Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)

[andyb]

Hi Guys

I don't have PMLE myself, but, having seen the pix you posted, and not having heard of PMLE before, I did have a look at Wikipedia to see if I could find out more:

http://en.wikipedia.org/wiki/Polymorphous_light_eruption

A couple of things: it hints that PLME can be misdiagnosed as a form of hives and also that perhaps 10-20% of the population may be affected by PLME to some degree. So you are certainly not alone with this.

But of possibly greater interest is the reference to an experimental treatment in Australia:

As of 2008 a company in Australia named Clinuvel Pharmaceuticals Limited is performing clinical trials with a melanocyte-stimulating hormone named melanotan (which they refer to with their proprietary name CUV1647) for polymorphous light eruption

May be helpful to know about? Debbie, could this be the hormone treatment you heard about?

btw I'm surprised to read that sunbeds are used as a treatment for this - I don't understand how this might work - it sounds a bit like fighting fire with fire. Are you able to say any more about this? I presume that the idea is to try to de-sentitize the skin? Would I be correct?

Best wishes

andyb

[aida711]

Hello all...
I have not been to a dermatologist recently but i seen few doctors in the past and nobody could tell me exactly what it was that i have but i belive i have PMLE.
I have been suffering for almost 19 years and i always thought i was allergic to the sun.
I don't know anybody else with the same problem so i would love to talk to somebody who understands how i feel.
Few days ago i had to go out for a job interview and by the time i got to the interview my arms were coverd with red itchy spots.
It was embarrassing but how do you explain to other people what you are going through when you don't even understand what is going on with your body.
Thanks for listening and hope to talk to you all soon

Aida

[Embarassed]

I'm happy to hear that you got to have some summer itch and bump free. My camping went well. The new sunscreen worked well, but I still avoided the sun at all costs. The East Cost tour (new brunswick, canada) was interesting. It was either sunny and hot or cool and raining. There was alot of time that i didnt get to actually do stuff with family because they were all outside in the sun. We were about a 5 min drive to the ocean and i was only there twice and only for an hour at a time. A few of us went whale watching. I slathered on the sunscreen for the 2 hour tour. However we didnt see any whales so  they extended the tour and we were on the water for 6 hours, of course i didnt think it would be so long i didnt bring the sunscreen with me. that was about 3 days ago, the day later my hands started with the bumps and now.. for the FIRST time they're on my face!, my nose and cheeks which got the most sun. Other then that it was a good trip and i'm happy that I didnt break out that badly. The girl that does my facials  located another sunscreen made for people with sun sentivities, can't wait to try it out!

[bunnie]

Oh dear what a shame! I hope it clears soon for you and you can ease it a bit on your face. However I am interested to know if during those 6 hours you finally saw some whales?
regards Bunnie

[e7rick]

Hi again Debbie!

My condition started when I was 22 and then it got worse every year for about 5-6 years until it stabilized. It hasn't got any worse after that, but I feel that it can't get much worse now. 

I also hope that it will disappear some day, but I don't think it will ever happen. My wife and kids returned from Spain yesterday - all three with really great tans. I am happy that they can spend time in the sun. I wish I could go swimming in the ocean with my children. 

Best Regards,
Richie

[solitario]

Hi,
I also have polymorphous skin eruption.  Have you found anything to help you?

[e7rick]

Hi Debbie!!

I found this comment when surfing the net for some news on PMLE:

"Antimalarials at low doses are sometimes helpful, especially in patients with a large papular variety of PMLE. Beta-carotene, which is effective in erythropoietic protoporphyria, may be an alternative to chloroquine. Oral carotenoid preparation (beta-carotene and canthaxanthin in a daily total dose of 100 mg) was compared to hydroxychloroquine (200 mg qd). Both offered full sun tolerance in an equal but small, percentage of patients, when compared to a placebo."

http://www.emedicine.com/DERM/topic342.htm

The "large papular" reminded me of the picture you posted. Perhaps this could work for you? I get very small blisters, that look very different from your condition. I have tried both beta-carotene and  hydroxychloroquine - without success. Maybe it could work for you!

Take care!

Best Regards,
Richie

[dibdob123]

Hi Richie

Thanks for the link, there is loads of information on there, thank you!

I have just returned from a long weekend on the south coast, I am covered in my rash, not as bad as I normally get it.  I used factor 40 throughout and reapplied every two hours, sometimes sooner.

My feet and hands are the worst, they have swelled up too which feels very uncomfortable, the itching on my feet is intense.  I looked really cool sat on the beach today, I had a t-shirt wrapped round my head, big sunglasses on and a huge towel wrapped round me with my feet buried in the sand, it was a very good look but I longed to be able to be in the sun and enjoy it.  (I will post a pic here shortly)

Anyway, thank again for the new info.

speak soon


Debbie

[Aunt Jen]

I'm another sufferer of polymorphic light eruption.  I just had my first breakout of the season last week and had to miss several days of work.  This is my first chat room that I've joined and I did so because it was nice to know that I'm not the only one to suffer from this.  I still can't figure out how you can wake up one July morning and be allergic to the sun.  That was 6 years ago . . . it took a long time to finally diagnose me correctly and I am one of the worst cases the dermatologist has seen . . . oh great!  I decided to forego my PUVA treatments for the last 2 summers in an effort to get pregnant - can't do radiation treatments and fertility treatments at the same time (I'm 39 now and trying to get pregnant before it's too late!)  I feel your pain . . . I haven't been able to see any of the photos posted, but I know what it's like.  I just hope I don't pass this on to my child (when I'm lucky enough to have one).

[CazAngel]

Welcome to Skin Cell to all of you.  Like Bunnie, my sympathies go out to you. I'm sorry you are struggling with this condition. I remember hearing something once about this condition, though I couldn't remember what it was called until you mentioned it in your post. I'm very glad you joined this forum for support, it's always nice to have others who can understand and support you, when we have these struggles in our lives, care and understanding can be a big need in these times. Though, I do not have this condition, feel free to message me anytime, all of you, and once again big warm welcome to Skin Cell.

[chris52]

I've had PMLE for 34 years. I used to get PUVA treatment where I slowly built up a tan. The first time it took a year to get a tan. I used to start at 30 seconds and eventually built up to 6 minutes. This went on for quite a few years and at least helped the condition. Then the consultant decided to stop the treatment, this was at the time there was a lot of media attention re sunbeds. After a couple of years I decided to do it myself and started to go to sunbed salons. I slowly built up to 6 minutes, just like the hospital. I found starting in March was the best time. I use a factor 20 sunscreen that lasts all day. I don't know if it's because I'm now older but I find I don't break out as bad as I use to - no consolation when you're young, I know. I was only 22 when it started. My daughter is in her 30's and she has suddenly started to be allergic to the sun. Not as bad as I used to be and at least she tans where I never used to.

[mb6262]

Hi Nora

I also have PMLE - well at least I think I do - getting a definite diagnosis is not easy.  Since 2003, I would get an itchy red rash on my forearms after being in the sun (like prickly heat) which would go away overnight.  That didn't really bother me too much - it was obviously PMLE.  However, a year ago, it suddenly started affecting my face.  Something tipped it over the edge (the only "unusual" thing that I did was to take a Spirulina supplement for a couple of days thinking that all the betacarottne in it would be good for me, and I suspect that it just further upset the immune system so I stopped).

I found your problem with the lips interesting because I have searched the internet high and low and have not been able to find much on PMLE affecting the lips.  Usually it tends to spare the lips, and my dermatologist says that it is rare for it to affect the lips.  Anyway, your problem does sound similar to mine.  I don't have the bumps on my actual lips, but they do crack and dry out very easily if I don't put any sunscreen on them.  Even fluorescent lights irritate them.  What is even more unusual about my problem though is that the area immediately above the center of my top lip swells up slightly.  It started as just a 2-3 millimeter swelling, and it is now about half an inch in size.  It's been gradually getting bigger over the past year.  It just looks like a slightly swollen bit of skin - slightly raised, almost like an urticaria lesion.  It swells up more during the day if exposed to the sun or fluorescent lights, and then settles a bit overnight, but never returns to normal.  On bad days, I also get a slight swelling along the border of my bottom lip - where the lip meets the rest of the skin.  Do you get similar symptoms?

I can certainly relate to the dry and cracked lips, which itch and burn like crazy at times.  The lips don't crack or hurt as much if I put make up on them that contains zinc.  I haven't found a lip balm yet that helps me - ingredients other than zinc seem to make the burning worse.

Severe PMLE is certainly not an easy thing to put up with.  I have found it extremely difficult since it started affecting my lip because it's no longer a rash that just goes away overnight - it's now become a sensitive patch of skin that gradually enlarges the more I expose it to the sun.  Some people think you're dramatizing or overreacting, while others are quite understanding.  Holiday time is the worst.  I feel quite self conscious having to get around with an umbrella (sunscreens just do not protect my lip adequately). So I sympathize with all you fellow sufferers.

Kind Regards
Mariana

[CazAngel]

Welcome, Mariana. 

[anita99]

Finally, I find a forum that talks about PMLE.  I am 36 yrs old and the first time I experienced PMLE was at the age of 25.  Back then I tried to search for this sun allergy condition on the Internet but couldn't find anything.  I live in Vancouver, BC where there's mostly cloud cover and rain.  The first experience with PMLE was in Cancun, Mexico.  After the 2nd or 3rd day, I experienced a large rash over my legs and stomach.  It was mildly itchy and a doctor used a steroid injection to clear up the rash.  Over the next few years it got progressively worse but only when I travelled abroad to tropical locations.  My latest reaction happened this month when I went to Puerto Vallarta, Mexico.  I tried everything from taking anti-histamines 2 weeks in advance of the trip, using Vichy and Roche sunscreens with 60 SPF and high concentration of Mexoryl and avoiding direct sun exposure.  I also tried homeopathic treatment prior to going but nonetheless I got the rash.  This time however I wasn't as careful as in the past and I ended up wtih a rash over my legs, thighs, back of neck & shoulders.  The legs looked inflamed and felt hot to the touch as well.  I also got chills, joint pain and a slight fever and the rash itched so much.  I experienced some swelling too.  We had to call a doctor in the middle of the night and again he gave me the steroid injection.  This did calm the rash and it went away 15 hours later.   He did indicate it was due to the sun but he suggested I get some immune tests conducted.  I'm currently waiting for the results of my lupus tests.  (Although, I'm pretty sure I've tested this out in the past and it came back negative). 

Has anyone tried the new sunscreen by Roche specifically tested with people who have PMLE?  What were the results?  The only other thing I'm going to try next is taking high doses of beta carotene prior to any trip and include it in my diet.  I'm quite desperate to find out what the cause of this problem is.  As a child I played in the sun all day long and I'm of East Indian (descent) so PMLE appears to affect all races.  One thing I have noticed is my face and lips have been spared thus far.  I do wear foundation and I feel this might actually be a protective layer but then again i've read that the face is usually spared mostly because it is usually exposed all year long to UVA/UVB.  If foundation works, I may have to try it out on my legs!  :-)

Hoping for a cure soon as I really enjoy the beach and sun.

Anita

[ddcile]

I TOO HAVE THIS AWEFUL SKIN CONDITION.    I have had some help with VIT B 3 and betacarotene and skin hardening with UVB tanning. It has helped me alot and wondered if anyone else has had any luck with this approach? I start now late winter and start taking the vitamins and do UVB taning starting with 2 minutes : 3 times a week, working up to more as my skin tans and hardens. It is a slow process but I can enjoy the outdoors again and not break out and itch like MAD!! I do need to be very careful and if I start to break out, hold off and go slower with the hardening. I have NEVER had any luck with sun screens etc. I even seem to break out even with the ones reccommended!

Another question I have is has anyone else noticed the old scars breaking out for no reason? I wake up and find that at night I may have scratched and an old area that has showed signs of a previous breakout had reopened and itched and now has to reheal?? It is weird but it happens all the time. I have two old spots on my arms and hands now that are open and itch for no reason?

Also does any one have a relationship to a glass of wine causing the problem to reoccur? Seems to happen to me?

Thanks for all the info in advance. Great to have a place to come to for help and answers!!

From:ddcile

[Jaimee]

I TOO HAVE THIS AWEFUL SKIN CONDITION.    I have had some help with VIT B 3 and betacarotene and skin hardening with UVB tanning. It has helped me alot and wondered if anyone else has had any luck with this approach? I start now late winter and start taking the vitamins and do UVB taning starting with 2 minutes : 3 times a week, working up to more as my skin tans and hardens. It is a slow process but I can enjoy the outdoors again and not break out and itch like MAD!! I do need to be very careful and if I start to break out, hold off and go slower with the hardening. I have NEVER had any luck with sun screens etc. I even seem to break out even with the ones reccommended!

Another question I have is has anyone else noticed the old scars breaking out for no reason? I wake up and find that at night I may have scratched and an old area that has showed signs of a previous breakout had reopened and itched and now has to reheal?? It is weird but it happens all the time. I have two old spots on my arms and hands now that are open and itch for no reason?

Also does any one have a relationship to a glass of wine causing the problem to reoccur? Seems to happen to me?

Thanks for all the info in advance. Great to have a place to come to for help and answers!!

From:ddcile

I have a question regarding the hardening of the skin by using UVB tanning. Is this just a regular tanning bed you are using? I am desperate to find something to help my skin. I have been to two different dermatologists and they have been no help. My rash covers my forehead and it is so embarrassing. It started three years ago, I am 25 and it begins in the Spring. I am a P.E. teacher, therefore, I have no choice with choosing to stay inside out of the sun. I have tried sunscreen and covering up but nothing seems to help   I usually stop getting the blisters and rash by June. My husband and I are planning a trip to Jamaica and I am worrying myself silly over whether I will have to remain indoors the whole trip. It did feel nice to see that there are others who feel this same way. (even thought I wish all of us did not have to go through this!!) I am glad I found you guys!! LOL

[palegirl]

HEY!

Im 14, and I too have PMLE! All my doctors thought it was something else and I got tested for loads of different things, then one of my friends said she had the same thing I did, I was soooo happy to hear that I knew some one with this weird allergy. So as soon as I got home from school one day I went to google and looked it up and found out that I had PMLE. But no medication works on me! So I have to wear SPF 60 all the time, every one asks me why im so pale and I just answer it's an iron thing cause when I told another friend about this she said it was a lie and that it's not real, and I hate it when people think its not real so I find saying an iron problem is easier. Im so glad to hear all of your storys and every thing. Thank you all so much!

[natalochka_2009]

I have read what everyone said in this forum. It is very interesting and helpful, as I have found lots of new information about the new treatments of PLE.
I have also read about PLE on the Internet, and can advise on the good websites, that give treatment advices:
http://emedicine.medscape.com/article/1119686-treatment
http://dermnetnz.org/reactions/pmle.html
Now, little bit about myself:
I am 27. I have had PLE for nearly 2 years. Before getting PLE, I have never had any type of allergy or any skin problems, and would never think that this could happen to me.
In one Russian forum (I am from Ukraine, but live in London) one lady wrote that she got PLE after she got sun burned.
Apparently this is exactly what happened to me. I have very pale skin and did not get sun tanned easily. Despite this, I loved and enjoyed sun a lot (it is in past now ) and could spend long time waking in the sun or reading a book. 2 years ago, when I was on holidays in Ukraine, I got seriously burned. After this I have notices slight itching behind my ears and neck, but did not pay much attention to this. It was developing, and started to disturb me seriously. I have seen few doctors last year, some of them were private practices, which I paid lots of money to. But no-one would tell me what condition I have. I have found out about it myself after reading forums and different information on Internet.
One good doctor in Ukraine told me what course of medicine to take that may help (some were anti-malarial tablets). I will tell you about them another time, as I don’t have the names with me right now. (I am not sure whether the course of medicine helped, but at the time I was taking the tablets they seamed helping). Also he advised to use hydrocortisone cream and sun creams, and of course sunscreens.
Now I have started to take Beta carotene and Niacinamide (vitamin B3). Hope it helps.
I've  got lots of stories to tell you about my condition, but I will do it slowly...
Bye-bye for now and Good-luck!

[e7rick]

Hi Pale girl and Natalotchka,

Thanks for sharing your stories. Sorry for responding so late, but I don't check for news on pmle very often anymore, since I have had the condition for more or less 20 years now.

I spent my Christmas vacation in Florida. It was not very hot, but often very sunny. I haven't had much success with sunscreens before, mainly because I tend to rub it off when sweating under the sunscreen layer and it never stays very long on the lips either. I tried a new SPF50 from Vichy this time and it worked really well. I could join the family at Disney World from 3 in the afternoon and I had no symptoms whatsoever! - Great!!   

Merry X-mas and a Happy New 2010!!

[Bobby1234]

Hello,

Yes, your skin rash looks very similar to mine...so I empathise with you

Have learned to live with it, till recently...always called it my heat rash! (Understatement or what?)

Go around shops in summer with coat hat and gloves at times. Have the security guards follow me everywhere, got so used to them doing this feel they are my personal protection squad!

Have recently been diagnosed with Hypothyroidism...bet you that's got a lot to do with how bad you react to sun too!

Don't know if anyone else has had checks for that..as the thyroid has a lot to do with autoimmune systems too!

Anyone got any comments..similar thoughts

Al