breakout but it supposedly helps protect much better in combo with sunscreen. Maybe worth exploring or seeing what you doctor may know about it.

      I wish something would make it go away!!! It sucks completely, doesn’t it?

  10. Thankfully I only have a mild form of PMLE but nevertheless, it’s unpleasant. I only really get it on my fingers and sometimes toes but I remember it developed in childhood. Nasty blisters that hurt. My German pediatrician called it “sun allergy” back then.

    1. This is really bad but… one time mine itched so bad that I couldn’t take it and I burned myself with a curling iron to try and make it painful instead of itchy. Then I have a painful and very itchy area that got infected. WOW THAT SUCKED. I’m glad it’s only mild for you. There are some very nice sunscreens that you can use on your hands and feet that don’t feel gross like a lot of them do.

      1. Oh my this is extreme! Mine is so mild that I honestly don’t even bother. It just hurts really bad when the blisters dry out and the skin becomes like scales almost. I don’t get a rash, just blisters. Thankfully, only a few so I can deal with it. I can only imagine how bad it must be for more severe cases. I have to admit though, I never really liked direct sun exposure much, so I prefer to stay away from the sun at ALL times (try that in New Mexico). Helps with premature aging as well 😉

        1. Thank god you don’t have it bad! I honestly wish It was painful as I’d prefer that over itching. It is sort of a blessing in disguise to keep away from the sun. Nothing good comes from exposure to UV Rays only premature aging and wrinkles.

          Thanks for stopping in!! XOOXX

  11. I am pretty sure I have PMLE. I am definitely going back to the derm to get more answers.
    I moved from my native of SoCal (Lake Forest) to Corinth, Tx about 6 yrs ago. 3 years ago after wearing a tank top on the first warm spring day, I started itching my arms like crazy. It’s was so bizarre because I had never experienced itching and burning like this. I mean I grew up in the sun, lived going to Laguna Beach 4-5 days a week. How is this possible I am now “allergic to the sun”? I won’t tolerate it either. I love the sun, I hate the cold and rain and live being with my kids and family in the pool all summer.
    Ice packs seem to be the only thing that helps me. For a while I thought I was allergic to sunscreen but I truly believe PMLE may be what I have. I hope there is something my derm can do because I refuse to cover up (it’s Texas and gets dang hot), and we go to Gulf Shores, Al almost every summer for a week. Ugh!! I am so frustrated!

    1. OMG, I’m from Socal too! I grew up north of you and practically lived at Santa Monica beach! 15 years ago, out of nowhere, it hit and I thought it was a reaction to my birth control but year after year I kept getting a rash. Finally, I found out what it was. Just last week I updated this post with the mention of AGR which is not available here but can be ordered on line. It might be helpful and sounds promising.

      I thought all sunscreens sucked but actually, after dealing with this shit for 15 years, I have found some sunscreens that are fabulous… like I want to wear them fabulous. Using the sunscreen often really helps but now I’m a fake tanner. And… nothing will stop the itch for me except ice. It’s the worst itching, isn’t it!? OMG! Sometimes heat will help it but in the summer, that is not the greatest feeling to be sitting in a scorching hot tub.

      Please let me know what your doctor says! I know it’s frustrating. Plus, it takes forever to clear up. =(

      1. Ok the derm confirmed it! Waaaa!! No real help except a steroid topical (I’ve used it before) called Ultravate, and I got an anti itch spray ($200) b/c my ins doesn’t cover it! And hydrazine (Vistiril) which is an antihistamine but I can only take it at night b/c it makes me so drowsy! My derm said to use sunscreen with zinc oxide and some other oxide. She said Sunbum is a good one to try. She is also having labs drawn for an autoimmune panel to be drawn since now I have 2 auto immune things going on. I was diagnosed with alopecia areata at about 17. I lose little patches of hair here and there. Thankfully I have a ton of hair so usually myself and my hairdresser are the only ones that notice it.
        So that being said I’m a little worried about the PMLE being an issue long term! Ice helps me too, and cold showers! Nighttime/bedtime is the worst. I can’t exactly sleep in ice ?

        1. I’ll have to check into the prescriptions you got, I always the same crap and it doesn’t work. Which anti-itch spray did you get? I’m always getting rashes from other things to. Like… I have food sensitivies. It just sucks. The PMLE came on about 15 years ago for me. But the food sensitivities have been more recent. Maybe I should ask about the auto-immune tests – my doctor never suggested that. I have known several people with alopecia. Sometimes it is very extreme and other times, I wouldn’t know otherwise.

          Nighttime is really bad when the rash is there. I get those giant Cryomax Reusable Cold Packs from Walmart. Heaven sent them to me!! They stay cold for hours and there is a medium and large size that work really well. They don’t get wet so I love sleeping with them. =)

          1. I will totally try the Cryomax ice packs! I need something that I can sleep with! The Levicyn spray is what they gave me and I just tried it. Not helping. You look pretty tan, I have a medium complexion and tan really easily, so I wonder if “tanning” like some others do, would help me? I saw you said the ice packs are “cryomax”, I wonder if cryotherapy would help? I’m open to anything!!

            1. They are golden – I love those ice packs! They don’t get anything wet and they stay cold a really long time. The spray barely does anything for me either. I even have a prescription for Clobetsol which is the strongest topical corticosteroid I could get – and NOTHING. Still itches like hell!

              I’m not tan at all. My skin tone is just an olive shade but I will get a rash before I have any sort of real tan so I use a lot of sunscreen. The exposure might help desensitize you but I’d have them do it at the dermatologist because if you get too much and you get the rash, you will be so miserable. The other thing you could try and this is really weird, but I blast the itching area with a hot blow dryer and I don’t know why, but it helps stop the itching for a while. Weird but it works.

  12. I have PMLE too. I live in CT and have not had the rash here, the sun isn’t strong enough. I get it whenever I go on vacation where there is stronger sun- Florida, etc. I am grateful I don’t need to worry about it all summer here. I do vacation in tropical areas once a year, and I did research years ago recommending desensitizing the skin via tanning bed. I know how bad tanning beds are, but the rash is so intolerable! So if I do several weeks of short sessions in a tanning bed, enough to essentially get a minimal tan, I do not ever get the rash no matter how long I’m in the sun on vacation! I still get itchy on my scalp sometimes since I don’t have sunblock there, but I can be on the beach or by the pool with no issues. I’m sure I’m at higher risk for skin cancer, but I hope that doing this once a year doesn’t kill me. FYI, my doctor cannot condone use of a tanning bed, but she is intrigued that it works for me. This is my experience, and I certainly cannot recommend a tanning bed to anyone in good conscience, but it has allowed me to enjoy a tropical vacation to escape a cold CT winter.

    1. I would try that if I was going on vacation and it would work! What is really odd is, in Phoenix, I’m exposed ALL YEAR on my arms and face. I use sun block but even when I get the longer exposure, if I’m out a little too long? Zap! And it is truly intolerable. I mean, the itch is depressing and it’s so severe. I have heard there are desensitization treatments that can be used (which I think is essentially what you are doing but just in a controlled environment). I gave up on tropical places because of this and I’d really like to be able to go out snorkeling or jet skiing and stuff like that. When you have gotten the rash, is there anything that works for you to stop the itching or clear it up faster?

  13. I’m shocked that doctors estimate 10-20% of the population have some sensitivity to the sun. I thought it was a pretty rare thing. I’m sorry to hear that you suffer from this – like you said, it’s nearly impossible to avoid the sun during day time. I have heard of people who have severe sun allergies who live a nocturnal lifestyle instead, to cope. I hope there will be advances in medicine research to help find a cause and / or a cure!

    1. I thought it was rare too. I thought I was pretty much alone with it! For me, I know that I can be out for about 10 minutes or so and that’s it. A little longer if I’m protected. But in the earliest part of the spring and summer, I usually have my guard down and then I get the rash. I’m waiting for so many things with medicine! I would a cure!

    2. I thought it was rare too. I thought I was pretty much alone with it! For me, I know that I can be out for about 10 minutes or so and that’s it. A little longer if I’m protected. But in the earliest part of the spring and summer, I usually have my guard down and then I get the rash. I’m waiting for so many things with medicine! Europe is far ahead of the US too.

  14. Interesting piece. Those symptoms and that rash do not look fun, not at all. I have the opposite issue a special allergy to the cold & wind. I get hives on my face in cold, mostly windy weather. Sometimes just in the cold. When I first get it, my face feels numb, but it begins to feel itchy when I go inside or put a scarf over my face. Mostly it’s been okay the last ten-years, but sometimes my throat still feels numb & itchy that can be an issue. There’s a name for it to. I didn’t know it more common, as is your sun allergy, until I had a professor in university who saw my face after busing to class, and he says, “oh you have the same thing I have.” He explained it to the class. I think his grandson inherited it too.

    Yours sun allergy sounds much harder to deal with; it must effect you throughout the year? I found if I take a Benadryl or at least half of one, so it doesn’t knock me out, it helps a great deal; especially, when my throat, or the inside of my mouth has. hives, swells, or are itchs from the cold. Maybe it would help sun allergies since it’s an immunity thing as well? I also take a small dose of allergy medication. It’s actually an asthma med called Montakukost or ‘The Singular’ and it stops my allergy symptoms before they occur, if I take it every night. I have a spray that works in my nose or mouth, as well, for the cold allergy and others to animals, mould, grass, the outside atdifferent times and places.That could help?

    I’m sure you’ve tried so many things. I know for me, the medication helps a great deal, but not all the time. In a particularly vicious cold, I have to take shelter until the hives fade and if I drink something, take half a Benadryl and use the spray, my throat is generally better. Most of the time, the meds have helped with not getting hives or feeling itchy on my face, these past ten-years since a year two after University. But before, my mouth/throat, face, lips, sometimes hands, arms, and legs, could get hives and would feel itchy.

    Washing my face often helped for some reason or just taking a hot shower when I got home. My face/throat/mouth is the worst and they take time to fade. My face turns red, my hands etc too, once I’m inside and that’s when I’m really itchy. I know cortisone creams aren’t great, but if you need them, you need them. As allergy over-thecounter meds go, I’ve found Benadryl to be the best, not much else works. Benadryl has a stick for skin allergies, especially itchy ones, that helps sometimes.

    Otherwise, I’d see your doctor and get a referral for another doctor who specializes in allergies. I did do allergy testing with a naturopath. I did not find this that useful, except for discovering food sensitivities. You have to expose yourself to an allergen or it doesn’t show up. For instance, my animal/outdoors test did not catch that I have terrible allergies to cats, just some breeds. I wheeze & having breathimg issues, until I go away from the cat hair. After drinking water and going outside, I notice a difference . But I still have to take Benadryl though, even with a small dose of my regular allergy med.

    Naturopall allergy tests wounldn’t catch something like my allergy to the frigid cold or your sun allergy. But, I’m pretty sure you can get a blood test now through a doctor, that tests for all different allergens, that might be useful in your case, along with prescription meds beyond the cortison. Just a thought.

    1. I have definitely heard of people having reactions to cold and wind. I didn’t know there was name for the condition. When looking up causes for hives and rashes (I also deal with food allergies) I came across several reputable sources that discussed the effects that cold weather can have on skin. The sun allergy was weird because for many years, it never showed up. Then, one year, vacationing in Cancum – it happened. And then it kept happening until we finally found out it was PMLE. Now, I can usually manage it but every now and then I let my guard down and I’m outside not protected well enough and I get the rash. Then, I want to die!

      I’ve had hives from food allergies and the medication will help and usually they come and they go within a few hours to a day. With the PMLE rash, OMG… it’s like 7-10 days to go away. So, it’s a constant battle to get rid of the itch. I like the Benadryl gel. Have you tried that? I keep it in the refrigerator and it can help sometimes. The Alevacyn spray is really helpful and that’s something I was just recently introduced to by a new dermatologist.

      I just got a new dermatologist and an allergist so I’ve been going through the allergy testing for the foods. The PMLE is sort of just something I am stuck with unless I try the newer drugs that help suppress the immune system. I’m kind of nervous about that route but I’m thinking about it. Did you do the allergy testing on the skin to help find food sensitivities? I am getting ready to patch testing. I never had any food allergies and then out of nowhere I was in the ER looking like a balloon and it turned out I had developed an allergy to milk (among a ton of other stuff). They found that in a blood test and then went further with skin testing and so forth.

      It’s so weird though. I always get scared there’s something else someone is missing but …. did you find out about food sensitivities later in life? And was the cold reaction something that showed up later as well?

      1. I also had an allergy test done, and I found out more than I was expecting too. It seems that I have an intolerance to lactose, egg yolk, white rice, some detergents and I am allergic to shrimps. This year I also started to develop a heat rash on my arms and for the first time of the year, PMLE. Here we go again. It’s not enough that my arms are always covered in a rash because of the heat and the skin looks horrible, I also got the rash caused by PMLE on the back of the palms and face. It’s like my body decides to go against me every spring until the end of the summer. I don’t know what to do anymore, it just gets me down, it makes me feel depressed and hopeless. I try to think that there are people doing worse out there in the world, but it doesn’t help.

        I found your post last year when I was in Spain at the sea and got the rash all over my body. That was the moment when after more than 7 years of struggling, I found out that I have PMLE. I’ve read now the comment I left here then, and I felt everything all over again. I came back to read all the comments posted after that, in hope that maybe somebody found a miracle cure.

        I started one month ago to take the Heliocare pills before the summer like the dermatologist from last year said, but it seems that they didn’t really help. I also started to take probiotic pills, because I’ve read last year an article about somebody who took them 3 months before the summer and didn’t get the rash. I don’t know if they really help with that, but they won’t hurt either. Now I’m thinking that I should also take some betacarotene pills and even some vitamin D. I honestly would take anything only to help me. I would also try sun bathing at least a few minutes from time to time, maybe it would help my skin.

        Did you find anything else that could help? Big hugs!

        1. I’m so sorry for the delay! I’ve been crazy busy at work and really behind in my blog and on social media. It is super upsetting to get the rash, and … I can relate on the other allergies. About 18 months ago, I wound up the emergency room to find out later I was allergic to dairy and various fruits so I had to change my diet. There went everything from Nutella to butter and ice cream and milk chocolate. OMG, I thought I would die. But I totally adjusted to a new diet and found new things to love.

          With the PMLE, I have not truly found anything that will stop it. I just stay out of the sun and if I am in the sun, I use cover ups and reapply sunscreen often. There is a product called Shirudo which can be applied before sunscreen that helps to extend the time before you get the rash but I never risk it because I can’t tolerate the rash when I get it.

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