Shirudo Antioxidant Lotion

Shirudo Antioxidant Lotion
PMLE Symptom Prevention! With AGR!!

ABC Pure * Safe * Beneficial

ABC Pure * Safe * Beneficial
Arbonne Baby Care Set

Wednesday, September 2, 2009

Polymorphic Light Eruption: Finally Some Relief (Updated 2/28/10)

EVEN NEWER 2012 POST {HERE}

September 2012 post {HERE} About a lotion containing AGR developed specifically to lessen/prevent symptoms of PMLE!!!

***PLEASE MAKE SURE YOU READ THE NEWER AND FURTHER UPDATED POST AND ESPECIALLY THE COMMENTS ON PMLE AT: http://mommy2connor.blogspot.com/2010/04/pmle-update-just-in-time-for-summer.html 


**Update:  Also check out my newest post {HERE} with some additional and consolidated info!**

I mentioned in a previous post about a sun-induced skin disorder that I have suffered from since about mid-teenage years. As a sun lover and beach goer, the idea of having to stay out of the sun was pretty devastating ... and not really an option. After doing a little research, it seems experts believe 1 in 10 people suffer from this disorder - and not surprisingly, European countries are spending much more time and energy trying to come up with prevention and treatment remedies than the US. As you can probably guess, in the states if you tell a doctor or dermatologist that you have a sun-induced skin issue, their answer is to..... stay out of the sun!! Duh!!



If one more person told me the rash I developed was sun poisoning, I was going to LOSE IT!!! I can tell you first hand that if you find someone else who gets this AND knows what it is, I will be very surprised!



Suffering from polymorphic light eruption (PMLE) has led me to do my own research and experimentation with prevention (not so much treatment since once the rash appears it's really too late) and I'd like to share my findings here for those who might be interested.

(all info in italics was taken from the best website I've found on this disorder: http://www.patient.co.uk/health/Polymorphic-Light-Eruption.htm)



What Is Polymorphic Light Eruption and How Do I Know If I Get It?


Polymorphic light eruption (PMLE) is a skin condition where your skin reacts to sunshine with a rash. It is not the same as sunburn. PMLE is not harmful, but can be inconvenient. Usually the PMLE rash occurs in spring or on a sunny holiday, when the skin is not used to sunshine. The rash heals completely. There are various treatments and preventative measures.

Reading just this small paragraph told me I was reading about exactly what I develop while on vacation. For many years, I blamed the sand and the ocean for the rash I developed.... thinking I was maybe allergic to some sort of shell fish or something. Turns out, we're just in the sun a lot more while on vacation.


Polymorphic light eruption is a particular type of rash that occurs in reaction to sunlight on the skin. The name comes from 'polymorphic eruption', which means a rash that varies (it can look different in each person). It will be called PMLE in the rest of this leaflet.With PMLE, the rash follows a particular pattern (explained below under symptoms). It usually starts when you first get sun on your skin after a long period without much sunshine. For example, in spring, or if you go on a sunny holiday during the winter.PMLE mostly affects people aged 20-40 years. It is more common in women and in people with fair skin type. It probably affects around 1 in 10 European women.

While it can come in many 'forms', but rash always looks the same. It starts with just a little itching sensation on the chest or upper arm. Within a couple of hours it looks terrible... red and blotchy, even a bit raised, and the itching is indescribable. That night, it might go down a bit, but within minutes of being back in the sun the next day, it's back and gets continually worse until I'm able to stay out of the sun entirely for at least a few days. As I said, many people would stop me and say: "Gosh, you have sun poisoning!!" But it simply wasn't possible... and I wasn't even sunburned! Annoying!



What Causes PMLE?

PMLE is caused by the radiation from the sun. The degree to which people suffer from this varies a lot. Some people cannot even get near a window and must stay covered all the time in order to not experience symptoms. Others, life myself, need a lot of exposure over the course of a day or several before the rash emerges. There is also research that shows you can 'toughen' your skin up by increasing the amount of sun exposure slowly - which is a technique those with severe PMLE must use to even be able to step outside on a sunny day. This might also explain why I hardly EVER get this on a late summer vacation (because we've been out in the sun, at the pool, etc... all summer already), but a February or March beach vacation is the worst!

The rash is usually on the parts of the body which have been covered during the winter, such as the arms and chest. The face and hands are less likely to be affected.The rash clears up within a week if you stay out of the sun. However, if there is more sunshine on the skin then it is likely to get worse. It heals well, without scarring. Symptoms tend to improve during the summer, as your skin becomes more adapted to sunlight.

There really is no definite way of diagnosing that you have PMLE accept for "phototesting" your skin's reaction to sunlight --- the best way is just to notice a pattern of reaction to the sunlight over time. As a sufferer of this, believe me, you know if you have it!!


Treatment and Prevention

Here's where it gets worse. Treatment basically comes down to wearing high SPF sunscreen (UVA AND UBV protection!), covering up, staying out of the strongest sunlight (10-2) etc... This is all fine and well for someone who is OK with slathering on their kids SPF 55 and staying hidden under an umbrella all day! NOT ME! So, moving on to what matters:

According to this website (and others - just google PMLE for more info!) there are other things that can work to prevent this from occurring (other than just staying out of the sun!) Here I have gone down the list of what I have found:
From the left: Eucerin Daily Sun Defense, Ocean Potion Anti-Aging Sunblock, pure vitamin E, beta-carotene pills

EUCERIN DAILY SUN DEFENSE LOTION: This is what a dermatologist recommended to us years ago to use for PMLE. There is a lovely mix of alphaglucosylrutin (AGR), Parasol 1789 (avobenzone), SPF 15, and other anti-oxidants in this lotion, which I would use twice a day for about a week before heading to the beach, plus while we were at the beach, and it warded off the rash pretty well. Here's the catch - it became harder and harder to find, until I realized it had been discontinued (apparently because of the miracle-working AGR??) by the company. I contacted them and they said there was nothing comparable or a replacement. Joy. I was able to order some from Germany about a year ago (for a pretty penny, might I add), which was awesome, but now it appears I might not even be able to get it there anymore! Ahhh!! I do still have a bottle of this stuff left, but the scarcity of it led me to begin researching what else could help prevent PMLE, instead of stalking this lotion!!

SOLARICARE (or HELIOCARE) PILLS: Read up on these by clicking here and here. I was about to go this route, when I decided to read what the main ingredients were. I went the way of trying to duplicate this pill myself. That being said, if I was able to just grab this from Target or something, and they were a little cheaper, I would be willing to try it. I would also try them if I had any specific knowledge of these puppies working: so if you've tried them, please speak up in the comment section!

BETA CAROTENE: I found these pills at the local CVS for under $10 for a ton of them. I began taking 2 per day on days I was in the sun and 1 on days I wasn't. This is a no-brainer because BC is so good for your skin and nails anyway.

TOPICAL VITAMIN E: This, also from CVS, comes in a little plastic bottle of oil. I added a couple of drops to my lotion and sunscreen every time I applied. I also would put it alone on dry parts of my skin. Research shows applying this topically can be more effective treatment than taken orally, which is why I went with this oil.

ANTI-OXIDANTS IN SUNSCREEN: A lot of articles I read recommended using a sunscreen with Parasol 1789 and plenty of anti-oxidant vitamins, which aid in the reduction of cell damaging free radicals - meaning it not only helps the skin prevent as much damage, but also helps repair it. Most people recommended suncreeens by Eucerin, but I could only find really high SPFs with the anti-oxidants, plus I couldn't find any with Parasol. Then I stumbled upon "Ocean Potion Anti-Aging Sunblock SPF 15 with Parasol 1789 and Solaplex". This had everything I wanted, plus was pretty cheap!

*UPDATE*

Check out these links:
http://www.ncbi.nlm.nih.gov/pubmed/16760827
http://www.ncbi.nlm.nih.gov/pubmed/15238098?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

Prevention Tips to Try Based on Comments Below:

1.) Heliocare: Ok, now I really want to try this.  A few of you mentioned this, and even that some doctors sell it.  I plan on ordering this in the next month of two!  There are many sites online, though I'm not sure of any stores to buy it at.  I will definitely do a review of this product.
2.) Light Therapy: Done at a doctor's office.  I need to look into this... is it just a tanning bed?  hmm?
3.) Claritin, Niacin and Beta Carotene for two weeks prior to vacationing.  This is similar to the pills I was talking about taking in the post, but adding Niacin and Claritin.  DEFINITELY trying this!
4.) Sun lotions with Parasol and / or Helioplex!

5.) Also check out this webpage which suggests Lycopene as being the best free-radical scavenger in the carotene family ... which is what we want!

6.) I just read an interesting take on PMLE online where they suggested PMLE is an immune system reaction to a 'preditor' (the sun) attacking the body.  Interesting, I'll be looking further into this.
Keep the comments coming people... especially anyone who knows WHERE you can find/buy products (or pure) alphaglucosylrutin!?  Anyone have thoughts to share on HelioCare as it relates to PMLE?  Sun-season is almost here again!


THE BREAKDOWN!!  
Here is what I'm going to take this Spring/Summer to prevent this PMLE nightmare and we'll see what happens:
PILLS:
-Beta-carotene, niacin, and lycopene supplements (in the form of pills)
-Alternatively, I may try the HelioCare pills instead .... I need to read the ingredients on this to see if they might be the same of what I listed above.
- Claratin for 2 weeks before a vacation (as well as the other pills listed before up to 2 weeks before the vacay!)

TOPICAL:
- Eucerin Sun Defense (for the alphaglucosylrutin, Parasol, and other anti-oxidants)  Mostly I'll use this to build up resistance before a vacation.
- ANY sunscreen I can find with the most anti-oxidant and free-radical protection I can find.... the lower the SPF the better .... higher SPF's are easier to find with this particular protection.
- Extra Vitamin E oil added to lotions both while in the sun and after-sun.

OTHER:
- A hat does wonders for me, and since my face and chest rarely tan well any way, and the chest is generally where my PMLE first pops up, the hat can REALLY increase the number of days I can stay rash-free while in the sun.
- This is obvious, but build-up sun slowly the first few days in intense sun and DO NOT GET BURNED even a little bit, which just decreases the amount of rash-free time I have in the sun by about 10 times!  No burning!



OK - so that's my five minutes on a soapbox. What say you? I'd love to hear from others who suffer from this, what works, what doesn't, etc.... Have you tried the Solaricare or Heliocare pills? Anyone? I'm intrigued!
PS - Please remember - I am not a nurse, doctor, dermatologist, etc... not by a long-shot. I am just a normal person suffering from PMLE and trying to make other people's lives better! PLEASE PLEASE PLEASE research everything for yourself before trying anything!!! It's hard to find info on this (which is why I'm putting it hear) but it is possible!!

185 comments:

Anonymous said...

Hey! I have had PMLE since my early 20s. There is not a whole lot of info out there, so that is very frustrating! I actually took heliocare for the first time last year, and I noticed a HUGE difference. I actually cried one day when I had been to the beach and only had a very mild reaction the whole trip. I take one pill a day for a month before summer and all summer long. I take it 30 min before exposure if I can, then I will take another one a few hours later if I am still out there for awhile. All the articles I have read said that there are no side effects reported, and I did not have any either. Thanks for your info on different creams, as most do nothing for PMLE. I think the combo of Heliocare and one of your suggested sunscreens is really gonna help!

Anonymous said...

Thank you for your info. I too suffer from PMLE and it is nice to know there are others looking for ways to still enjoy the sun and beach and not just "stay out of the sun". I had a severe reaction (first time it was so severe, even though I have had PMLE for so many years, I have lost track!) last fall in Mexico. It was the worst yet and I have been looking for options here in the US for prevention. Thank you again.

Lindsey B. said...

Thanks for reading and commenting, guys! I am still constantly looking for new info on this and will report back on this blog as I find things..... if you find anything that works, PLEASE let us all know!! My biggest hurdle is finding sunscreens that still allow you to tan (so no more than SPF 15 for me, please!) but give the same prevention results! Of course you can help prevent with hats, clothing, SPF 75, etc.... but that is not the answer I'm looking for!

Anonymous said...

You did a great job with your research. I too have this problem.
Like you I couldn't figure out what was causing my rash. For years I thought it was a reaction to sunscreen. It took a long time to narrow this down. I have found that a sunsceen with helioplex or parsol 1789 do wonders. They don't leave me symptom free after a week in the sun on vacation but it sure does make it manageable. I also found that wearing a long sleve cover up in the water in the tropical climates work good even though it wasn't the image you had when you planned a caribbean vacation. My dermatologis did recommend light therapy in the dermatologist office could help starting several weeks ahead of your planned trip. But the cost and time involved doesn't seem worth it. Be smart and don't worry about a great tan. It isn't worth ruining a great vacation.

Anonymous said...

I started getting PMLE about 4 years ago and went through all of the frustrations you mentioned above. I go to Mexico for a week in the spring and every year I find myself covering up in the shade after a day or two. Last year, after extensive research, I finally found a combination that worked. About two weeks before the trip I started taking Beta Carotene, Niacin, and CLARITIN! I lasted all 6 days in the sun without having to cover up or take cover in the shade. My dermatologist sells Heliocare and I would love to hear if it works.

Anonymous said...

I started getting PMLE about 4 years ago and went through all of the frustrations you mentioned above. I go to Mexico for a week in the spring and every year I find myself covering up in the shade after a day or two. Last year, after extensive research, I finally found a combination that worked. About two weeks before the trip I started taking Beta Carotene, Niacin, and CLARITIN! I lasted all 6 days in the sun without having to cover up or take cover in the shade.

Likewise, my dermatologist sells Heliocare and I would love to hear if it works.

Lindsey B. said...

Thank you guys for all the input!! I'm adding some of your suggestions to the main post for others to find more easily!! I am definitely going to try many of these preventions this summer!!

Keep the suggestions coming!

Anonymous said...

I am 26 and have gotten the PMLE reaction every time I have been to Hawaii on vacation. It happened the first time on my honeymoon, and every time since (4x total), and each time is progressively worse. I have never had this problem before, and now each time I go, I get this lovely reaction. I get your frustration, because I'm not sunburned at all, but just get these itchy white blisters on my chest, arms, hands, shins, and feet. It's miserable. Anway, I'm going to Maui in a week and a half, and I stocked up on the Vitamin E oil, the Ocean Potion Lotion, Heliocare, and I'm going to start taking the Claritin and beta carotene this week. I will definitely let you know how it all works out. I live in IL, but found your post as I was trying to figure out what I was going to do this time around, so thanks for sharing your research, and I'll get back with you when I'm back from my trip!

Anonymous said...

I think starting the supplements a couple of weeks before the trip and continuing with the dosage during the trip is essential! I look forward to hearing if the combination above works.

Anonymous said...

Thanks for the info. I also suffer from PMLE and I don't feel alone anymore! anyway, I'm going on holiday in two weeks so I've ordered today the heliocare pills and I will get the other ones recommended. I'll be posting my results here! :D

Lindsey B. said...

Thank you everyone for stopping by!! PLEASE don't forget to come back and let us know how your "preventions" work!

Kimberly said...

Hello! I was doing research on PMLE today and ran across your blog. I've been itchy for about 4 years now, but its been just the last few months that I have discovered what it was, especially since my condition seems to have worsened. Thanks for all the info. Its nice to see other people who struggle with the same thing. I'm a southern californian and it is impossible to stay out of the sun, and the sun never goes away! I did stumble across Eucerin Calming Itch-Relief which brought the rash I got today down to an ignorable level. The itch is not completely gone, but I can live with it. Not that I want to live with it, but as its bound to happen before I find what works for me - I'll keep it close. Thanks again!

Anonymous said...

Aloha! I'm back from Maui and I wanted to share my findings with you and your readers. First though, I want to say thank you for posting all your research and findings, because I GREATLY benefited fromyour research and tips. I had 6 full days in the sun, and 3 days (2 at the beginning of the trip, and 1 in the middle) or non-sun (or non-beach sun, rather). These days were filled with hiking, tourist activities, museums...stuff like that. Each day during the week leading up to my trip I took one Claritin D (I think 10mg), 1 betacarotene, and 1 niacin. During my trip I took 1 Claritin, 2 betacarotene, 1 niacin, and 2 heliocare (sometimes 4, if I remembered to take another dose in the afternoon.) I know you won't like this part, but I used the Ocean Potion 30spf each day (with a few drops of Vitamin E oil in my first application). I also bought a huge straw hat (and pretended to be JLo with my big hat and big sunglasses) and wore that pretty much the whole time I was sitting in the sun, except for when I was sitting on my stomach. The last day I used the 30 spf on my chest and shoulders (where I get the worst reaction) but used Ocean Potion 15 elsewhere, and by the time I got to the airport that afternoon, I had just a little tiny reaction on the tops of my hands. Very mild and went away the next day, but that indicated to me that the spf 30 was my threshold. I was ecstatic, though, because I was actually able to enjoy my vacation and not stress out the whole time about getting an unsightly and irritating rash. I used to get it on my chest, shoulders, arms, shins, feet...not sunburn, just rashy and bumpy. I got a gorgeous tan (which I was pleasantly surprised by because I thought I wouldn't tan with the 30), and my skin feels and looks healthy! Seriously, this was my 5th time to Hawaii since summer 2007, and this was the ONLY time I didn't get the rash. This gave me so much hope, because to be honest I was dreading this trip since everytime I went to Hawaii before I was miserable from the middle of my trip until a few days after I returned home. Now I know what to do to prevent this and the best part is...I still got really tan! I'm not sure which part of the combination of things made the difference, but if I had to guess, it would be the Claritin D, the spf 30, and the hat for sure. I hope this give you and your readers hope because I know what it's like to have vacations ruined and not fun because of this lame allergic reaction. Thanks for your posts and know that your research has definitely helped one person! All my best!

Lindsey B. said...

Kimberly: Good to know! I'll be looking for that when we get to our next vacation destination just in case!

Anon: Thank you so much for the update!! It's great to hear that you not only survived the sun better, but also got an amazing tan!

I'm telling myself: SPF 15 or higher (of course the kind with anti-oxidants, etc...) + Vitamin E all over this year while on vacation to see if helps! Plus a hat when I can stand it to further protect the chest area! If I can still achieve a good tan doing that, then I'll be happy!

I'm also scouting out places to buy the Heliocare.

Keep the updates coming! I'm finally feeling better about all this time spent researching PMLE!

JeniLee said...

I have had this problem for years and it is getting worse. Right now I am itching horribly from spending 30 min outside with the kids hunting for eggs. The itching is killing me. Thank you so much for the advice! I am finally going to make an appointment with a dermatologist, I thought I was the only one with some weird bump disease. I am now following you!

Anonymous said...

I want to thank You for this blog. I am a 46 year old female who has suffered with PMLE all of my life. Dermatologist didn't know what caused it and just told me to stay out of the sun. In fact until recent years they didn't even have a name for it. In fact I am allergic to most sunscreens. Well, I tried to order Heliocare, but have still not received my order. But I ran a crossed the "Sun Pill" that has the same main ingredient and it shipped in two days through Amazon.com. Now I love the outdoors, but have always had to wear long selves and what a bummer that is. I started taking the Sun Pill on Sunday and worked in my garden most of the day, with a short sleeved shirt on! It was 75 degree's. I did not have a breakout and normally my arms would have rashes all over and last for days.I believe it worked, but will update on my continue results. One thing that I do want to mention is that my doctor had run a vitamin D test about a month ago and my level was 17nl and should be at minimum 30nl, so I have been on 50,000 units a week of Vitamin D. Did this play a role in my not breaking out? I don't know. Since you get vitamin D from the sun, I wouldn't think it would make the reaction to the sun go away, I was probably that low, because I couldn't go out in the sun. Ruth from Kansas

Anonymous said...

I'm so glad I've found this website, lots of great advice.

I am a 27 year old female from the UK and I have just been to the doctor today because I have had a spotty rash on my chin which only comes out just after being in the sun and then dries up into red flaky patches. I had it last summer and it has just started this summer so I decided to do something about it!

The doctor has said that he thinks I have PMLE, does anyone else have it on their face? Most of the websites seem to say that PMLE is very uncommon on the face, I don't have it anywhere else on my body although I have had prickly heat when I've been to very hot places but this is very different and clears up much more quickly and easily. It would be good to know if from what I've said you agree with my doctor and think it sounds like what you experience.

Thanks in advance for any advice, Kathryn

Douzeper said...

Hi Folks, Nice to find other sufferers, I am 41 Male from NI-UK and suffered with PMLE for last 15 years. In the past I used an oil based sun lotion called Spectraban, it practically stopped it entirely. Tried to buy more and my chemist said it was discontinued so over the last few years I have been trying other sun creams with varying degree's of success, most only work for a couple of days. But I have just realised that yes Spectraban Oil based lotion was discontinued they still do it in a cream. It has a higher UVB protection than UVA and from what I have read it is the UVB that promotes PMLE more. SO I have ordered some "Spectraban Ultra", expect delivery tommorrow, it worked last time so I see no reason why it should not work this time, I will let you all know.
It is made by the same Company that make medicines for other skin problems and it includes some of it in the Sun Lotion, you find the makers website here... www.stiefel.com

Douzeper said...

Kathryn, I get it on my neck/face/below ears, on ears, scalp and forehead, so yes you can get it on your face etc. Basically I get it anywhere that is exposed to the sun.
Wors bits (around face) are just below ears, top of forehead and cheeks.

Chelsea said...

You are my hero! I've been getting it for about 6 years now and was so tired of everyone telling me it was sun poisoning and that "there's nothing you can do, just let it run it's course" I knew it had to be something more, or atleast some way to prevent it!! I am very active in the summer and love being outside and at the beach. I was always so frustrated when I would break out in a rash and be forced to stay in the shade!

I am going to write all of this down and stock up on supplies!

Thank you thank you! You're my hero! Haha

Donna said...

Do you mean Claritin D Allergy meds?

FYI Went to my dermotologist this past week re my PMLE. Just got back from a trip to Aruba and had an outbreak even using SPF 70. Was informed that SPF 70 is not better then SPF8 or 15 with PMLE. You'll just get the PMLE and no tan. She suggests a desensitizing treatment using light therapy and oral steroids. Thought I'd try yours first and see what happens this summer as I'll probably have another outbreak as I didn't get any tan on my trip.

thank you for all the helpful info.

Donna said...

After posting the above I was looking through a "Soft Surroundings" catalog and they have a product called "Skinny Beach Sticks" which claims to along with help reducing weight and bloat, will increase your skin's tanning pigments. It has Betacarotene and Lycopene to help build your natural UV protection. It says to start two weeks before your next vacation by adding a single packet of powder to a glass of water once a day. Price is $60 for 14 sticks. Thought you might be interested as you talked about Betacarotene and lycopene.

Lindsey B. said...

Donna: Yes, I did mean Claritin allergy medicine!

Also, interesting info from your doc on the SPF situation. Have you tried light therapry or oral steroids? I would do it if I was going on an early Spring vacay again to somewhere like Jamaica, etc... where the sun is so very strong!

Fabulous info on the *Skinny Beach Sticks*! I'm going to do a little research and then add it to my newest updated PMLE post! THANK YOU!!! Please let us know if you try them!

{http://mommy2connor.blogspot.com/2010/04/pmle-update-just-in-time-for-summer.html} --> update PMLE post

Lindsey B. said...

Douzeper: I added the Spectraban product to the list of products to look for to prevent symptoms!

Chelsea: I'm glad you found us, too! Let us know if you have any luck with what's recommended! You can also visit my newest post regarding PMLE here:
http://mommy2connor.blogspot.com/2010/04/pmle-update-just-in-time-for-summer.html

Thanks to everyone for stopping by AND adding such great info!!

Anonymous said...

I wanted to follow-up on my earlier post. I had purchased the "Sun Pill" (It's has the same ingredient as HelioCare) and have went for weeks now without any rash, even after 5 hours in the sun and no sunscreen. Before it would take about 1/2 hour and the rash would appear and itch. I actually got a sun burn and I am happy about it, because it didn't come along with a rash that would last for days. I purchased the "Sun Pill" through Amazon.com, but you can now also purchase this from Target. Ruth from Kansas

Douzeper said...

A follow up on Spectraban cream... working great now for two weeks, but.. it is a very sticky cream. It seems to remain sticky most of the day and its not very comfortable to be honest. Wish they would bring back the older oil one!

Have ordered some Ultramist tanning spray as recommended on here, but it seems here in the UK I cannot get any higher than SPF10!

Same as the "Sun Pill" cannot be bought in the UK :-(

Anonymous said...

Thanks everyone for the great information. I break out on my face after sun exposure and it's getting worse each spring. I'm looking for natural methods of prevention as I question the safety of frequent, long-term use of sunscreen. Please keep adding your results!

Douzeper said...

Some light atthe end of the tunnel... CUV 1647 is a drug being tested at present and MIGHT be available 2010. It is what everyone is using to tan using an injection "melanotan" but that is an illegal (so far) derivitive of CUV 1647. A company in Australia is currently running trials in US And Europe..
It wil be an implant in your skin no bigger than a grain of rice, here are some links FYI..

http://www.clinuvel.com/scenesse/drug-product


READ Q&A Number 4...
http://www.clinuvel.com/clinuvel-q-a-a

http://www.clinuvel.com/skin-conditions/common-skin-conditions/polymorphous-light-eruption-ple


I'm looking forward to its release!

QueenLizard said...

Hi everyone,

I've been following this blog as I'm a PMLE sufferer as well and I wanna share my findings.

I live in the UK and I recently spent one month in Australia. I was really scared first because we all know how the rash can ruin our holidays!!

Anyway, I manage to get ‘heliocare’ online (dermacaredirect.co.uk). I took helicoare, beta-carotene, niacin and clarityne pills two weeks before travelling and also while I was in Australia but, unfortunately for me, I didn't see any remarkable changes. I did notice the rash didn’t come up straight away as before though.

However, I bought a two different sun creams from a brand called Piz Buin, one spf 30 and one called allergy 50+ and I can honestly said that the allergy one was the only cream that helped.

While in Australia, I just got the rash once and this was because I didn’t use any protection so I could find out which cream was working.The spf 30 didn't help me.

I will stick to the Piz Buin allergy 50+ cream for this summer and maybe try the other creams I’ve read about here but I wouldn’t take pills anymore as they didn’t work for me.

Also, in Australia I bought a face cream from a local brand called ‘Invisible zinc’ and it worked for me as well. I’ve just seen it released in some departments stores here in London this week.

Anyway, hope this help you a bit and we can all enjoy the sun again!

Although, I always see the positive side of it and at least we won’t have many wrinkles! :D

Links:

http://www.dermacaredirect.co.uk/

http://www.pizbuin.com/summer_suncare_allergy.jsp

http://www.invisiblezinc.com/benefits.htm

Anonymous said...

Hi,
I have suffered with this for so many years. My family and I went to Hawaii last Spring and I had to stay out of the sun for most of the trip because on the first day I got the eruptions. DISAPPOINTED! We are planning a trip to the beach over the 4th of July and I am going to do what I can to find the products you talk about.

My husband actually happened upon your blog while he was searching products.


I also take medicine (high blood pressure pills) that make my skin already sensitive to the sun and when you add PMLE to the mix, it's just horrible.

Thank you for all the research you have done on this condition. Anyone that suffers from it knows just how frustrating it is.

Anonymous said...

Hi,

To Kathryn, you are not alone! - I also live in the UK,and have PMLE on the face. I get it on the hands and the back of the hands. I get blistering heat like a burn on my face at first, on the cheeks, chin, side of the nose, and sometimes around the hairline. I get severe reaction and have done for 4 years now since a bad attack of shingles. The doctors said it might have triggers an acute anti-immune reaction to the sun. Just my luck eh. Well, i take now Perfectil, which is a mutivitamin formulated for giving essential nutrients to help maintain healthy skin, hair and nails. It contains Niacin (vitamin B1) 113% recommended dose, Mixed Carotenoids, and Grape Seed Extract as well as other vitamins. You can get this in mostgood Pharamcies. it's made by Vitabiotics. www.perfectil.com and this helps.... Also, as well as trying to dive out of the sun which is imposible unless i want to live like a vampire, for severe suffers who can't even be out in it for a short time, i found Neutrogena Ultra Sheer Sunblock SPF100+. I don't care what anyone says, it's the best if you don't want to get effected too badly. I don't care about tan. I just don't want to look and feel awful! - It's lovely. Smells great. Lightweight and clean feeling on the skin. It's a broad spectrum uva-uvb and waterproof.This sadly doesn't avoid everything for me, and i still have to wear hat, large sunglasses and gloves sometimes, but preventative is better than waiting for it to get bad and wonder what to do next. A lot of it is agrivated by stress, so best to try not to worry too much. It's not life threatning, just extremely annoying! One last thing that works for me but i'm not saying it will for everyone, Clarins HyraQuench Cream to put on dry itchy scaly skin, is amazing for me. I find it feels calming, and calms down the redness associated with this curse of a thing. Good luck to all.

Anonymous said...

I have suffered with severe PMLE for 8 years now, I have never had it in the UK before only abroad. It got to the point where I never wanted to go on holiday and when I was there I had the worst time, firstly dreading when the rash would appear (without fail day 2) and also taking the steroids that my specialist had prescribed- which had the most unpleasant side affects and didn't really help that much until I was home anyway. As a last resort I had been seeing a chinese doctor for 6 months who had been charging me hundreds of ££ for accupuncture and pills and lotions and potions and just before I went away my rash appeared for the very first time in the UK, I was distraught so I stopped seeing this rip off doctor. I was doing some research on PMLE when I came across this blog and I took some of the advice. 2 weeks before I went away I took a cocktail of Heliocare, betacarotene, niacin and loratadine, I ordered the Ocean Potion sun cream (it cost a fortune importing it from the USA).
Anyway I went on holiday feeling positive however, day 2 my rash started to appear on my face I was devastated. Then my fiance got ill and we ended up going to a chemist where they sold La Roche Posay Xthelios sun cream, I had read that it is recommended for PMLE sufferers but I had already spent a fortune on Ocean Potion. I bought the extreme fluid for the face.....Within a day not only had my rash disappeared from my face but I didn't get any form of rash the rest of my holiday. I carried on using the Ocean Potion on my arms but my rash started to appear so I used the La Roche Posay on my arms as well and that worked too. I don't know whether it was the La Roche Posay and the cocktail of pills that worked or just the La Roche Posay but for the first time in 8 years I enjoyed a holiday and it was the best feeling EVER! I am going on my honeymoon to the Maldives next year and I was dreading it but now I can't wait. This holiday I still wore my hat and large sunglasses and I sat in the shade but I don't care anymore because normally my rash would still appear but this time it didn't!!! I have never blogged before until now but I just had to write and let other PMLE sufferers know not to give up and there are things that can help. I can't guarantee that La Roche Posay will work for everyone but please do try it. It is the greatest feeling to be able to enjoy a holiday rather than spending every day in tears :)

Anonymous said...

Hi i'm a newie to this, i have had PMLE now for nearly 2 years i'm 38 and i Live in Australia.

like you Lindsey i was scratching my head thought i might have been bitten by or knocked the top of my foot on coral or something in the water when i was snorkering in the whitsundays at the end of 2008/09 the itch come on like a mosquito bite at the start on the top of my foot but just grew into hive like rash, bumps with little blisters my hands and fingers where completely covered in bumps and itching, but also pain like burning accurs when i start to scratch.I get it on my v of my neck ,arms, hands bottom of legs ears, tops of feet and nose
i have been traveling quite a bit in the last 2 years from winter to summer (only in australia) every 3 months, my last trip was to broome where i had my reaction to a point i spent a day at the beach with my family,use sun screen under an umbrella that night i started to get flu like symptons, sinus, swollen tonsills like i had an infection in my eyes and chills the next morning i woke up and had really bad muscle weckness and couldn't open a bottle of water no energy just bummed around the hotel for the day couldn't even go outside to me the sun was EVIL and it was not sunstroke, that day the rash would have been there for 3 days in all, now all those symtoms where getting better as the day went on but i didn't go outside until the day after and i was fine but still itched
i am starting to dread it as it's spring now thats why i am researching again and found this wonderful site thankyou thankyou i fill normal again some people think im weird does anyone get these flu like symptons eyes watering and do you think it could be a hormone related issue
i am definately looking into these vitamins and heliocare q: how many mg per tablets of betacarotene and niacin do you take a day
thanks to queelizard for your findings in Australia it's given me a heads up
will all let you know how i go this summer

Blushy said...

Hi all

I have had PMLE for 13 years since i was 19. I used to find that wearing sunscreen prevented me from getting the symptoms. However in the last two yars i have found that sunscreen alone is no longer preventing it. Even the neutrogena sport factor 70 +.

I order the Heliocare tablets last year and found that they didnt do much prevent the rash. However i started taking them when already on holiday. So it might just be that i did not start taking them a couple of weeks before i went away.This year i started doing some research. Sonme one recommended Fexofenadine 180mg tablets.
My doctor was sceptical as this medication is not known to help with PMLE. I started taking them a few days before i went away along with 1 x Heliocare and 1 X Clarityn allergy.

I went to the south of france in September, it was 40 degrees C plus on day one.The next morning it was absolutely horrified to see the beginnngs of the rash on the back of my neck, despite wearing sunscreen as well as the pills. As most people know, once you have the rash you are stuck with it for nearly a week!

Heres the interesting part, the rash never got any worse - its didn't even get to the itchy stage! And it was completely gone within 24 hrs.

I don't know which of the pills helped, or all of them but i'm betting on the Clarityn and the Fexafenadine. I also think it pays to start taking the pills a week or two before you go on holiday, i recon if i had done this i would not have got the rash at all.

I am off to New Zealand this week where the sun is much stronger - will let you know how i got on!

Determined to find a way of tackling this! Good luck to everyone - this is the best site i have seen for PMLE sufferers!

Kate - UK

Anonymous said...

Hello! I am so relieved to see other people suffer like i do with this! I am a fair skinned 27 year old from Michigan and i remember getting a "itchy rash" when i went to Disney World when i was three. Ever since then whenever i travel below Ohio i break out in the awful rash, no matter what time of year it is. One year i was in San Diego and the rash got so bad from spending one day at the Wild Animal Park...my parents took me to a dermatologist who was the best i've ever seen. He took pictures of my rash and told me that he studied PMLE during medical school. He was the first dermo to tell me that it would not be a bad idea to expose myself to tanning before i travel to warmer climates. He cautioned me though that he would never recommend tanning in a tanning bed to actually get tan, just to harden my skin. He also said like some of you guys have said that it does not matter, you could wear SPF 8 or SPF 100 and you will still get the rash.

In January i went to maui and had tanned about a month before. Even exposing myself to that about twice a week made me break out in a rash...so after one day in Hawaii i broke out into the awful dreadful rash. My friends called the rash "rashita" which is now a funny inside joke. I have traveled to the caribbean and to southern california, but never to hawaii. I am not sure if it is because i was closer to the equator or if it really does get worse with age, but the rash was the worst it had EVER been!! It was so bad that i honestly have dreams about having a sun rash! Insane!

Either way, we just made our reservations to go back this January and i do not want "rashita" to come back on our trip!!!

I know the sun is not good for you but who wants to go to hawaii and come back as white as a ghost?

I am SOOO happy i stumbled across this site and i can't wait to try these amazing remedies if you will. I really really hope they work because we all know PMLE can RUIN a vacation :( Thank you thank you for sharing all this information!!!!

Liz said...

Thank you so much for this site! I started to cry when I saw there might be hope. We are headed to Mexico again in April and will do anything to avoid another breakout!! We have tried our trips at all different times of the year to see if that would help but I want to go when it is pleasant!!! Keep your fingers crossed!!! I will report back in April!!!

Anonymous said...

I’ve been outside almost fully covered, under an umbrella with spf 80 and still had a breakout. I must have missed a spot when applying sun block; I became burnt in that one spot and boom! The rash is everywhere. One good thing is that it doesn’t scar. I’m going to Hawaii in two weeks and I’m scared to death. I was recently diagnosed with PMLE and it truly ruins a vacation. I’m not really sure when the eruptions started. But I think it has something to do with my birth control pill. It can make you more sensitive to light. Is there anyone who knows what birth control pills will not make you sensitive to light? I’m going to the dermatologist tomorrow and to see what she says. This is my 3rd dermatologist, the first one didn’t know what it was, the 2nd one told me I have 3 options, anti-malaria pills, phototherapy or stay out of the sun. Hopefully this one will give me some reasonable options, I really just want to see what she has to say. I’ve been researching today and found that certain creams with steroids can help but the side effects aren’t worth it. I also read about vitamin therapy and I fully support that. I have such bad reactions to medications; I think the best bet for me would be to follow what you suggest. Thank you so much for your blog!! I’ll post after I see the doctor and after I get back. If your suggestions work for me, they could work for anyone.

Anonymous said...

I have lived in SoCal all my life and I'm an avid sun worshipper. I thought that my "rash" which only developed about 5 years ago was from all the years of damage I did as a teenager. You know, baby oil, ban de soleil, etc. Basking in the sun with NO SPF or protection.

Anyway, I am fascinated by what I'm learning here as I relate it to my experiences and I will say that I have been perplexed because I can go to the river in the HOT arizona sun for 4 days and not get the rash but half day on the beach and I'm as bumpy as an orange. And I always wear sunscreen spf 30. After reading this it occurs to me that all sunscreen are not created equal. When I'm at the river because I'm in and out of the water constantly I wear Banana Boat SURF which is a silicone based sunscreen and much more water proof. At home, not as much since it's heavy and harder to apply. It now occurs to me that it provides a far superior barrier than regular sunscreen. I find that I can "tan" no problem with a 30 and I would much rather my chest be a little pale than all bumpy so I'm going to find more silicone sunscreen ASAP.

Thanks to all for the input and advice.

T. Mansfield said...

My poor 18-year-old son has suffered PMLE for 3 years-mainly on his nose. It's so embarrassing for him! Four different dermatologists were no help-they wanted to put him on steroids and Plaquenil, which I refuse-too many harmful side effects. So, I was SO happy to find all of this info! I am going to the store tomorrow for some of the things mentioned, and also ordering Helioplex. I am praying he has some success. I'll keep you posted.

Donna said...

I'm going to San Diego next month and don't want to break out again with that horrible rash so I just bought some Heliocare pills. I'll keep you posted.

Douzeper said...

Hi folks, you all might want to visit
http://www.facebook.com/topic.php?topic=15934&post=88906&uid=193199520658#!/group.php?gid=193199520658

That's the new drug being trialled that may stop PLE "Scenesse", very helpfull people and have posted a lot of information on PLE

Lindsey B. said...

Douzper: Thank you for the info! I checked out the drug's website at http://www.clinuvel.com/scenesse.

It's still being tested it seems, but maybe an option for us all soon!?

Thank you so much for sharing!

Douzeper said...

Lindsey, glad you liked the info, I actually posted about it on here 27th May last year. I am so hopeing the trials go well, oh the thoughts of a PLE free Summer!!!

Amanda said...

Thank you so much for posting this. I thought I was the only person who suffered from this condition!
I have suffered with this from when I was a small child and my parents took me to the beach. I am in the UK and I have always had very pale skin despite my dark brown hair and eyes. Every year the onset of spring means me using 'factor 50' sunblock or just not going out. I made the mistake today of going out in my garden to hang some laundry out and the rash on my neck is killing me as I type, itching like mad. After 40 years I still never learn! Ten minutes of sun exposure is all it takes. I take Claritin and it does seam to help, if take well in advance. Sadly this unseasonal warm spell caught me by surprise this time so I am only three days into taking it. Still not found anything to help the itching. Mine does tend to get better as the summer goes on, but I don't like the spring at all!!

Anonymous said...

Thank you for posting this and thanks everyone for sharing their comments. I have been suffering from PMLE since I was a teenager and it seems to get worse every year. I am in my 30s now and I would say I have pretty severe reactions. My doctors always say "just stay out of the sun" which drives me crazy because it is like saying "just don't breathe". The sun is everywhere and I love the outdoors so I get depressed every spring and summer. It is comforting to know that there are others out there who understand my problems with the sun. Here are some precautions I take which all help to lessen the symptoms- unfortunately they do not completely prevent the problem:
1. I wear non-chemical sunscreens with spf 30 or higher everyday.
2. I take 1-3 heliocare pills a day in the summer
3. I try to wear longer sleeves, hat, and sunglasses from 9am-4pm
4. I always carry cortisone cream with me in case I get a rash
5. If I get a rash that is really itchy, I take allegra. It seems to help the itchiness.

I hope someday there will be a cure for pmle.

Anonymous said...

I'm so pleased I discovered this blog. I too have suffered from PMLE since I was 10 years old (I'm 35 now) and it appears to be genetic as my mum and grandmother have had it too. Like most, I've tried everything under the sun (pun not intended) to 'cure' this to no avail and have been closely following the 'Scennesse' facebook page for several months but after reading this blog, I ordered some Heliocare pills from the UK website that another poster kindly mentioned and for me they have worked!!!
I am so happy at the moment after spending the day in the garden followed by an evening BBQ with friends with barely a red mark in sight.

My skin is still reacting to the sun as I can feel lumps and bumps in the usual affected places when I run my hands over my skin but they are not itchy and you can't see them - what a huge, huge difference!

For the first time in 25 years, I have been able to enjoy this unexpected lovely weather we've been having in the UK the last couple of weeks. The pills cost me £26 for 60 - they recommend you take 2 a day if you are going to be out all day but I've only been taking 1 with a multi B vitamin pill as I heard that taking B vit's can help too. It's a bit pricy but if it works, it's worth every penny to me. :)

Thank you so much for bringing Heliocare to my attention - I had never heard of it before finding this blog. :)

skast0330 said...

I was diagnoised with PLE today.I have read all the post and my symptoms were different.The dermatologist did a biopsy because my mother has lupus and he wanted to be sure that lupus wasn't the culprit.The biopsy confirmes PLE.I don't have a rash now or ever remember having one.I do however have these white spots on my face, since last year, that look horrible (I finally went to the Dr because my mother was relentless).I got a steroid shot in the back side and was told I would see improvement.Wear sunscreen and that being fair skinned that eventually with exposure to the sun or UV light my body would basically build a tolerance and the flair ups would stop or dramatically decrease.I was never told to limit exposure.I live in the south (on a farm) and limiting exposure to the sun would be pretty hard to do.If I do not see improvement I will try some of the suggestions in the blog.Great info and research by the way.

Jodi said...

Glad to know there are others who can relate to what I'm going through and that I'm not crazy!! I knew it wasn't sun poisoning but no one could ever explain what it was. I've been to a couple of dermatologist and no one has ever mentioned PMLE to me - I figured it out through my own research.

I will definitely try the prevention route the summer and see what happens. I am curious as to what others have found works to treat PMLE when you do have reaction. Are you using over the counter creams for the itch or something else? There are times when my legs and arms itch so bad that I want to cry!

Anonymous said...

Hey,

My daughter is now thirteen and has been suffering with this since she was 5. She is a red head with very fair skin. It took about 5 different doctors to come up with the diag. Ever year it gets worse and it is very hard for her to stay out of the sun because she plays field hockey. Any suggestions would be great!! The dr. just gave her a steroid cream and it is not helping...Please help.

Anonymous said...

I've just been diagnosed with pmle, im 19. im so scared that it will keep getting worse every year its already so hard to handle. i want to be able to go on holiday and enjoy the sun all day and swim in the sea and feel healthy and beautiful not itchy and ugly covered in a rash :(

has anyone managed to prevent this from happening? i dont know what to try, but i have a holiday to jamaica with my boyfriend and its meant to be so special and i really dont want to spoil it by getting down about my rash, but its so hard to stay upbeat when i see so many other people with gorgeous flawless looking skin on the beach having fun and totally carefree. its a terrible attitude, but i just think, why me!! i really hope they can cure this for all of us, i know there are much worse things in life, but i think its horribly unfair for all of us!!

anyway im not sure whether to try light therapy before going or to ask to go on steroids or something. are these guaranteed to help? has anyone had total success at preventing it??

Sophie
xxxx

Anonymous said...

What dosage of Niacin do you all recommend??
I tried taking a pill tonight and had the regular 'flushing' that is expected with taking Niacin pills...but it also made me wonder if the dosage I took was too much.

Stephanie said...

I am like many others on this site. I have had PLME for 10 years, but did not know what it was till last September. The doctor gave me no options besides light therapy or stay out of the sun. I found this site so I thought I would give the vitamin therapy a try. I have been taking the niacin and the betacarotene for several months now. A couple weeks ago I started laying in the tanning bed for small amounts of time everyday. I started at like 5 minutes the first several days. But now I am up to 10 minutes and actually getting a tan. I have gotten several bumps on my legs and chest during this time, but they have not itched and they were gone by the next day. I am taking one niacin and betacarotene in the morning and after I am in the sun or lay in the tanning bed I take another betacarotene that night. I have also been in the sun as well and that is the only break out I have had. I would really try the tanning bed, instead of paying the doctor for light therapy, which is pretty much the same thing.

I am going to the beach next month, so hopefully this will continue to work. Keep you updated.

Anonymous said...

thank you for your postings. I think i have had this for a long time, but just ignored it. This summer after a trip to Texas, the itching was not ignorable. going to the store or website to order products now so I can enjoy the rest of my summer.

T. Mansfield said...

My son had no luck with the combination of: niacin, betacar., lycopene, claratin, and Heliocare. He took it for 6 weeks before he exposed himself to the sun. He broke out and we were very disappointed. What he has had luck with however, is La Roche-Posay Anthelios 40 with Mexoryl SX. It's expensive, but worth it for us.

Anonymous said...

I'm from the uk too and I've suffered with this since I was about 14 (now 37) and to be honest it seems to be getting worse every year. It's so reassuring to read other peoples experiences of PLE as I felt like I was suffering alone. Every holiday ends up with me feeling so down and teary as I'm too embarassed to let people see my rash. The only holiday I haven't had it was when we went to the Dominican Republic (now wondering if that was because I was on anti-malaria tablets - the only holiday I have taken them on?) We are off to Florida in a few weeks and was dreading spoiling everyone's holiday by moaning about my rash. I will definately be trying to get hold of some of the product recommendations on here - fingers crossed!

Anonymous said...

I'm from the uk too and I've suffered with this since I was about 14 (now 37) and to be honest it seems to be getting worse every year. It's so reassuring to read other peoples experiences of PLE as I felt like I was suffering alone. Every holiday ends up with me feeling so down and teary as I'm too embarassed to let people see my rash. The only holiday I haven't had it was when we went to the Dominican Republic (now wondering if that was because I was on anti-malaria tablets - the only holiday I have taken them on?) We are off to Florida in a few weeks and was dreading spoiling everyone's holiday by moaning about my rash. I will definately be trying to get hold of some of the product recommendations on here - fingers crossed!

Anonymous said...

Glad to see this post! I am 60, and after years of tanning, I'm now pretty diligent about applying sunscreen. The problem is forgetting to *reapply* during the day. I developed the rash two weeks ago on my arms, and it has spread in small bumps. Two days ago, I broke out in welts on my neck and chest. The dermatologist immediately diagnosed it as contact dermatitis with an allergic reaction to Benadryl cream. It made no sense to me that applying Benadryl cream to my arm two weeks ago would cause an outbreak on my neck two days ago. I Googled "allergy to sun" and am certain that PMLE is the proper diagnosis. I use an oil free 100% SPF sunscreen, and rely on Natural Glow to give me a little color. I'll just be more mindful of reapplying sunscreen during the day!

Anonymous said...

Hello all,

I stumbled upon this site around March of 2011. I have been suffering with PMLE for about 10 years. It started appearing on my hands the first year while fishing in a boat where you get the double whammy. sun from the shy and the reflection from the water. It slowly migrated up my arms and to my ears over a period of about 3 years. then to any exposed areas.
The crazy thing is I'm Italian and up to the point of contracting this I would be in the sun from 5 in the morning untill sunset on my boat and just tan till I was black. No burning, peeling, redness, nothing. Just tan.
I went through the whole "it's prickly heat" - "stay out of the sun" - "you can't do a thing about it". Doctors have no reason to actually help you with your problem because they want to refer you to get light therapy and pump you full of steroids.
Stay away from the doctors and take HELIOCARE! Since I have been taking it the reaction is very minimal. Infact I believe the reactions I have had are my fault totally because sometimes I forget to take it soon enough or apply the Ocean Potion with Parasol 1789 & Solaplex.
I would like to know more about the Vit D levels being low after long term use though. I think I just may take the Vit D pills to be safe. Why get a blood test?
I take between 1 & 4 pills each day and apply the spf 30 Ocean Potion every 2 hours.
Thanks for this site sooooo much. If it werent for you I would be hiding from the sun and on the verge of suicide from the depression. I went 8 years not doing the things I love because of this and don't think I could have taken another year of it. Now I'm back to coaching Little Leauge baseball and fishing. Life is good except for this crappy economy.

T. Mansfield said...

I had my son on Heliocare, niacin, betacarotene, claratin, and lycopene for at least 6 weeks before he was exposed to the sun. He still broke out. I ordered LaRoch Posay Anthelios 40 with mexoryl and it is working great. (We had previously tried many other sunscreens with no luck). It is a little expensive, but well worth it. Hope this helps some of you!

Jodi said...

I'm so glad that I found this site. I have been dealing with this for 10 years now and it has ruined my life!

I have been to so many doctors over the years ranging from dermatologists to rheumatologists with their favorite focus on Lupus as I also have severe leg pain all the time. Only once have I heard a doctor mention casually to me PMLE, with no instructions on how to care for it.


I experience the hives, awful rash on my face, neck, chest, ears, behind the ears, arms and shoulders.

I have read so many posts saying that they only have this problem when they travel to tropical places and it only really effects them early in the year. I live in Iowa and have this everyday, all year long. I wear SPF 110 and keep my self covered with clothing but still break out. My rash doesn't seem to ever really go away and I'm not sure if its just because there is never a break in sun exposure.

My GP treats me with prednisone when the mood strikes her, but always lectures me on the side effects of steriod use and to "just stay out of the sun".

I am going to try the combo of Beta Carotene, Niacin, and Claritin to see if that helps. So many people over the years asked if tanning beds would help build up an immunity, but I have never been able to do it for more than a couple times without being absolutley miserable. I guess I will just suck it up and give that a try too!

I would like to know if anyone else has the same effects all year long and if their rash never really goes away.

Jodi

Jodi said...

I am so glad I found this blog...

I started on the combo today, Beta Carotene, Niacin, Lypocene and Claratin. I used Vitamin E oil all over where I break out and I already see a difference in my skin. It has started clearing up faster than when I take a high does of prednisone (it started working in 8 hours). I also bought a new sunscreen, Coppertone UltraGuard Clear, No-Rub Spray that has the broad spectrum UVA/UVB blockers in it (it smells wonderful). My boyfriend asked me when I brought everything home how much it all cost. I told him it was only around $40, but that I would spend $400 a month if it worked!

I went to the lake today, but didn't get there until 5, so not much of a chance to see if it helps with further break-outs, we are going again in the AM... keeping my fingers crossed! Thanks so much :)

Jodi

Anonymous said...

Hi All,

The sunscreen that worked for me was...La Roche Posay, Anthelios with Mexoryl. I highly recommend trying it!!

I get it off Amazon and try to get the French version...although I'm not sure it matters. It's pricey.... but worth the peace of mind to know you can be outside during the summer. I had reactions through the car window...so I know UVA is a big factor in my PMLE symptoms. I also put 3M window Coating/film on my car windows, so i didn't have to deal with it while driving...also works!

Good luck, I hope this post helps someone!!

Anonymous said...

After reading everyones comments, I have ordered some La Roche Posay but want to buy some Heliocare tablets. Does anyone know of a reputable company in the UK that sells them as I'm a bit wary about buying tablets on the internet? Failing that as we are travelling to Florida in two weeks is there anywhere I can buy them from whilst there?

Anonymous said...

Hello! Could you please tell me how much licopene and betacarotine everyone is taking? Do you increase it while on a sunny vacation? Thank you!

Anonymous said...

Try purchasing a UV lamp and desensatize yourself in lower doses, gradually increasing before your scheduled vacation or sun exposure! This did wonders for me.

I won't be checking this blog, but if you have any questions, shoot me an email. iusckeeper@aol.com

lotsamamma said...

Last night I happened to mention to my neighbour that the one time I was in Hawaii 5 years ago, I had this terrible reaction and thought I was allergic to the sunscreen we bought and mentioned some of my symptoms, and she said "oh, it sounds like Polymorphic Light Disorder, my daughter has that". I had never heard of this before, although at the time my doctor was convinced that it was a reaction to the sun.

I usually stay out of the sun (I'm quite fair and red headed and burn at the drop of a hat) so I don't usually have problems at home. I live in Western Canada and my doctor also mentioned that the light quality is different the closer to the equater you get - that was my first (and so far only) trip anywhere tropical.

the only thing that worked for me to take the hives away was to double up on Claritin (on the advice of my doctor). As in, the dosage is once every 24 hours, and I took them every 12 hours. She even said if it wasn't working to try once every 7 hours. It stops the cycle of the hives.

Anonymous said...

I've had PLM for 15 years. I grew up on the beach and spend summers at the pool or beach. I can't imagine life without it. But, PML has taken control of my life- at least from April - December. I have an hour commute to and from work and I find the sun exposure through my window seems to do the worst damage. The minor rash I get is nothing compared to the itch which seems to be triggered by nerves, not the typical surface itch. I've learned to cover my arms and neck in the car with a cloth that blocks the sun- normal clothing does not block the dmaging rays. The only releif I have found after 15 years is direct icing when I am going out of my mind with the itch and constant pain killers- basic pain managmement. I also tyr to get a good base tan early inthe spring and keep it all summer. However, if I mess up and get burned it seems to trigger an "itch spot" for the rest of the summer. Also if I miss a weekend at the pool or beach and can't keep up the tan it triggers the itch. Once triggered I have it for the rest of the summer till the sun loses its intensity in December.

I just read on line about alpha-melanocyte-stimulating hormone which is the natural substance drug companies are trying to create so they can market it. It causes the body to release melonin and create a tan. Does anyone know about this? can you get it at a natural food market or a natriopathic doctor? If so, what form does it come in and how is it taken?

Another question I have is window tinting; has anyone used this in their cars and does it work?

I've been looking for information for the past 10 years and am glad to see there is some research and information and that I am not alone or crAZY.

sehorn said...

I have light pmle and survived a week on a boat with no problems at all. Here is what I did, hope it helps others as well.

1) Started taking beta caroten, heliocare, claritin daily a week before I went on vacation.
2) Took the above trio daily during my vacation.Somedays took them twice if I was under sun for too long.
3) Used vichy 50 + sunblock which contains mexoryl.

I didn't cover my arms or legs during the day. Above methods pretty much handled everything fine.

Anonymous said...

I am mid 40's, started to get this rash last spring and got it again yesterday (in October; so much for the "worse in summer" idea). It is absolutely worst on my face -- chin, cheeks, jawline. I was wearing big sunglasses and a hat, and 100 spf, so this admonition about wearing sunscreen makes absolutely no sense to me. It happens with our without it. I always thought I was allergic to the sunscreen. d'oh! My face hurts, itches, feels taut, and if it's anything like the last time, will take at least a week to heal. Fabulous. So to those who think it's not on faces, not true. Just wear sunscreen? not necessarily. (and yes, the sunscreen had A and B protection, it was from my derm!) But since it doesn't happen every time i'm in the sun, it's hard to know how to avoid getting it. I did discover that using a makeup brush to coat with a moisturizing foundation did not hurt or make it worse (so I could go to work today!) Thanks for all the comments and experiences. Very helpful. Can't believe it's one in ten people who get it -- I've worked in healthcare for 20 years, grew up in LA, and never heard of it before. blech.

Anonymous said...

I am 21 years old and I have suffered with PMLE since I was 14 although I was not diagnosed until last year when I was at my worst. For the previous 6 years, I would just take a Zyrtec or Claritin 30 minutes before going out and I would be okay. However last summer, it seemed as if my body had finally become immune to the antihistamines and they no longer worked. I even up'd the dosage to 2 a day instead of the 1 - nothing. I then began to take benadryl despite the drowsy side-effects - nothing. It got so bad that I would get a severe reaction just walking from my house to the car. I finally went to an allergist AND a dermatologist and I was diagnosed by both with PMLE. I was in tears. The dermatologist prescribed me Hydroxyzine 25mg and to take 1-2 before I go to bed because they are stronger than benadryl and they basically knocked me out like a horse. And still nothing.

I am the only person I know with this condition. It drives me CRAZY when people laugh and ask, "You're allergic to the sun? Have you tried sunscreen?" NO?? REALLY?? SUNSCREEN? HOW COULD I NOT THINK OF THAT?! Oh wait, I did think of that, before I waisted money on doctors and drugs. Even SPF 100 did not work.

I would not wish this.. disease? disorder? curse? I don't know what to call it but I would not wish it on my worst enemy. However I do feel a little better knowing that I am not the only one out there. Its January know and I definitely want to try to find something that works before Spring since it starts pretty early for me. I definitely want to try this HelioCare that a lot of people have been mentioning. I know people say the best way is to spend a little time in the sun day by day, but I don't want to put myself through the pain. Its like someone telling you that you can become completely inflammable if you lay down in a pit of fire for a little while every day. Yes, the thought of being inflammable would be amazing, but how could you knowingly put yourself through that kind of pain? I know it sounds dramatic but there really is no difference.

As I said before, I have a very severe case of PMLE, so if anyone knows of any hardcore meds I could take or treatments that insurance actually might cover, that would be great.

Best wishes to you all! And good luck!

Unknown said...

Aloha everyone,

This blog is just what I needed. I've battled with PMLE for the past 4 years now. I was officially diagnosed with PMLE this last summer. Before that it was driving me nutso not knowing what was going on. I'm 47, grew up on the Southern California coast and never had this issue before. I am getting ready for my annual Maui vacation coming up in March. I'm so thankful for all this information you have all shared on here. I will give it a try for sure.

I would like to share with all of you what I've learned from my Dermatologist. He told me that starting a month before my trip to Maui, to take 8-10 Beta Carotene a day until my palms turn orange, then back it down to 4-5 a day. Seems like an awful lot of Beta Carotene, but I suppose it's better than an eruption in Maui :). Also, as for sunscreens, he told me to use Aveeno,Blue Lizzard, or Neutrogena-Ultra Sheer and that they all should contain avobenzone or zinc. He did also tell me that the amount of SPF is not the issue, whether it's 10-50 spf does not make any difference.

I was wondering since I no longer live where it's sunny all the time in the winter (Oregon) and I'm going to Maui in March. What do all of you say about going to a tanning bed a few weeks before my trip to get some color. I've done it before, but a little leary now. Any suggestions would be very helpful.

This blog is a life saver. I will be following it from now on.

Many Mahalos,
Kelly

Anonymous said...

Like most here I developed PMLE in my twenties. For the most part mine has been manageable but now my daughter has a very severe case. After trying everything from steroids to stronger immune suppressants, beta carotene, light therapy etc, etc nothing was working. Her skin was acute most of the time and never free of rashes. This started when she was three and after two years of no reprieve in desperation we tried Thalidomide. It has worked extremely well for two years. We have now moved to the USA and I am unable to get a prescription and we are almost back to square one. You would have to be quite severe to take Thalidomide but if desperate, it indeed works.
I'm going to put her on Claritin, niacin and beta carotene and get hold of some Heliocare and see how that goes. Will update with results.

Anonymous said...

Has anyone with chronic year round eruptions had any success with any of the possible treatments?

Anonymous said...

Love this! I have never been able to get an answer from the Doctors. they always say it is a burn/sun poisoning. The give me a steroid shot an a 10 day steroid pack. I have been struggling with this since I was a kid, but it has gotten worse as an adult. It starts on the tops of my fingers and toes, covers the hand and works up the forearm. It doesn't really itch, it just BURNS. I have found that taking Zyrtec keeps it manageable.

Anonymous said...

Joseph's Mommy---
My 3 year old was just diagnosed with PMLE today. From the littler reading I have done so far I understand children especially males are the least likely to get this. Bought him a long sleeved UV shirt and am working on other things like sunglasses. Anyone know if I can get a Toddler hat with UV protection? Anyways, thanks for your ideas-they were very helpful.

Anonymous said...

Hi, I have had PMLE since I was 8 years old. I am now 35 and it seems the older I get my breakouts are smaller and confined to only 1 or 2 areas. As a child I would break out all over my body. I can remember crying because of the itching and burning. Currently, I have breakouts on both my hands and a new symptom; joint pain isolated to the breakout areas.
I have tried the Heliocare in the past and it works wonderfully but it is expensive. My family doctor & dermatologist do an ANA blood test every year to check for Lupus. PMLE is an autoimmune disease NOT an allergy. This year my ANA came back positive, so we did a LUPUS blood scan. Praise the Lord it came back negative!!
Through the years I have found that ice packs help with the inflamed blistery patches and the itching. My dermatologist has a list of "drugs" that he prefers me to take instead of the Heliocare. (Plaquenil, Hydroxyzine, benadryl at bed time and a VERY strong perscription strength cortizone/steroid cream.) As a child I took these medications year round to avoid or treat breakouts. Since I became an adult, every year I do my best to AVOID taking any of them because of the side effects. Unfortunately, I could not afford the Heliocare this year and I am now paying the price. So far this year the breakouts on my hands were are so severe that I had to start taking Plaquenil, hydroxyzine, benadryl & topical ointment again. All three of those are covered by my insurance. I consider myself a PMLE survivor having lived with this dreaded disease for 75% of my life and I highly recommend Heliocare to ANYONE with PMLE! For those who cannot afford Heliocare but have good insurance, find a GOOD dermatologist who is knowledgeable about PMLE, have your ANA levels tested yearly, try using ice packs on your breakout areas, get a good topical ointment or cream form your dermatologist, and take the Plaquenil......it does have a few ill side effects but it is worth it to ease your suffering from the PMLE. I KNOW BECAUSE I HAVE BEEN THERE AND I AM THERE NOW!
~Robyn Gates (Linberg)
Look me up on facebook if you also suffer from PMLE. :)

Donna said...

Leaving later this week for 9 days in the islands. Starting taking heliocare 3 weeks ago along with 2 beta caritene and 2 niacin (non flush) twice a day. Also take 1 24hr zyrtec in the evening. Found sunscreen (spf 15) with parasol. Wish me luck. I hope this works!

Anonymous said...

Hi
I posted on Feb 14 re my 10 year old daughter - so update. Tried 1 x heliocare, and Zyrtec it helped but did not stop the flares - although they were shorter and less severe. Since then have found a new chiropractor who recommended a full vitamin and mineral supplementation along with adjustments. She is taking the Anabolic Essesntial Nutrition pack (see anaboliclabs.com) plus 2 Heliocare per day. The multi vitamin/mineral is a high dose plus D3 + fish oil + magnesium.Just before seeing the chiro my daughter suffered her first migraine which to me made sense that she must be having problems absorbing nutrients. This may be premature but after a few weeks it is MIRACULOUS! Given the years of extreme rashes my daughter has suffered, it is hard to believe that nutritional supplementation could not only help but seemingly completely cure. Further research shows that vitamin D deficiency is very common in allergy/autoimmune conditions and given the importance of sun for vitamin D it stands to reason that you would need to supplement if you are avoiding the sun. Also the RDA is extremely low - set to prevent rickets basically so most people benefit from much higher levels.My child that shreds her skin night and day has not so much as scratched once for weeks. I also changed my attitude towards it, instead of constant concern (negative thoughts) I have handed ownership to her and I only now say positive things - not even anything precautionary. What can I say. It is working!

colleen said...

I first got pmle in my teens when I spent a summer in Florida. I always called it sun poisoning but thanks to the Internet found out what it really is. The funny thing is that on my forties I was diagnosed with Graves disease, a form of hyperthyroidism. After being successfully treated for this with methimazole my pmle left for three years. This year it is back so I'm going to have my thyroid levels checked. Has anyone else with pmle had thyroid problems?

Anonymous said...

Suffering from PMLE for 40 years and the only and I repeat the only things that have ever worked are #1 a kenalog injection and a slow process of getting a tan. Sunscreen only makes it far, far worse for me on my shoulders and chest.There is no cure for it and I am not so sure the sunlight is actually causing it. In fact I firmly believe that stress plays a huge role in this plus allergens in the air. Good Luck!

Anonymous said...

Thank goodness I've found this blog, what a lifesaver. I started with PLE when I was 50 (i'm 60 now) and have found nothing that helped, all I've been able to do is treat the rash with Eurax anti itch cream. In reply to Colleen's comments my PLE seemed to start at the same time I was diagnosed with hypothyrodism. I take 125 mcg of thyroxine a day which deals with it well but has no effect on the PLE. I'm off to Spain on holiday in 2 weeks, and am going to start the Claritin/Betacaroten therapy now and find some Heliocare before I go. Fingers crossed!!

Deplume said...

LOL - Ever had it misdiagnosed as SCABIES? I have!! I'm in the UK, and I've had this since I was about 12. I used to think it was grass allergy (I always got it after doing P.E. outside) Then I went to Malta, and Tenerife over the course of two summers in my mid to late teens, and it was awful. I lay there at night weeping, or spent my time stood in a cold shower. I blamed the sea, the sand, the sun cream. It never occurred to me that it was a sun allergy.
Back in the UK, and for FOUR YEARS RUNNING my allergy was misdiagnosed as Scabies. Seriously. Scabies. ffs.
I went on holiday to Gran Canaria, and thats were a Canarian pharmacist told me in broken english, exactly what I had. She gave me some cream with calamine in, which soothed it, and some sunscreen for very sensitive skin with UV A+B protection.
It didn't solve the problem, but it helped.
Now, a few years on, and I;m sitting here with burning skin, covered in red lumps. (Too much sun yesterday)
It still hurts, but I'm learning to ignore it. Things that help include; building up a gradual tan, calamine, piriton, icey showers, vitamin E creams.
There is an unexpected upside to all this.. As a bit of a goth, having a genuine allergy to the sun gives me major GothPoints™ XD XD XD

Donna said...

Used Heliocare, betacarotene and zyrtec for 3 weeks before vacay and then during along with Banana Boat Ultra Defense SPF 30 and then 15. Worked like a miracle. First time in years I didn't have the bumps.

Sam said...

I've been suffering from PLE since I was about 12 (that's the first time I remembering being very red and itchy after being in the sun all day, with the symptoms taking a few weeks to fully go away). My mother suffered from the same condition for a period in her life, but she has been fine for the last 5-10 years now. All my life I've tried to avoid going to really hot sunny countries, however in recent years I've been traveling broad at least 2-3 times a year, and sometimes it's unavoidable, especially if I'm going away with a group of friends. In 9 days time I will be flying off to Vegas, LA and NY and to be honest I have been dreading the thought of being in the sun! I've been doing a lot of research over the last few months and have taken on board a lot of other peoples experiences and comments. So in the last 4 weeks I have been taking a daily cocktail of Betacarotene, Niacin, Loratadine, Lycopene and Heliocare Ultra D, HOWEVER I've found that every time I take the mixture I take a reaction to it and my entire body, from my head all the way down my legs go bright red and very hot, this lasts about an hour or so, has anyone else found this???? I have to say my reactions are much milder and I recover quicker too. I also use Vitamin E oil on areas that have been affected. Having read the previous comment re. Anabolic Essesntial Nutrition pack, I have ordered myself some and see how it goes - I am willing to try anything!! I've also stocked up on the La Roche Posay 50 melt in sunscreen, feels really nice on, not sticky at all. Will keep you updated, and will post again once I get back from my holiday at the end of June :)

Donna said...

I thought I posted this last month but something went wrong. Anyway, finally got to go on our Caribbean vacay this year. For a month before I used Heliocare, betacarreten, zyrtec and niacin daily. While on vacay I used the same but took another Heliocare in the afternoon. Lo and Behold - no rash. I also found Banana Boat Sport Performance Faces UVA/UVB SPF 30 with 3@ avobenzone. I used it on my whole body. Now I have to admit that I ran out of my Heliocare on the next to last day and did get a very few bumps on my back, but nothing like the total body coverage I usually get. I'm continuing with the Heliocare whenever I know I'm going to be out in the hot sun for an extented period of time (use 2 a day). No bumps at all! I'm also now on the lookout for Banana Boat ultra defense broad spectrum SPF 15 that has 3% avobenzone. May have to order online. Hope this helps!

Anonymous said...

Thank you so much for this information! I have been suffering from this for five years and have changed everything i could think of like shampoos, soaps, lotions, and everything else u could think of that I thought I was allergic to! I just found out that my rash finally had a name! This information is very help full I will be buying all the products u mentioned and let u kno how it works.. I do believe ur my angle!!! Lol!!!!

shopgrrrl said...

This is the first time I've seen this blog, after sporadically researching PLE for the past 10 years. I've had PLE for about 20 years, but only figured out what it was about 10 years ago, and had it officially diagnosed by a dermatologist 8 year ago. Here's what has worked and not worked for me (I get the hives primarily on my upper body/arms/hands, and also along my hairline in recent years. Legs/feet usually only get minimal hives, but I've been so careful for so long that I don't know what would happen if I let them get more exposure).

1) Dermatologist recommended an expensive sunscreen (Avene), and it made no difference.
2) Dermatologist and fellow-PLE sufferers recommended allergy meds such as Claratin and Benedryl, but they didn't help me (I used those in conjunction with the special sunscreen, but no other supplements)
3) Naturopath recommended high doses of fish oil, as well as regular doses of beta carotene and quercetin, which I start at least one month before a Caribbean holiday. This seems to lesson my symptoms, but not eliminate them. Still, it was enough of an improvement that I've continued this routine for several years now.
4) A long sleeve UV swim shirt has become part of my normal beachwear, and completely prevents the hives on my upper body (still get it on my hands, not willing to wear gloves!). This is by far the cheapest and most convenient solution--I no longer have the patience to try to slather my upper body with sunscreen. Of course I still put normal sunscreen on my face and legs, but I find my upper body the quickest to get the hives. I have long board shorts I wear if I will be in the water for hours, and long skirts if I am walking around/lounging.
5) If I do get hives due to carelessness (e.g., spending 30 minutes outdoors in a v-neck t-shirt), I apply Paula's Choice Skin Relief Treatment, and it really helps to tone down the hives. Much more effective than the steroidal cream my dermatologist prescribed, or any other anti-itch remedy I have tried.

I've been reading about Heliocare for several years now and would really like to try it, but it doesn't seem to be easy to come by in Canada.

Anonymous said...

Wow i really didnt think there was that many people who suffer with as i do... I have always been a sun baby and never really had any issues till i had my 4th and final child and it was like he took everything outta my body that kept me healthy... lol i know that isnt true but that is what it felt like.. the very first summer after having him is when my FMLE started and sometimes it is almost painful... i loveeeee being out in the sun and sometimes it just kills me.. i'm glad to find out there is over the counter treatment... I have always had to go to the doctors and get steroids which work but the down side is i always gain alot of weight... so i will be trying some of these and will keep you posted on my recovery i hope...

Anonymous said...

Thanks for your page! In the past I have had what was referred to as sun poisoning and it was itchy, mainly on my back. After that no issues, and I used tanning beds and then was in Miami for several days getting darker then I have ever got laying out in the sun for several peak hours. Now this year the insides of my elbows have got a nice rash and bumps surround after tanning for 30 minutes per side with SPF 50. So I'm trying everything to get my body to stop the reaction. Added a little rash in my armpit area today, the complete rest of my body is just fine. The main thing that has changed is my bodyfat percentage has gone down--toxins from that past stored in the fat seem to be causing other things too. I hope to have decent looking arms again soon.

Anonymous said...

Topical vitamin E has been linked to skin cancer...check out the sunscreen recommendations from the environmental working group:
http://breakingnews.ewg.org/2012sunscreen/

pharmatechie@hotmail.com said...

Dear Lindsey and All,

Thanks for this blog! I am doing research on application of natural creams that have high possibility of preventing PLE completely without side effects that steroids have. I am trying to create a focus group to understand this condition better. Your time on this would really help...

Could I request you to send me your mail ids on pharmatechie@hotmail.com with "Blog - PLE" as the subject and we can take it forward...

I am open to any other suggestions if you may not want to share your mail IDs.

Together, we could be looking at a safe and permanent cure!

pharmatechie@hotmail.com said...

Dear Lindsey,

I am based out of UK and my team and I are working on a new product that could help the skin function better so as not to react to external stimuli, something thats a bang on solution to PLE. This would be non steroidal and completely safe, and has proven efficacy at lab scale. Can you please help us get some first hand information being a person who has suffered from PLE?

Would be great if you could share your mail id and also if you could get your friends from the blog involved...it would be a short survey I promise.

Please let me know if you'd be more comfortable to have a facebook group or something similar organised for this.

Having suffered from this painful condition, I hope you'd want people get a permanent and long lasting cure to this...

Pease mail me at pharmatechie@hotmail.com.

Thanks a ton in advance!

Jackie McG (Glasgow) said...

Hi

Just to add to my previous post, the beta carotene tablets are 15mg and when I was on holiday I took 1 heliocare tablet in the morning and 1 four hours later. Also, the main thing is my heliocare sun cream was SPF 50 and I still got a lovely tan. Thanks to this blog for all your help.

Jackie xox

Lindsey Brodsky said...

I accidentally deleted Jackie (McG) Glasgow's fist comment ... here it is:

Hi

My name is Jackie and I am just back from 2 weeks in Florida (from Scotland). I get pmle rash on my chest and it's so embarrassing and unsightly. This year I stocked up on a few things from reading your blog and I didn't get any rash which is amazing because the sun is so hot in Florida.

Here's what I did:

2 weeks before my holidays I started taking heliocare tablets, 2 beta carotene tablets and a vitamin supplement with c,d,e and selenium. I continued taking these while on holiday and also used heliocare sun cream. I also made sure that I did not burn. I did not get any rash and I was over the moon. Hope this helps fellow sufferers.

Good luck xxx

Anonymous said...

My daughter developed her first rash last year. She was only 1 and a half years old. She broke out again this year. Are any of the solutions posted here safe for todlers?

Anonymous said...

Hello all,
I have PMLE badly, my mother has it as well. I cannot be in the sun at all with out getting the worse rash ever. It's getting worse too now as I get it on my feet hands, arms, face , head and chest. It's spreading like a fire and is Soo itchy and burns. I'm goo to try all the suggestions above as I am at my wits end In pain. I even wear long sleeve shirts and hats and sit in the shade and still I feel it.

The hilocare pills and the Claritin d sounds great for starters I may head to urgent care and see if they sell the hilocare pills. Thank you for making this blog, it helps to know I'm not a crazy person, most people do not believ me Untill they see the ugly rash and the. They say you need to use higher sunscreen!! Which is not true. Ause iv used 100 SPF and it still does not help.

Thank you all for your help

Unknown said...

Interesting reading all these posts, as I was amazed to find that my condition is NOT prickly heat rash as I assumed it was.

My symptoms have reduced by about 80% since I discovered Riemann P20 Once a Day. Its a clear glue like liquid that you only need to put on once - 15 mins before long sun exposure. Its also very water resistant. Its sold everywhere at the UK airports and is also available on ebay. I am not saying this would work for everyone, but it lets me tan without burning. I never tanned before using this. The slightest burn, for me, will trigger the itchy red lumps on my neck, chest and stomach. I had tried every SPF cream /lotion, on the market till I hit on that, and I have never looked back since.

Traci said...

I have suffered from PMLE since i was 16 it was my first holiday abroad (spain) i had it everywhere except my face. It was so bad that we called a doctor in as i had this bumpy itchy rash and i didn`t know what was wrong. He gave me a cream which worked instantly. As you can imagine i kept the empty tube so i could take it to a UK chemist, but when i came home my mum had thrown it away and yep you guessed it ...that was also rubbish collection day!!!! i was devastated. I went to my docs and told me it was PMLE and there was no cure!!!!! Over the years i`ve gradually learnt to deal with it and fortunetely i now only get it on my arms and chest. The only thing i do before the attack is TRY to get out in the sun before going on holiday but for those who live in the UK will know that that is virtually impossible!!! So basically i start my hols by applying factor 30 everywhere then after 2 days gradually going down on the factors BUT still using 30/25 factor on arms and chest (thats the only place i get it now). I still get the rash but it is managable. Once i have the rash i then take antihistime tablets and put ALOE VERA COOLING GEL OR WITCH HAZEL GEL (also leave in fridge for better impact on the skin) this calms the itching down instantly. I have learnt to live with it but sometimes it does get me down. This is an excellent site and i`m going to try all you have recommended. Thank you for all your hard work in putting this site together....its so good to know i am not alone

Douzeper said...

I have been prescribed Hydroxychloroquine (Maleria drug) for PLE. Was a bit doubtful it would work but guess what? it has completely gone, I even risked one day without sun cream to just to test. Doctor prescribed one in the morning and one at night, as they have quite bad side affects I just take one in the morning and no more PLE :)

Anonymous said...

Greeting for Chilliwack BC 60 minutes from Vancouver Canada’s West Coast. I also have suffered from PMLE for the past 30 years. The first time it was noted was when I was 10 years old. I am actually one of the rare ones as I am dark skinned Native American (Haida Gwaii) female. The very first reaction I can remember was when a friend and I went to Cultus Lake she being very fair skinned her mother lathered lotion on her daughter but neglected to re-apply anything on me as she figured I would be fine as I had darker skin. Remember these where the early to mid 80”s all the preventatives that we have today regarding the sun where just not there. So we played all day in the water and of course I got severally burned. My mother looked at me in horror when I walked in the door that night (I was GLOWING DARK RED). Well the next day was another beautiful HOT sunny day. My mom lathered on the lotion and I went out to enjoy my day. Well I tell you the next morning I woke up and I had the worst reaction a person could imagine. Between the sunburn a reaction to the Paba in the lotion and now what was unheard of back then PMLE. My face had swelled... I had slits for eyes my lips where swollen inside out it seemed and I had this red bumpy ITCHY rash all over my body, even where a bathing suit was covering me. My mother rushed me to the doctor. All my doctor could say was oooh Krystal..... oooh Krystal.... It was a sad sight :( So ever since then I have had this reaction to the sun and (Paba which I am allergic to now) you know what today is the 1st time I have actually seen a name for it. I have just dealt with it. A lot of you may think (CANADA) sun?? Yes we get a lot of sun in the South West Coast of BC and it gets very HOT and very humid here. Today actually it is 88 degrees not including the humidity. So when you have an itchy rash to deal with it just makes it that much more un bare able. Over the years I have taken Claritin for the itch and swelling. Ice packed areas of my body to take the heat out of the rash & cold showers. I have always used SPF 60 and I still tan with this on. I have even enjoyed owing 3 convertible cars (people always thought I was nuts because I have a sun reaction) But you know what I think it actually helped a little because when the sun started appearing around in the spring time I would have the roof off and I would get little bits of sun exposure here and there over time. Well since having my daughter 7 years ago. I had to sell my mustang (because her car-seat wouldn’t fit in the back). I have noticed I have had a little more of a harder time with the sun.... huhhhh well there you go ladies we should all go buy convertibles LOL! Thank you for this sight!!! I will be trying some of the suggestions as I am heading South to Disneyland this September. Cheers :)

Anonymous said...

Greeting for Chilliwack BC 60 minutes from Vancouver Canada’s West Coast. I also have suffered from PMLE for the past 30 years. The first time it was noted was when I was 10 years old. I am actually one of the rare ones as I am dark skinned Native American (Haida Gwaii) female. The very first reaction I can remember was when a friend and I went to Cultus Lake she being very fair skinned her mother lathered lotion on her daughter but neglected to re-apply anything on me as she figured I would be fine as I had darker skin. Remember these where the early to mid 80”s all the preventatives that we have today regarding the sun where just not there. So we played all day in the water and of course I got severally burned. My mother looked at me in horror when I walked in the door that night (I was GLOWING DARK RED). Well the next day was another beautiful HOT sunny day. My mom lathered on the lotion and I went out to enjoy my day. Well I tell you the next morning I woke up and I had the worst reaction a person could imagine. Between the sunburn a reaction to the Paba in the lotion and now what was unheard of back then PMLE. My face had swelled... I had slits for eyes my lips where swollen inside out it seemed and I had this red bumpy ITCHY rash all over my body, even where a bathing suit was covering me. My mother rushed me to the doctor. All my doctor could say was oooh Krystal..... oooh Krystal.... It was a sad sight :( So ever since then I have had this reaction to the sun and (Paba which I am allergic to now) you know what today is the 1st time I have actually seen a name for it. I have just dealt with it. A lot of you may think (CANADA) sun?? Yes we get a lot of sun in the South West Coast of BC and it gets very HOT and very humid here. Today actually it is 88 degrees not including the humidity. So when you have an itchy rash to deal with it just makes it that much more un bare able. Over the years I have taken Claritin for the itch and swelling. Ice packed areas of my body to take the heat out of the rash & cold showers. I have always used SPF 60 and I still tan with this on. I have even enjoyed owing 3 convertible cars (people always thought I was nuts because I have a sun reaction) But you know what I think it actually helped a little because when the sun started appearing around in the spring time I would have the roof off and I would get little bits of sun exposure here and there over time. Well since having my daughter 7 years ago. I had to sell my mustang (because her car-seat wouldn’t fit in the back). I have noticed I have had a little more of a harder time with the sun.... huhhhh well there you go ladies we should all go buy convertibles LOL! Thank you for this sight!!! I will be trying some of the suggestions as I am heading South to Disneyland this September. Cheers :)

Donna in St. Louis said...

I also think the PLE is due to having a severe sunburn. About 8 yrs ago while in Boca Raton, FL I went out in the sun after slathering on the sunscreen and burned like I never have before. Came to find out I didn't but on sunscreen but put on body lotion (same maker/bottle, etc). Ever since I have had PLE that drives me crazy. As posted earlier, this year before going to the Caribbean in April for vacation I started the Heliocare, caretene, niacin (non-flushing) and zyrtec regime. It was the most enjoyable trip I've had in years. I did get a small eruption on the last day when I ran out of Heliocare but it was a way small reaction on the top of my shoulders. I'm still using the heliocare a few times a wk or when I know I'll be out in the yard for extended time and I honestly have been bothered by the PLE all summer. The Heliocare is abt $50 for 50 but well worth it. Try drugstore.com they sometimes have it on sale.

twinlestar67 said...

I was 15 when I got my first eruption all over my face. My lips and eyes were so swollen and I was miserable on my vacation in Michigan. I didn't know it was the sun, because as a child growing up in Texas I played outside all summer long without any incidents.
I had reactions again over the years after a Sea World visit and a few beach outings. I started using more sunscreen but it made the eruptions worse. I thought the sunblock made it worse by clogging my pores. Now that I've read some comments I think perhaps my sunscreen had PABA in it. I avoid the sun all the time because a short exposure of 15 minutes can cause a flare up. I will try some of these suggestions. My goal is to take a trip to the Texas coast and maybe even a future honeymoon cruise. I'll keep you posted.

Treebee said...

I've had PLE since I had my second baby in 1983 and it's worse each year.
The GP and dermatologist are no help!
I found Imedeen tan enhancer tablets protected me during a holiday in Australia. They are expensive and are currently unavailable as they are being reformulated.
So after a sunny week in Norfolk I have my usual breakout on my neck.
I tried a hydrocortisone ointment which really eased the itching.
But now I have raw patches which are very unsightly and sore so I may have used too much.
I'd like to try Heliocare. Is it the tablets that are so effective or the cream?

Anonymous said...

Living in South Africa, doing garden design and having two cricket playing sons and a daughter that does athletics and hockey, I do not appreciate advice such as: "Just stay out of the sun". After my dermatologist recommended light therapy (22 sessions of 5 mins each of UVA treatment) at a clinic 30 mins drive from where I live and at a price I wasn't willing to pay, I experimented with a normal sunbed (UVA+UVB). The following regime works wonderfully: 6 weeks before a holiday at the coast I start with 2x10min sessions, then 2x15min, then 6x20min sessions. I allow my skin to recover for 3 days between sessions and if I do begin to itch while on holiday, I stay out of the sun for a day. This proved to be very effective when I know I am going to spend a lot of time in the sun. For the rash I develop (on my face!) in winter after attending an 'unguarded' sporting event, I am definately going to try the supplements mentioned above. Thanks for all the advice - always good to hear about other people's experiences. Daleen

Anonymous said...

I have had PLE for about 28 years and I fortunately found out early on that Claritin or the generic(Loratadine)is all that is needed. Here is the trick, although it says it is 24 hour, it's not really, so you take say 20MG the night before and then another 20MG in the morning. Also remember, some external lotions or even fruit juices can be a catalyst if they are on your skin and exposed to the sun. Lime juice is bad for me. Good luck out there!

Anonymous said...

Hi, I have suffered with PLE for longer than I care to remember! I have had so many different treatments recommended to me by doctors and dermatologists from creams to PUVA Light Therapy- the PUVA treatment did work but the whole process is very time consuming!
A couple of years ago I was told to try the Malaria Tablets Chloroquine (Avloclor). I have to say I was a tad scepticle but they have worked a treat!!! I take them twice a week for 4-5 weeks before I go on holiday and once a week when I am away. They work a treat! Rash still comes out but only a little. I am consious of a "sensation" but it is not itchy in anyway. They have transformed my life as previously my summers have been miserable.For any PLE sufferers, Please try!!

Anonymous said...

Wow I didnt realise how many of us suffer from this type of condition..I was only diagnosed yesterday from my gp after having thing condition for a very long time..are you able to subscribe to this page or do you have a fb as yours and your followers info concerning this condition has been very helpful to me and appreciate helpful pages such as this one..

Anonymous said...

I'm another PLE sufferer that is so glad to have found this page. I'm 35 and female and have been suffering with this condition for 7 years, since I was pregnant with my first child. After reading some other comments I wonder if there is a link between PLE and pregnancy (or hormone disruption). I live in Australia so avoiding the sun is impossible, and I'm currently suffering an outbreak at the moment whilst camping at the beach. It is HORRIBLE!!! I'm going to look into some of the combinations of supplements and suncreams as I do not know how available they will be here. I also wonder about my diet as I do not consume very much oily fish or other sources of Omega Threes and wonder about the ability to heal through diet improvement. Other sites sugggest a diet or lotions high in antioxidents may help. It would be lovely if any other Australians out there could share their knowledge of what Aussie products help.

Anonymous said...

Thanks so much for the site. My mum has suffered with this condition for over 25 years and living in Australia has made the condition a nightmare, especially for the fact that she can not get any UV exposure at all or she has a reaction that looks close to a 3rd degree burn. She has been on an anti- malaria tablet, but that really has had no affect for her. I had to jump online tonight and try to find some help for her, as she is currently sitting in her loungeroom with a massively swollen face, which is a combination of 10 minutes UV eposure and using a moisturing cream which has all lead to a horrible reaction. I have just stumbled across the Heliocare details and am going to be ordering some tablets for her. I really hope that something can give her some relief. So fingers crossed.

Donna said...

Anonymous, do try the heliocare and vitamins plus claritin. I went to the derm last month and told her about my success last year. She called me that night and asked me what exactly I used and I'm to report back to after our vacation this coming April. She even gave me a coupon for Heliocare (which she hadn't heard of before) and said to ask the pharmacist to order it if they don't carry. I've been buying mine on drugstore.com. Hope it works out for your Mom. I know how miserable she is.

kidsrn70 said...

I love following this blog. I have had this for 13 years now. I am 43. I am going to try all the antioxidants ,Claritin, extra vitamins this year. I also just joined a gym that has free tanning beds. I did try this 10 years ago but the long drive to the dermatologist wasn't worth it. I wondering if I am starting to early though. I live in pa. I stared at 1 minute three times a week for two weeks, then 1 min 30 sec, and now 2 minutes. Well today I broke in the rash. The tanning booth has UVA light bulbs, so I am hoping that is what the dermatologist had as well since I broke out in the rash. So now I am wondering do I just stay at two minutes or back it off. I know if I call the dermatologist they will tell me not to do this at the gym and come to them instead. I guess I will have to play around with it for a little. I do remember when I did it before at the doctor, I never made it past three minutes. Now I want to stock up on some good sunscreen for the summer. The best that worked for me was the European products with mexoryl. I can't believe it is still not approved by the FDA. What a wonderful product for us. I will continue to read this blog and get all the wonderful ideas that has worked the rest of us!

Anonymous said...

i was told i have PMLE, other dermatologists thought it was heat rash. A specialist prescribed me the Malaria tablets Chloroquine because i am going to florida in a month. Ive had PMLE since 2008 and its gotten worse every year. I have a tattoo sleeve on one arm which gets none or minimal rash because the black absorbs the uv rays. Should i take the tablets or try some of the products recommended here, really dont want to take pills for over a month.

Anonymous said...

I have suffered from PMLE for about 11 years now and it took 8 to diagnose. The anti-malaria drugs did not help my flare ups the last two summers. I discontinued it last summer due to reactions with it in the generic form. Also note insurance companies can raise your rate due to the prescribing of anti malaria drugs. I am going to try the Heliocare pills this summer and pray they help. We stay outside all spring and summer so I will try about anything to prevent having to stay out of the sun. The combo of pills and lotions helped to reduce the rash a bit last summer, the Ocean Potion sunscreen is wonderful but I had a hard time finding the one with parasol late in the summer. Good luck and please keep the info coming!

Anonymous said...

I have had pmle sine I was pregnant with my little boy 2 years ago. I tried every cream out there. Niacinamide works pretty good, but my dermatologist put me on prednisone (steroid) it has been life changing. I have almost no reaction from the sun, bbut it does make me feel hungry more often. I would also add i found that the off brand itch creams work way better than the name brand. So far I like walgreens brand the best. I hope everyone finds something that works for them.

Anonymous said...

I've had PLME since I was nine. As a nine year-old, it was unbearable. I found that since I always got it on my feet when wearing sandals, dipping my feet in ice-water and numbing them was the only thing that worked to relieve the horrible itch. I went on a vacation to Hawaii when I was a little older, and I got it badly for a week. Hands, arms, calves, and feet.

Thanks for the advice, it will help!

Anonymous said...

I've had PLME since I was nine. As a nine year-old, it was unbearable. I found that since I always got it on my feet when wearing sandals, dipping my feet in ice-water and numbing them was the only thing that worked to relieve the horrible itch. I went on a vacation to Hawaii when I was a little older, and I got it badly for a week. Hands, arms, calves, and feet.

Thanks for the advice, it will help!

Brandi said...

Hey, I just got PMLE about a year and a half ago (It seriously sucks). But my mom loves to research health and nutrition.

We found a book called "Clear Skin" by Nicholas Perricone. And my mom and I found that changing my diet had a large affect on my skin :]

(we tried it after I the symptoms appeared, and the first day it got worse but cuz it was detoxing, and after that first day it got increasingly better!)

(It basically said to take sugar, dairy and some types of grain out of my diet. However fish and cantaloupe is great).

Also we tried a vitamin C spray (Herbalife) and I just spray it wherever the rash is. It gives relief and makes the rash go away quicker.

Also their Vitamin C gel works wonders too!

^(For natural cures and remedies, once the rash breaks out.)

My mom and I are gonna go pretty soon to see a homeopathic way doctor soon, so if we find something we'll try post it :]

I'm so glad that there's others who go through this as well XD

Anonymous said...

First I would like to thank you for creating this forum for those of us that suffer from PMLE!

I promise I will try and make this short. I came across this blog a/b 2 weeks before going to Mexico. I started the claritin and allegro immediately. I ordered the heliocare and a sun block caller Piz Buin allergy 50spf. I also bought the vitamin e oil.

So while in Mexico I was so pleased 2 days into our trip no itchy rash or ugly bumps. I contiued with the regiment throughout the first 6 days and on the last day I had decided to use a regular sun block so I would get a little color but I con't with the v e oil, heliocare and allergy meds. Well sure enough the rash appeared right on time 2 days later!

I had planned to play with the regiment when I returned home but for me it seems the piz buin was the key since that was the only thing I changed!

I live on the east coast and spend my summers on the beach! After giving birth to my 2nd child in the spring of 2006, we spent the memorial day weekend at the beach! I started getting so itchy and had these red bumps/blisters all over. I thought at 1st maybe it was the sun block I was using, so I bought some different ones, nothing changed. I went to the derm and he told me, an olive complexion Italian who had spent the last 28yrs of my life on beach all summer every summer, I was allergic to the sun! He handed me a catalog full of sfp clothing and said stay out of the sun! So when I found something that actually helped me and worked. I could not wait to share this info and maybe it could help someone else!

So much for making it short!
Nicole

Anonymous said...

I am so glad I found this site. I am a fair skinned, Caucasian woman of 33 years old living in near Toronto. I have never had many issues with my skin aside from the usual teenage acne, but never a problem in the sun, except perhaps not enough sunscreen in my younger years. Last year I went camping with my family and I was very careful in the sun. I wore an SPF 60 and aside from beach outings, didn't spend too much time out in direct sunlight. When we returned home from our trip, about 3 days after my last sun exposure, I suddenly began to get weird hives on my arms. The next day they turned into thousands of tiny water blisters running up and down my arms, around my neck and on my chest, but nowhere else. I wasn't visibly sunburnt, but I just thought maybe my layer of sunscreen was too thin, or the sun was too strong. But over the next two weeks it went from blisters to excruciatingly painful dry skin, to everything peeling off and revealing a new and discoloured layer of super soft and super new skin. I spent the rest of the summer outdoors with no further occurrences and thought nothing more of it.

Recently we took a trip to the West Indies to visit family. The first few days were spent in Tobago and on the beach. I LOADED on the sunblock and stayed out of the sun during peak hours with the memory of my rash last year and doing all I could to prevent it from happening again. The next few days were spent in Trinidad and mostly indoors. Only one day was spent outside but again I was loaded with SPF 60 sunblock. There were even quips that I was going to return home with no trace of sun on my skin after spending a week in the West Indies. I DID NOT BURN!

Then, horror of all horrors, on our last night I started to get itchy on my arms. I had hives on my inner elbow. The next day, the day of our departure, I had blisters. Each time I scratched an itch, my fingers were wet from all the blisters popping. First they were in the middle of my arm and by days end, they were all over my arms, my neck, my chest. My face, legs, feet all had sun exposure but were rash free and super pale. My doctor doesn't seem to know much about what is going on with my skin because she is just a GP but did say it was an allergic reaction due to photo-sensitivity. I am awaiting an appointment with a dermatologist but I fear this rash will heal before I can get it to see them and get an accurate diagnosis. I have no other symptoms so I don't think it's lupus or something more severe. I don't want it to happen again because it hurts so much and is so insanely itchy! I have a six year old who loves to play outside and I am the only one who can take her outside to play. Telling me to stay out of the sun, or to wear long sleeves when going outside is not an option. In mid summer here it can get over 100F and wearing long sleeves in that is insane! Right now I am just waiting out the dry skin phase and waiting for it to peel off. I haven't been diagnosed with anything specific yet, but from the sounds of things, I think I too have PMLE. I cannot think of anything else it could be.

Anonymous said...

Hi Great site and very informative. I have been diagnosed with PMLE only today after around 12 monthe attributing it to many other conditions and reasons. The daft thing is being in the UK it is never very sunny anyway so probably a good idea I live here and not somewhere with a better climate :) Will start to take a look at the very informative advice. Affected area is across top of forehead and if I had a £ for every time someone says "Ooh have you been in the sun?!?!" I would be a rich man Grrrrr.Good luck and thanks again. Ed.

Anonymous said...

Oh my goodness. I am on vacay right now in bed with excruciating itching all over my upper thighs and on the back of my arms. I KNOW now that this is PMLE. I always got this in the spring and summer as a kid on my knees and elbows no dr could ever diagnose it. It kind of got better in my teens and twenties, then in 2006 on a trip to Hawaii I got this weird extremely itchy rash. I have gotten it every summer since. Like you guys no burn just rash. This itching is worse than any I have ever had. I have 3 more days here don't know what I am gonna do. I'm definitely looking for this Heliocare as soon as I get home. Should I start taking it as soon as this heals or what? Please help

Claire Knights said...

Hiya, I'm 34, live in the UK and have had PMLE for 8 years. its progressively gotten worse. The last two years I have had light treatment (UVB I think it its) through the NHS as it had become so severe (essentially I can't be in the sun longer than 30 mins without a severe bumpy rash that night anywhere that had contact with sunlight (this can be in a car aswell or through a window).

I have found PizBuin helps (factor 50) and its hard to tell if the light treatment has helped as I still have strong reactions but my neck (which used to be the worst affected) is now much better in the sun.

Steroids DO work - but you can't take them forever. I'm going to try Heliocare and caretene and let you know how I get on.

Claire Knights said...

I have PMLE and have light treatment for the last two years and use Piz Buin suncream - will try Heliocare and caretene and see how I get on (will report back).

Anonymous said...

I want to thank You for this blog. I am an Indian woman who travels between UK and India frequently for work . I use to get itchiness on my hands and neck alone when i am in India and doctors suggested to use Sunscreen lotion every 2-3 hours. I use to get black marks on my skin due to severe scratching. Applying sun screen lotion however didnt stop the issue. Last week a dermatologist suggested to take Ciplactin pills and apply Halovate on skin when irritation occurs which immediately cured the itchiness. I am not sure if it is safe to take this pill whenever irritation occurs. But i am relieved now...

Anonymous said...

PMLE can be caused due to exposure to Ultraviolet rays, rays from Laptop etc..Hence even if you are indoor and work long time infront of laptop, you need to take extra care.

Anonymous said...

I live in the UK and have suffered from this now for about 15 yrs and all I get from the Doctors is use spf 50+ and take allergy tablets ... I have also heard that PMLE is an immune disorder... was wondering if anyone else had heard this?

Anonymous said...

Thank you for the information. My 16 old son first presented with symptoms of PMLE when he was 18 months old. It took another 5 years to receive a diagnosis. We were told it was an allergy to sunscreen, baby wipes, the sun or heat rash. Ultimately, we moved to the western U.S. Living in a high desert his symptoms were intense and appeared in February. We located a dermatologist who ran a barrage of tests and finally diagnosed him with PMLE. They were perplexed about its origins, but traced it back to my American Indian heritage; it is well documented among American Indians. It was then, that I remembered having problems when I was younger. We now treat him with 8,000 IU of beta carotene, which we have compounded locally. It is very effective. We are always hopeful he will outgrow it so we don't begin treating until we see the first spots appearing. That means he could have some uncomfortable days, but we don't treat unless we first see symptoms. It may sound odd, but he actually made it to mid-June this year and there are some risks associated with taking Vitamin A. The medicine usually begins working within 3 days of beginning treatment. Until the beta carotene begins to work we treat the itching with Benadryl or other allergy medicine and treat the rash with a cortisone cream (use sparingly since cortisone cream can thin the skin). In addition, since beta carotene (Vitamin A) must be metabolized in the liver we have blood work done annually to be sure there are no problems. Like most of the other individuals commenting on this blog I don't have any formal training, but his health problems have lead us to do a great deal of research. Vitamin A can have adverse affects if not metabolized properly and especially on individuals who smoke or drink so be very careful when self medicating with any Vitamin A supplement. Good luck to you all!

Anonymous said...

omg, i am so happy *I found this blog, i just returned from Dominican Republic, and am covered head to toe's with the ithcy, hurtijng rash. This is my 6th year of going there, and 6th occasion of this outbreak. I always thought it was either something in the ocean water, or the sand, or the sun screenm or the hotels water system, this time I even took only baths with bottled water. I live in florida, and never get this sun rash here, only when we go to the Dominican republic. But then again, I only ever lie on the beach for hours when there, i do go to the ocean here, and to the pool, but its not for days in a row, or that many hours. I am soo glad i found this blog, I am going to try everything except the niacin, which I think i may be allergic to since i had a red flare up when I took it one time, and aso when I used a hair product that contained niacin as well. thank yhou all again, I can finally relax knowing what I have.

Claire Knights said...

I've been doing a bit more digging and I've found a research paper on diet and how it can effect pmle/hives. Last year my symptoms were minimal (even though hormones during pregnancy are supposed to make it worse) and from matching it to the paper, it could be due to not eating nuts, alcohol or chillis...am going to do an experiment with my diet and see how I get on next month...

Kelly Nunez said...

I have been experiencing PMLE since the age of 13. I had no idea what was happening all I knew was that I was breaking into hives and could not stop scratching, because it itched so bad. I never made the connection to the sun, because I had suffered from severe acne since the age of 11. I visited many dermatologists and none ever associated my problems with the sun. I even thought is was something I was eating, changed my diet a few times, still nothing. I was prescribed over and over again medications for eczema, acne and rosacea. I finally stop using this stuff after 10 years with no real relief. It was truly a nightmare! One day a got the mail and was wearing shorts, I was exposed to the sun no more than 3 minutes and at night the itching began. I finally realized it was the sun as the itching stopped right about where the shorts began. I immediately went to walgreens and found Aveeno Ultracalming Moisturizer with SPF 15($16). Tried it and my itching lessen,It calmed the redness and I healed rather quickly. Since then I use it daily and it keeps my episodes at a minumum. I will be trying out all the recommendations and will keep you guys posted! Thanks for sharing this information with the world!

Anonymous said...

I didn't read all the comments on this blog but thanks for so much information. I was diagnosed with pmle 2 years ago in mid thirties. I live near Dallas, Texas and it can get hot here. I have young kids and don't want to stay out of the sun. I recently discovered Neutragena with helioplex. It is AMAZING for me. I can go anywhere if I wear it religiously (every hour reapply). Even the water park with barely any shade in a swim suit! Also, after-sun aloe gel works to relieve itching and feels pretty good. Just thought I'd share my two cents. Good luck fellow sufferers.

Anonymous said...

Hi so grateful I came across this blog. I am in the UK and have had PMLE for the last 20 years. I am of on holiday to Spain soon and will be trying all the suggestions. x

Anonymous said...

Hi so glad I came across this blog. I am in the UK and have had PMLE for 20 years. I have just had an eruption that has now cleared up.I will be using the suggestions on this blog for the rest of the summer.

Claire Knights said...

The inclusion of both ecamsule and avobenzone in one preparation of sunscreen provides clinical benefit to patients with PMLE compared with sunscreens containing either ecamsule or avobenzone alone, each UVA filter individually. Does anyone know a sunscreen with both?

Anonymous said...

Hi, I got PMLE for the first time on my honeymoon in Mexico 10 years ago when I was 22 years old. I was eventually diagnosed and offered light therapy after years of tears and itchy, unsightly rashes and doctors telling me I should stay out of the sun and had "prickly heat". I love the sun and tan well and just couldn't accept that. Even taking my son for a walk in th British sunshine triggered the rash and the misery that follows. I eventually gave up on light therapy after 2 years of hospital visits 3 times per week and still no difference. I know how devastating the rash can be so I have read and researched everything I could find. I have ordered the Shirudo lotion for my holiday in August 2013 and pray it works in intense heat, but really wanted to tell people about "Blue Lizard" sensitive sunscreen. I used this last summer and didn't develop my rash until the last 2 days of my 7 day break in Greece. As you will know, the rash usually develops around this time, but also coincided with the fact I stopped using Blue Lizard on day 5, as I only had a small amount left, and chose to use it on my 4 year old daughter who is allergic to all sun creams I have tried apart from this one. I have used it again this year, and have only had 1 episode, which was due to the fact that I got overconfident and didn't apply the cream. It has been 28 degrees today (a rarity in England)! and after reapplying the cream all day, I have had a rash and itch free evening!!! I also use Rimmel sun shimmer wash off false tan on top of the cream as it makes you go a bit white, and I believe that this helps too, as it contains titanium. I never post on forums, but feel its my duty as I have suffered for 10 years and feel that there is little advice or support apart from helpful blogs like this. Hopefully this might help someone else x

lynda said...

Hi everyone,

Since my last post on 5th July the weather in the Uk has been great. I have started using Riemann P20 spf 15 once a day sun protection and taken 1 Benadryl liquid capsules 10mg a day. I am still a wee bit itchy but have not had an eruption of blisters yet. I have ordered the Heliocare capsules of Amazon but they haven't arrived yet.
Enjoying the heat wave we are having just now.

Suzy Parker said...

Hi, I am 28 and live in the UK and I have been diagnosed with PMLE this year, it went from a small rash to BAD very quickly! I had blisters all over my arms, red lumps all over my legs and chest. the main place i get it though is over my forehead and nose! As a one off the doctor gave me steroids to take for 5 days as i have a wedding to go to. Im still not sure if im going to take them or not, i will see how bad it is at the time, but as a short term fix apparently it clears it up completely. I am going to buy some Heliocare after reading the blogs on here and see how that goes....

Claire Knights said...

Hi Suzy, I'm 34 and from the UK and have had pmle for 6-7 years and just want to say that for a quick fix for wedding/once a year holiday etc TAKE THE STEROIDS...they work! I save mine for once a year occasions. Also, try http://www.eucerin.com/product-finder/sun-allergy-protection-sun-creme-gel-spf-50/7ac1ffe2ec79552b433b39b370fc088c/ and Helocare tabs (been using both for 3 weeks and are good)...hope this helps xxx

lynda said...

Hi everyone,

Looking for Shirudo Antioxidant Lotion I take it this cant be bought in the UK. I can only find it on USA web site and they are charging $40 to ship it over. Is there anything like it that can be bought in the UK.

Lynda

Lori said...

I am so glad that others have this as well. My doctor keeps putting me on steroids to clear it up. I feel like a freak because she just says to stay out of the sun. After reading all of the comments, I am not sure as to what to try for a prevention.

Anonymous said...

Hi, I last posted on 6th July 2013. We have been having a rare "heat wave" in the UK and I am pleased to say that my symptoms have remained minimal since regularly applying Blue Lizard sensitive sun cream and Rimmel sun shimmer, however I have developed the rash across the top of my shoulders/ neck. I have been trying to think of the reasons behind this. The main points that i can come up withare that I use hairspray and hair heat protection products which spray over this area. I have started putting a towel over my shoulders when I use them, in case they are reacting with the sun on my skin. I also noticed the rash developed after eating prawns? I know the rash is caused by the sun, but these points may be worth baring in mind as the rest of my body has been rash free. To treat my rash I have used "Dr. Organic" vitamin E body wash and "Dr Organic"Aloe Vera gel. The gel makes the rash redder on first application, but definitely helps it heal more quickly. I bought both products from Holland and Barratt. So far this year I have been exposed to more sun than usual, but I have suffered less than ever. I don't know if this is due to my heightened awareness and more regular application of sun cream, but I keep my fingers crossed that it's easing over the years and may one day go away! Also, I wanted to mention that I was advised at the hospital that steroids work, but should only be used on one off occassions as if you ever need them in future for a serious medical condition, they may not work when they are really needed x

Douzeper said...

Hi, like previous poster I am also currently bathing in the UK heatwave, I last posted to say I had been prescribed malaria tablets, they are still working, but now that we have had a few weeks sunshine I have been able to test a few theories. I suspected my PLE got worse once I started using sun cream, so I just took the tablets, then after a couple of weeks of sunhine, being careful not to get burnt but still getting a tan, I started using sun cream, next morning full blown PLE. Stopped the sun cream straight away and the PLE has gone again. I read on the net that it can aggravate it, it seems that it does.
The malaria tablets quinel do work for me, I do not like taking them and try to get away with one a day rather than the prescribed two, but thw two a day does work better in bright sunshine.
Regards, Ally

lynda said...

Hi Douzeper,

I have always had the feeling that sun creams make PMLE worse, because it clogs up your pours and your skin cant breath and the heat gets trapped. I used a great sun cream years ago that was a mousse and it seemed to work great because it didnt lie on top of your skin. I have just found it was called Bergaderm it was discontinued and is now called Proderm Sun Mousse. Here is a link for it http://www.amazon.co.uk/Proderm-Sun-Mousse-SPF-30/dp/B001I24Y38

lynda

Anonymous said...

Hi, I am also writing form the ‘heatwave’ in the UK. I suffered for years with this problem and everyone including doctors putting it down to ‘prickly heat’. I tried every remedy I could find including beta carotene, some tablets recommended to me that I bought from Holland, homeopathy, you name I tried it. In desperation I took some photographs of the problem while on holiday in 2008 and took these to my doctor on my return. He thankfully referred me to a dermatologist consultant at out local community hospital. As soon as I showed the consultant the photographs she knew exactly what it was, to my relief. She said that the way they normally treat the condition is with light therapy but because I had a dodgy mole off my back in hospital they could not treat me with UV. I am very careful in the sun and wear a high sun factor on holiday so as not to burn. She then prescribed me steroid tablets to take (prednisone) which I take four 5mg tablets two days before I go on holiday and 4 tablets on every day of the holiday and they work! I can now enjoy my holidays without any worries about rashes. I have not had any side effects at all too. My doctor is happy to give me a repeat for when I go on each holiday as they are just used sporadically. I also use a high factor Boots Soltan sun tan lotion which is fine too. The dermatologist consultant I see at Addenbrookes for my mole checks every year, said to only use sun lotion with the 5 star logo on the container which indicates the best protection for UVA and UVB, he recommended Uvistat or the Soltan range. I prefer the Soltan range as it is light on my skin and I never burn.

Now back to the UK weather which is forecast for 30 degrees where I live today, I have recently been on holiday to Turkey for one week and took the tablets as described above, with no problems at all. When I came back I stopped taking them and I am glad to say even though I have been sitting out in the sun here I have not suffered from any PLE (touch wood!). I think my skin must have hardened to the sun whilst in Turkey and is not reacting how it usually would.

The other information I read is that when a woman reaches the menopause this can also stop the condition occurring, I am in the peri-menopause stage (ie night sweat symptoms, lovely) at the moment and I have just started taking HRT so fingers crossed this information is correct too.

Good luck fellow sufferers, I know it is awful and really spoils enjoying the sun, but do try the steroid tablets if you can use them every now and again.

Douzeper said...

Hi Lynda,
Thanks for that, unfortunately it says Currently unavailable. I'll have a look other places. Thanks :)

Lori said...

Hello everyone. I have decided to stop taking the steroids my doctor prescribed. Enough is enough. Anyways...I live in Pennsylvania and enjoy the summer months and this suffering ruins everything. I have a boat, that just sits at the dock, and a summer camp on the river which leads to many hours in the sun. I am on my third round of STEROIDS to clear up my skin and have had enough of taking them.

I spent all day yesterday looking for the Heliocare and found it at Walgreens. 4 other stores did not carry it. I was getting frustrated.

After reading "Donnas" suggestions I have purchased the following: Heliocare, Multi-Skin, hair, nails, beta carotene 15mg, niacin 100mg, sunscreen with helioplex (neutragena). I have also ordered the Shirudo lotion.

I am somewhat concerned about taking too much niacin and beta carotene due to side effects. Does anyone know if the milligrams I am using is TOO MUCH?

QUESTION: Those of you that are trying the supplements, Do you take them everyday or only when you are going into the sun?

Thanks for everyones help! I am hopeful!

Lori said...

Right now in Pennsylvania it is around 92 degrees. My DOGS love laying in the SUN! This tells me that there are benefits to the sun.

I have two English Mastiffs that hate the heat (185lbs). I was watching them today laying in the sun and it occurred to me that they are doing it for a reason.

Some research and they say that is how dogs get their vitamin D. Hmm Hmm Hmm

Well I live in a 4 season climate, therefore in the winter I am not exposed to the sun, rarely. As well as the spring and fall.

I am wondering if PMLE or other sun rashes could be associated to not enough Vitamin D, meaning we may need more, or lack of Vitamin D naturally due to the lack of sun in the fall-spring.

Anonymous said...

Hi, I am also writing form the ‘heatwave’ in the UK. I suffered for years with this problem and everyone including doctors putting it down to ‘prickly heat’. I tried every remedy I could find including beta carotene, some tablets recommended to me that I bought from Holland, homeopathy, you name I tried it. In desperation I took some photographs of the problem while on holiday in 2008 and took these to my doctor on my return. He thankfully referred me to a dermatologist consultant at out local community hospital. As soon as I showed the consultant the photographs she knew exactly what it was, to my relief. She said that the way they normally treat the condition is with light therapy but because I had a dodgy mole off my back in hospital they could not treat me with UV. I am very careful in the sun and wear a high sun factor on holiday so as not to burn. She then prescribed me steroid tablets to take (prednisone) which I take four 5mg tablets two days before I go on holiday and 4 tablets on every day of the holiday and they work! I can now enjoy my holidays without any worries about rashes. I have not had any side effects at all too. My doctor is happy to give me a repeat for when I go on each holiday as they are just used sporadically. I also use a high factor Boots Soltan sun tan lotion which is fine too. The dermatologist consultant I see at Addenbrookes for my mole checks every year, said to only use sun lotion with the 5 star logo on the container which indicates the best protection for UVA and UVB, he recommended Uvistat or the Soltan range. I prefer the Soltan range as it is light on my skin and I never burn.

Now back to the UK weather which is forecast for 30 degrees where I live today, I have recently been on holiday to Turkey for one week and took the tablets as described above, with no problems at all. When I came back I stopped taking them and I am glad to say even though I have been sitting out in the sun here I have not suffered from any PLE (touch wood!). I think my skin must have hardened to the sun whilst in Turkey and is not reacting how it usually would.

The other information I read is that when a woman reaches the menopause this can also stop the condition occurring, I am in the peri-menopause stage (ie night sweat symptoms, lovely) at the moment and I have just started taking HRT so fingers crossed this information is correct too.

Good luck fellow sufferers, I know it is awful and really spoils enjoying the sun, but do try the steroid tablets if you can use them every now and again.

Lori said...

Hi! No BREAKOUT! I have been using the Heliocare, Hair Skin and Nails, Betacarotene....And the SHIRUDO lotion under my sunscreen (Neutrogena with helioplex).

In the past week I went boating two times (4-5 hour trips), bicycling daily and it has been around 90 degrees.

My skin looks great, no breakouts! I even got some sunburn due to wearing a different bathing suit.

Typically I get the rash when boating due to the intensity of the sun, but I have been taking the supplements with the Shirudo cream and NO RASH!

Anonymous said...

I have recently been diagnosed with an extreme case of PMLE. I break out in the itchy rash and blisters all year long, in the shade, upset stomach, etc... Heliocare is my lifesaver. I don't want to take anti-malarial for life, but after taking Heliocare everyday I can go outside without sunscreen or bundling up in clothing for about 5 min without any reaction. Thank you so much for this blog. Now I have some other natural options to look into and don't feel like a "vampire".

Ines said...

I've had these sort of skin reactions ever since I was a child. Until a while ago, I thought it had to be some kind of heat rash, but the reaction has been getting worse ever since I have started working (I'm an archaeologist, so I spend a lot of time in the sun). I have a very fair complexion and I have really never enjoyed sun bathing or any kind of sun exposure, for that matter, since I find the hot weather to be quite unbearable. I really never know what to do when the rash erupts, but I tend to stick to cool stuff and to damp, cooled, towels.
It's really annoying and I get to be really quite ashamed to get out of the house when it happens, mainly because, in my case, the face is also affected, as well as my arms. This is getting a bit out of control, since I live in a very sunny country... My ultimate option is to become a vampire hermit. That might do the trick. :)

Anonymous said...

Hi, I posted on 6th July and 14th July. I have just returned from a 7 day break in Greece. I managed to get my hands on the Shirudo cream (after my American friends brought it back from the US for me). I am gutted to say that after applying it regularly and religiously, I still developed the rash. I am covered in the horrible rash and devastated that it didn't work as I thought this could be the answer. I also have the rash on my forehead and lips for the first time ever??? I am going to the doctors this afternoon to see if he will prescribe steroids as I have read in this blog that they can clear the rash up? I'm also going to see if I can have them next year while I'm on holiday. I just pray that this works. Any comments about steroids would be appreciated as I hate the thought of taking them. Thanks x

Anonymous said...

Hi, I'm 18 and from the U.K, I've just stumbled across your blog when doing my own research on PMLE, as I have just newly been told I have it. Like you, I love the sun and hate the idea of not being in it. I also tan really well and have never burned from the sun (even in foreign countries) so I'm not entirely sure why it has suddenly appeared. It causing me a lot of grief as it causes some of my joints to swell, which in turn has stopped me from being able to handwrite things, which is a complete pain in the ass (excuse the language) when I need to be able to write at work, and seeing as it is a one person job it is really quite difficult to do when you can't write. Any thoughts on how I could prevent it from getting quite that bad would be a great help. Thanks. X

lynda said...

Well just come back from a week in Benidorm, I took 1 10mg of Benidryl liquid capsule, 1 Helicore capsule and 1 Betacarotene capsule every day I used Riemann P20 sun protection and no PMLE i am so chuffed. I still got prickly heat but was able to manage that with some cream bought from a chemist in Spain that eased the itching. Thanks to everyone for their tips and suggestions.

Lynda xx

britt said...

I'm 21, white but tan extremely easily, and I spend a lot of time in the sun, and rarely burn. I have found a lot of this to be helpful. I have only gotten extremely sensitive to the sun these past two summers. I never burn, just get itchy hives on my face, chest, and arms. Its annoying, but I manage with creams. Just out of curiosity does anyone suffer from UTI's or canker sores?? I get both quite frequently and am wondering if they could all be related, some sort of deficiency or other. Any advice is appreciated! I am a young, healthy, active college girl and I love to be outside!! Don't wanna deal with this sun sensitivity like all of the rest of you!

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Anonymous said...

I just discovered a cure.

Salt Loading. Yes, mix about 2-3 teaspoons of 'good' salt (not table salt, but Celtic or Pink salt) with water and drink it. I'm doing an Iodine protocol and Salt Loading is recommended. Bromine causes all sorts of skin problems, so, I thought, maybe this one is that type of reaction too! So, I tried the salt and poof...the rash was gone. I've had it for about a week and nothing worked until I tried the salt. I get this rash every Spring. This year I connected the immune issue to the Bromine. Sure enough, Salt got it to release from my system and the rash disappeared. Try it!

Google: Salt your way to Health and Iodine, why you need it. Best health to you...

Douzeper said...

Just ordered some Celtic Salt to give it a go, I hope it works :) Still using the Malaria tablets "Planquenil" but I don't like taking them.

Donna said...

I've posted over the last few years about the use of Heliocare and Zyrtec and vitamins to control the PLE. The last few years I've had measurably less rash after my first sun contact of the season. This year I went to Puerto Rico in March and had used Heliocare + for 2 months ahead of the trip. I got a couple small patches but no big deal. We just returned yesterday from 8 days in the Turk and Caicos Islands and thought I'd have no problem because I already had my first sun exposure. Boy, was I wrong. I am a mess! I had continued my Heliocare regiment but the rash is terrible....arms, legs, back, chest, feet, hands. Only place I didn't get it is my face.
Sorry for the lengthy description but I'm coming to a point.

The day after my major break count, I was at my wits end and kept trying to think what I did differently. Well, I think I may have come upon something. I'm diabetic and take Victoza injection every morning. I had forgotten my injection the first two days on vacation. I know, bad move but my numbers are pretty controlled. The third day we were planning a boat trip so I took a Dramamine before bed and one in the morning. I had also taken my Heliocare, Zyrtec and vitamins that evening. And remembered my injection that morning. So I decided to google side effects of Victoza. Bingo!! Can cause photo sensitivity and/or phototoxic rash! The pictures were almost an exact match to what I had. The article also listed other meds that causes these two conditions. Bingo again! Antihistamines! Plus it also listed other diabetes meds. I've been getting this rash for about 10 years and that's about the time I started diabetes meds.

I really think that the combination of Victoza, Dramamine and Zyrtec is what caused this horrible outbreak. I'm planning on calling my dermatologist tomorrow and see what she thinks.

Is anyone else out there on diabetic meds and has noticed this since starting them? I swear I've read all the side effects of my diabetes meds and never noticed it mentioning photosensitivity or phototoxic reaction before. If nothing else, I am more intent then ever on loosing 20/30 pounds and getting off the diabetes meds all together And looking for natural remedies for allergies. My goal as I get closer to old age is to get off all meds!

Anonymous said...

I really appreciate this blog page. I have been obsessively trying to figure out what the heck the itchy red little bumps I just started getting last year were! I am 24 and had never had this in my life. After a lot of research I am convinced it is an immune reaction to the sun. You make one mention of this at the end and I think you'd be happy to know there IS treatment available not just prevention! I hadn't considered prevention in the same ways you had because I though I would just need to wear sunscreen..and I gotta admit, I want to get my tan on too! Anyway, treatment, I decided that if it was an immune reaction then I would want some sort of steroid cream or gel to reduce the inflammation and itchy histamines. I have been applying 1% cortisone GENEROUSLY and it reduced the itchy and bumpiness. That being said, I desire a stronger level of cortisone and plan to see a doctor to hopefully get through this first exposure before my skin "Gets used to it." Thanks for all you prevention comments, and for your general understanding. Everyone who has seen my rash just keeps saying "Wear spf, stay out of the sun" and I always say I'd rather have the bumps than be a pasty ghost year round.I am a biochemist with a general understanding of how the body functions at the cellular level so I pretty confident that a higher dose of cortisone or antihistamine will combat the itchy bumps.

Anonymous said...

I have been a pmle sufferer for 27 years and have been reading this blog for advice and guidance over the last 2 years. I have just returned from Turkey and guess what no rash and yes a tan! Here,s what I did:- one month before I took vitamins d, e , niacin, helliocare , antihistamines and betta carotene and used shirudo lotion. Whilst on holiday I took 4 predispose steroid tablets from my GP continued the tablets previously listed and I used banana boat sunscreen with oxybenzone as an ingredient. Bingo no rash and a golden tan! I am away again in August so I will be going through the same process again and promise to let you know the results. Here,s hoping it wasn't a one off!

lee silsby said...

Can You have pmle but not get a rash,? I have madly itchy forearms which start a couple of hours after being in the sun, The itching lasts for around 7 days and then goes ane leaves no trace, I have no problems for the rest of the year, Its just when Im in the sun for more than an hour or two.

lee silsby said...

Can You have pmle but not get a rash,? I have madly itchy forearms which start a couple of hours after being in the sun, The itching lasts for around 7 days and then goes ane leaves no trace, I have no problems for the rest of the year, Its just when Im in the sun for more than an hour or two.

Anonymous said...

Wow I seriously thought I was alone when it came to this problem, I'm 26 years old and have been dealing with this since I was 11 years old...I really never looked for solutions, I get my rashes on my arms, legs, feet, and sometimes my hands..i absolutely hate when I brake out in these rashes but I'm the kind of person that loves the summer and being in the water, so staying in doors is not an option for me..i will definitely try some of the remedies people are suggesting on here, and will be back and post my results..thank goodness for this blog, we all can relate.

Anonymous said...

I am 30 and just started breaking out this summer. I'm not sure yet if this is what I have because I broke out once in June and then was fine in the sun for nearly a month. This last rash was after I forgot sunblock and walked my dogs for about 30 minutes. By bedtime it spread from my arms and chest to my face, back, stomach and legs. I was wearing jeans at the time of the sun exposure and I am curious if that matters or can it spread to parts that were covered. Thanks in advance.

Peter said...

I first suffered from this in 1974, at the age of 26. I have never been a sun worshipper, but at a conference in the Algarve in June of that year quite a few informal meetings took place by the pool. I didn't notice anything the first day, but after a couple of days all h**l broke loose. Fortunately the conference was over the day it broke out, so I managed to get some hydrocortisone cream from my local chemist that evening.
Every year after that it used to start in around February/March, but I covered up most of the summer, so with the cream I could just about control it.
I remarried in 1985 to someone who was a sun worshipper, and being a naive new husband I agreed to go to the Costa del Sol for a holiday. After two weeks of feeling a pr*t in hat, long-sleeved shirt, gloves , long trousers and socks by the pool or on the beach, I went to the doctor on my return. He told me it was PLE, and that there was a "cure". All I had to do was take some pills, immediately put on hat, dark glasses, gloves and coat buttoned up to the neck. Then I went to work (1 hour on the train). After 1/2 an hour at work (in the City) I took a taxi to St Johnb's hospital near Leicester Square, where I stood vitually naked in a UV cubicle for a few seconds, then took another taxi back to work. I had to continue covered up until I got home in the evening. I had to do this twice a week for 2 1/2 months in the spring, with the time in the cubicle increasing gradually, and I was virtually OK for the summer.
I managed two years of this, and then gave up. We went on non-sunny holidays until eventually we agreed on separate holidays, she with a friend and I with the friend's partner who didn't like the sun either.
We eventually split up, and I married someone who didn't care whether she sunbathed or not.
Hats , long sleeves and sometimes gloves were the order of the day, until 5 years ago I discovered a total cure! I wouldn't recommend it to anybody, though.
In April 2009 I started to ache in every muscle in my body, and after it became unbearably I went to my doctor who gave me varioius pills and potions. Nothing seeemed to work until I went to a consultant who told me I hadPolymyalgia Rheumatica and put me on a heavy dose of streroids (Prednisolone). The results were instant, and I could scurry around like a two-year-old. With the steroids my PLE disappeared as well, and didn't come back until my PMR vanished three years later. For three years no hats no gloves - bliss!
Unfortunately, the side-effects of the steroids are not good, and I'm left with vey thin skin and easy bruising, in addition to a return to PLE.
Hey-ho - back to the hats, gloves and hydrocortisone!

Anonymous said...

Suffered for decades. Thought it was reaction to hotel sheets because I got it when I traveled...which was often taking me from wintery North to Sunny South.
Learned on line that Chocolate, Ibuprophren, and Tomatoes increase the sensitivity to sun.
My life was changed.
Except when I forget all that and have lasagna for dinner like I did two days ago and now feel like pealing the skin off my swollen arms. GHAAA!!!!!
Before I knew about those things above I would go to the doctor and he would give me a steroid shot and a prescription for steroids that would work wonders. That steroid shot would take me from near crazy to comfortable in about 1 hr.

Anonymous said...

This is really helpful. I am 35 and suffered since 20. I only get this problem around my bikini line down to the middle of my thighs and on the back too (below my bikini bottoms). And it looks frightful! It has really upset me over the years. For me covering up wasn't much fun either...wearing massive shorts when going to the pool. But I seemed to blend in when holidaying in the the middle east! My doctor has fobbed me off for years and suggested a different sun cream and anti-histamine, which after many holidays I know makes no difference
So this time in Thailand I bought skirted bikini briefs and a swim-dress which looked okay and worked until I took a boat trip and did some snorkeling where the fabric lifted up and the PLE began although was not as bad as normal. I will try these creams but was only diagnosed by a dermatologist last year who gave me some steroids which also did not work in Portugal and I had a fully blow attack after 30 minutes in the sun.

kd Nelson said...

I have been dealing with this issue for 22 years with it at it worse for the past 17. Numberous dermatologist have told me to just stay out of the sun...I'm not a vampire, I require sunlight.
I have used many sunblocks over the years and they have only worked for 1-2 hr tops. I will definetly be trying the items you suggested.

-K.D. Nelson
Author, Justice Trail

kd Nelson said...

Something I forgot in my last comment, after the rash has broken out the one thing I've found that helps it, witch hazel. Just soak a cotton ball and dab the rash, and it's pretty inexpensive.

-K.D. Nelson
Author, Justice Trail

Anonymous said...

I suffered badly for years, sunscreen really didn't help that much, it increased the time I could spend in intense sunlight slightly but increasing from 10 minutes to 2 hours wasn't enough.

For a year now I've been living a primal lifestyle, basically meant ditching all grains, vegetable oil and sugar from my diet. Besides the numerous other benefits I've experienced my sun tolerance has increased 100 fold.

I spent all day (10am - 4pm) in the full sunshine without sunscreen, clothing, hat or shade. The rash it gave me is almost non existent compared to every year before.

I will try some of your suggestions and hopefully be done with PMLE completely.

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Charlene said...

I've had PMLE for about seven years. Now, I live in Phoenix, so it's pretty hard to stay out of the sun, but I've noticed that I'm usually okay hiking or spending a moderate amount of time outdoors; however, the second I get in water my rash will start. Has anyone else noticed this? Charlene from Phoenix

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Em said...

Hi,
I was just wondering if anyone could help?
I have had pmle since I was 12 (now 19) its become something that i have to constantly think about or wonder if I could ever have a proper care free holiday.
I currently take Fexofendine Hydrochloride 180mg most days from spring, even in Manchester (pretty much the rainiest place)
I can get steroids prescribed for my pmle but my dosage would be down to myself as my doctors have no clue (went 7 years without a diagnosis, would be at the doctors every other month from spring, which was so fustrating for a teenager and embarrassing, my hands feet and face are affected by pmle so there was no escape), can anyone advise me on the dosage or what dosage they take?
I am seriously panicking as my family booked a last minute holiday (climate 35 degrees Celsius) I have always developed the rash and seems unavoidable.
I have tried homeopathic remedies to... which didn't work.
I have managed to control it slightly to a mild rash, this takes weeks of increasing exposure to the sun, which i do not have time to do.
I have recently been looking at Eucerin allergy suncreme, can anyone share their experience with this? I normally use soltan as my previous research (last summer holiday 2 years ago) was the best for high spectrum protection.
I know its a long shot to get a reply on a 5 year old feed but it's worth a go.

Claire said...

Hi there, I've had pmle for several years now and also find gps just don't understand it. I'm under a very good consultant who has done biopsies to check for lupus and blood tests to test liver function etc. be sure to push to see a hospital consultant about it if you can.

I've found the best sun cream is La Roche-Posay Anthelios XL 50+ cream (and not sure of your skin colour, but I am fair skinned and they do a tinted foundation version which helps me look less ghostly on holiday). Take the steroids 2 days before your holiday and while you are there. They don't work for me personally but there are also topical strroid creams (eumovate for face and dermovate for body - apply thinly and twice daily for 10 days after your rash first appears).

Your GP should be able to clarify all of this online on their intranet. Hope you manage to enjoy the holiday...just be sensible in the sun. There are some great (non granny-style) hats out there at the moment that will help :)

Harriett said...

I really appreciate this site! I have had trouble with what I now know is PMLE (my diagnosis) since I was about 30. For many years, I thought I was allergic to sunscreen and only used all natural products. I think I am sensitive to oxybenzone, but began to realize it was actually the sun giving me the rash. I eventually did a lot of reading and research and found Ocean Potion and realized I could use it, which was such a blessing because it was available at the time at Walmart and Walgreens. Of course, about a year later it seemed to disappear, so I now stock up on it from Amazon. That helped, because the natural products did not seem to be as effective at protecting me in the sun and dried my skin out. I live in Colorado, so the dry air and the intensity of the sun are big factors here. I began taking betacarotene most days and ordered heliocare last year and I think it does help as well. I am now 61 and still struggling with this post menopause (sorry!). However, my body overreacts to lots of things and I have fibromyalgia, so maybe that's a factor.
I have found success this summer with taking 2 betacarotene and 2 heliocare on days I'll be in the sun. Claritin and the like make me feel more anxiety us than I usually am, but I have used it before and during a sunny trip to a hot springs this summer and had no problems. Fast forward to last week, with our trip to Akumal, Mx. I took heliocare and Claritin the week ahead and took them with me.
I am really mad at myself right now because in spite of taking them with me, I wasn't as consistent with taking Claritin and my heliocare. I am not really even sure if I took two beta each day, although I think I did. I took those in a pill carrier separate from my morning prescription meds and guess I was having too much fun and missed several days of taking the Claritin and heliocare. I was very focused on not getting stomach sick (which I usually do unless I'm super careful)and was religious about taking acidophulus and pepto tablets daily. I also realize now that I pushed the envelope more in terms of sun exposure because I didn't reapply sunscreen after snorkeling , although I positioned myself under a sun umbrella and covered up my lower legs and because that is often where it starts for me. This time, it is mainly on the back of my thighs and somewhat in between my upper thighs. Clearly where I got more sun during almost daily 1-2 hour snorkeling.
I should just be really grateful, because I actually did not get my rash until the day after we got home last week. But I am so bummed to have it happen at all and feel like it's my own fault. But maybe that's better than being super vigilant and then having it happen anyway!
That leads to another question I have. I am super hard on myself in general and have issues with anxiety, especially when it comes to things like this. Does anyone else feel that part of the rash and reaction itself causes a feeling of great anxiety and is that part of the allergic reaction or simply understandable. As you can probably tell, I don't like losing control in general and am usually so conscientious. So this really bothered me because knowing what can help and then not doing it is pretty silly of me. Trying hard to let it go but not very successfully! My husband says just focus on what you'll do differently next time and I have done that, even writing a note to myself to put in my vacation file. Next time, I'll lay out all the things I need to take and have them staring at me and in the same place as my thyroid meds, which I never miss. Sorry to rant but just venting to those who will hopefully understand does help. I also am low on Vitamin D right now. I don't know what why I am so good with prescription meds but bad about supplements!

Thoralor said...

I thought at first I had found the right page, but my condition is different.

After not being in the sun for several months, when I go in the sun, in 10 minutes my back itches like crazy and I get these welts that look like giant mosquito bites.

After a few minutes, the itching starts to reduce. Thirty minutes after exposure begean, the itching is gone and the swelling is going down, then the episode is over.

I can stay in the sun or go back into the sun the next day and nothing happens.

My theory is that there is a microorganism in my skin that is killed by the ultraviolet rays of the sun. When they die, it sets off an immune response, and my immune system is able to dissolve their dead bodies within 30 minutes, then the episode is over.

Some are living too deep into the skin to be killed by the sun's rays. They multiply and some move closer to the surface. If I am not in the sun, they multiply until I go in the sun and they are killed off again.

I've been too multiple specialists and they just say "sun allergy," which doesn't make sense because I can go in the sun after the episode without problem.

If anyone has heard of something similar, I would like to know.

lalaland said...

I think the prevailing wisdom might have PMLE backwards. Much like food or pollen allergies, the way to treat PMLE is through desensitization. Vitamin D is produced by UV in the skin, and PMLE is an allergic reaction to the vitamin D. Taking vitamin D as a supplement when you can't get a tolerable amount of sunlight should keep your body from overreacting, and you should try to start with small doses of sunlight with NO sunscreen on and increase your tolerance slowly. I would use vitamin d at 4000 iu daily if not getting any light on a day-to-day basis.

I also found taking 1-2 pills of 1000mg vitamin C helped with the rash, since it is a histamine reaction and C is a powerful antioxidant.

I hope this helps!

Anonymous said...

Hi Guys,

I have been suffering from PMLE for many years and have exhausted the NHS, I was lucky enough to go through the loop with a serious Dr, he sent me to a specialist in Aylesbury, and then through a course of desensitization therapy at Northampton Hospital. I really was not worth the effort. I still suffer. I went through desensitization for 5 years, going to the hospital every week for about 16 weeks at the end of winter, UV exposure for 1 second, then 2, etc up to about a minute. It would provoke a reaction that would subside and then it would be just as bad during summer. I gave up two years ago and have not noticed any difference. However, I am making sure each summer that I get the maximum exposure that I can. I gave up on using sunscreen and instead limited my exposure gradually building up. Well, this year, I do still have PMLE. But ... I no longer seem to get it on my head (my forehead use to look a bit like a minefield). I got it so bad that I would get big hives coming up. This would be on anywhere exposed to the sun for ten minutes.

Now since the start of summer I have been out as much as I can. I get it pretty bad on my arm (it's pretty scabby at the moment) but each year it is getting less and less and takes more and more time to come up. Today we have been at the bedford festival and I have been out in the sun for about a total of three hours exposure, no sunscreen, I have just a few new lumps on my arm. However I am very light skinned my partner who is Italian calls me "Motzarella" this year my tan is darker than hers. It seems for me exposure is the key, but, in metered amounts, such as at the hospital, it did not improve much. The more exposure I get now the better it is and the less time the rash (hives in my case) last. They will flair up, but are normally gone the next day.

I know this will make people cold, as I am obviously increasing my chances of skin cancer, but when I spoke to the Dr this year he was happy with the progress. I should state that I am not a masochist and do avoid getting myself burnt.

Anyway, thank you for the helpful tips, thought I would just add this, as it can seem futile, but this is definitely the only thing that has improved it year on year.

Leila F. Search said...

Sigh. Sitting in Mexico under the shade, with an itchy Ple rash yet again, another vacation made miserable by this condition, and I am a beach and sun lover. I'm so disappointed to see there's still not a cure. Are there any updates on potential "cures" or pills that change the melatonin in your skin. agh. Just read through 5 to 6 years of sufferers' comments and see no real treatment.

Anonymous said...

I suffer from PMLE as well, nothing has stopped it except a steroid from my dermatologist. However, when I went to Greece last summer I felt it coming on, as I get really itchy before the bumps actually pop up, I started to notice it was going to happen, so I asked them for Benedrl. They do not have benadryl, so they gave me (Bllargen) which is not approved by the FDA in the US. This worked wonders, I took the pill, and immediately the itchiness went away and I did not suffer from PMLE that vacation. I am extremely pale, so this was like godsent. If you can get your hands on this, i recommend it.

RoBro said...

I was diagnosed several years ago with PMLE, and it seems to get worse with each year. I have found that I react to both UVA and UVB, through car windows, and even on overcast days. I have tried several sunscreens, but they only seem to cause me to break out faster and worse than before. I am quite heat intolerant, so staying out of sun and heat isn't about to break my heart, but it is inconvenient because I have to be out and about and cannot stand wearing long sleeves. I am also blind, so have to walk or stand outside waiting for public transportation whenever I want to go somewhere, which means longer periods of exposure. I have read many suggestions for easing the symptoms, and I am excited to try some of these. It is super frustrating because my outbreaks do not dwindle as the summer months progress. I react severely during winter, spring, summer, and fall. It is nice to hear that others are experimenting with different treatments, and that there are some products that help. It is also a comfort to know that this is not as uncommon as I previously thought.

Anonymous said...

Pmle diagnosis for 3 years. Please give a thought to pellagra as niacin resolved the issue, results in 2 days