Spring and summer are arriving! For me, that means I have to be extra careful with sun exposure. I have an acquired sensitivity to the sun called polymorphous light eruption (PMLE or PLE). It’s often considered an allergy to the sun. Living with PMLE in Phoenix, Arizona isn’t easy. 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 minimal amount of sun exposure. This developed later in life and took me years to find out what was causing this strange rash. If you 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 living with PMLE and write a blog post. 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 eighteen 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 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. 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. 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. 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.
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 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. It’s depressing, anxiety invoking, and it can leave you feeling hopeless. When it finally goes away, it’s an incredible feeling of relief. People must talk about these things more. While this condition isn’t life threatening, it can certainly affect your life and everyone around you. 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!
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. I wouldn’t purchase their product but Eucerin has a product that contains the same 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.
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?