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?

beauty and lifestyle blog Phoenix

 

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

  1. 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?

  2. 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.

  3. 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?

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