Author Topic: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)  (Read 49507 times)

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Offline mrs. rahl

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #40 on: Wednesday February 10, 2010, 03:49:54 PM »
Hi everyone (sorry in advance for the long post!)

So glad to have found this forum (with people who can understand what I'm talking about)  ;)

My PLE resembles the one Anita describes. First off, I live in Canada (Montreal) so cold weather most of the time and a few months of summer when it can get quite warm. However, I never get the symptoms when I'm home in the summer and I do stay outdoors, love the sun and the swimming pool. I only (so far that is) get the reactions when I'm on a vacation somewhere warm (islands, Caribbeans).

I had my first bout on my honeymoon at 25 and did not know what that was about, got the bumps on my eyelids and mainly the chest area. Since then, I've gone on a few trips but not that many but every time, I end up with the lovely bumps, itchy and annoying but that always ended as soon as I stepped on the plane!  ::). However, for the past 5 years, it seems to be progressively getting worse (which from what I'm reading seems to be the case for a lot of people).

Last February I was in Mexico and not only did I get the rashes but I also got fevers and my lips looked like Angelina Jolie's every morning! I got what looked like an allergic reaction and they were cracking and bleeding!  Sigh... So now, I'm scheduled to go with my family (and some friends) on April 1st to the Dominican Republic and I'm scared to death of having even worse symptoms (assuming that they only get worse)...

I'm now 44 year old and the symptoms are not lessening, if anything it's the opposite. I head read somewhere that PLE was mainly seen in white women (who go on sunny vacations once a year ! Moi!) between the ages of 20 and 40... newsflash PLE, I'm older than 40!  ;D

Am I destined to never go to sunny destinations again? My goal is not even to sunbathe (I've pretty much scratched that off) but rather be able to have a good time without being miserable.

Anyhoo, a lot of babbling but this is my plan:

  • I'm seeing a dermatologist in early March and see if she can recommend something
  • I started suntanning bed for 15 minutes and will do this once a week until I leave to see if it will help
  • I will wear a VERY good (read here probably expensive) sunscreen with titanium dioxide, face and body
  • Make sure I wear SPF lip balm
  • Bring some claritin with me and take some before sun exposure as well as during
  • If my doctor prescribes Malaria medication (because it is the DR), I will take that
  • I will start taking some Beta-caroten and B3 vitamins and ingest as much antioxidants as I can
  • Try to avoid the sun from 10:00 a.m. to 2:00 p.m.
  • Wear some covering clothes whilst in the sun
  • Keep my fingers crossed

I pretty much came up with this by reading up on the internet so I do not even know what the dermatologist will tell me (will probably think all of this is quacky! lol) but I would be interested in getting your opinion on the above. Am I going off the deep end?

Thanks for reading!

M.




++Moderator edited format slightly to break up the text and make for easier reading++
« Last Edit: Wednesday February 10, 2010, 10:11:17 PM by andyb »

Offline chris52

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #41 on: Tuesday February 23, 2010, 08:05:49 PM »
My daughter has been to see a consultant today. Since I have PLE he has said that it can be inherited but there's still not a lot known about it. The treatment she's to get is UVB sessions. It will be twice a week for 6 -8 weeks. They now think that people with PLE have a chemistry change in the skin when exposed to the sun that causes the blistering etc.. The treatment, if it works, is for 3 years and then you can leave it the next year to see if it has worked. If it works then it's supposed to last for about 5 years and then you start over again. We are on holiday in April to Spain so she will have had 5 weeks by then, so can see what happens. He's said that I should get referred again as they no longer do PUVA that I use to get and I might benefit from the new treatment. Probably too late for this year, but it takes so long to get to see a specialist will be in time for next year.

Offline mrs. rahl

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #42 on: Wednesday April 14, 2010, 06:17:21 PM »
Update... back from my trip and all in all success with all the steps I took to avoid sun reaction. I ended up with a very small reaction (bumps on chest and shoulders) on the last day but probably due to the fact that I was a bad girl on the last day and only applied some SPF15 (the rest of the week, it was either 45 or 60 for the body and 30 for the face). However, no itching and burning (probably also because I was not in the sun again after that - leaving a few hours later).

So, here's a recap of how it went:

I'm seeing a dermatologist in early March and see if she can recommend something - Did that, she didn't tell me anything I didn't already know but she did say that my plan seemed like a good one - and one important other thing that my lip swelling was maybe not even sun related but could be from something I ate - hmmmm!
I started suntanning bed for 15 minutes and will do this once a week until I leave to see if it will help - Did that, I think it helped... probably also the fact that I had a small tan from the tanning bed (no reaction from that btw) made me expose myself less, therefore helping with the bumps
I will wear a VERY good (read here probably expensive) sunscreen with titanium dioxide, face and body - Did that, in fact I had way too much suntan lotion with me, but better more than not enough and I would apply in the morning in the room before even going outside and reapplying liberally trhoughout the day
Make sure I wear SPF lip balm - Did that and had no problem with my lips
Bring some claritin with me and take some before sun exposure as well as during - Dr. said that was a good idea and I started taking them 3 days before leaving and took morning and night
If my doctor prescribes Malaria medication (because it is the DR), I will take that - Was prescribed, took it - not sure if it helped any!
I will start taking some Beta-caroten and B3 vitamins and ingest as much antioxidants as I can - Did that
Try to avoid the sun from 10:00 a.m. to 2:00 p.m. - Was pretty good about that, I would stay under the palapas, unless in the water
Wear some covering clothes whilst in the sun - Did not really do that
Keep my fingers crossed[/li][/list] - Did that a lot!  :P

My take on this is I did a lot to avoid the reaction but I think all in all, success had to do with using good cream and using a lot of it (not really being caught withouth any protection on my skin!).

Hoping this can help someone else out there.

Offline chris52

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #43 on: Tuesday April 27, 2010, 07:47:18 PM »
Just got back from an extended stay in Spain (re the volcano). My daughter had a few sessions of UVB before we went and was fine. She got a little breakout after the first few days, used a SPF 20, but they cleared up quickly and she ended up with a fantastic tan. I, however, didn't relaise how hot the sun was and used my Once a Day SPF 20 and broke out on arms and chest. After that I used SPF 50 Sun Screen (Australian). Due to see Consultant this Friday so at least will have something to show and hopefully I'll get on list for UVB treatment next February.

Offline e7rick

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #44 on: Wednesday December 01, 2010, 12:34:10 PM »
Bobby...

I just wanted to direct you attention to a paper that confirms a correlation between people suffering from PMLE and autoimmune thyroiditis.

http://www.ijdvl.com/article.asp?issn=0378-6323;year=2010;volume=76;issue=6;spage=704;epage=705;aulast=Seetharam

/Richie

Offline scullyxo

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #45 on: Monday December 20, 2010, 10:44:35 PM »
Hi Everyone,
I was just diagnosed today with PMLE... Thanks so much for sharing your stories on this forum.  It has given me some guidance as to preparations I can take for springtime.  I live in Alberta and my first rash occured out of the blue last year in June.  It progressively got worse as the summer went by. 
I am scared as to what kind of reaction I will have after a winter of little to n sun exposure.
My dermatologist had me make a return appointment for February and he said he will prescribe a medication.  I of course didn't get the name of the medication so I will have to update with that information in February.
My rash does not seem to be as severe as some of the other cases I have read about.  The rash appears though within minutes of sun exposure and last for about 1-2 hours with severe itching and burning.  I have even broken out from sitting in my kitchen with the sun shining on me through our windows.  - picture attached - this has been my most severe reaction.
I have had reactions almost everywhere but my face.... even the palms of my hands have been affected.
Once again - thanks for all the information - i will be doing a lot of reading in the next couple of days :)
 
« Last Edit: Monday December 20, 2010, 10:50:04 PM by scullyxo »

Offline e7rick

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #46 on: Tuesday December 21, 2010, 05:37:11 AM »
Hi Scullyxo,

Welcome to Skincell and thanks for sharing your experiences.  :)

It was interesting to hear about how quickly your rash appears. I think for most people with PMLE, it normally takes a few hours after sun exposure before the rash appears. Sun light is partially blocked by window glass, but not completely. The windshield of cars normally have about 99% UV-block and high range cars also have UV-filters in the side windows of the car.

Parts of your body that are often exposed to the sun, like your face, are normally less affected.  Thanks for posting the picture, it looks very much like my own rash.

Take care!

/Richie

Offline dibdob123

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #47 on: Thursday March 17, 2011, 09:09:23 PM »
Hi To All my Fellow Sun Dodgers

Well it's spring here in the UK and the Sun has just started to come out over the last few weeks.

Quite a bit has changed since the last time I posted on here, I have become a mummy, my son is now 15 months old and I cannot believe how quickly time has gone!!

Due to being a new mum last year I decided not to go ahead with the UV treatment for four weeks a the beginning of Spring as it was just too much of a hassle with having a 3 month old.  As I was off on maternity leave I was able to get out into the sun most days, at least when it was out, and slowing but surely try and get my skin used to the sun.  At the start of spring, I did react quite badly to the sun, but rather than keep covered up I just kept applying suntan cream and carried out exposing my skin to the sun.

It sort of worked, obviously I couldn't stay out in the sun like a "normal" person, but I would recommend anyone who has previously stayed out of the sun to get back in it, just a little at a time. 

I did have a few major breakouts over the summer where I overdid it slightly, oops!! 

I am already reacting to the sun this year on my hands, normally I would cover them up with gloves but I think the more exposure they get they better.  It's still not warm enough to wear short sleeves but as soon as it is I will make sure my arms get plenty of exposure too, slowly but surely.

If anyone has any other advice on trying to get through summer this please let me know.

Take care All

Debbie  :)





 

Offline AL0tT0Handle

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #48 on: Wednesday April 13, 2011, 12:25:16 AM »
Hi Nora

It's great to hear from you, sorry to hear you are also a sufferer of PMLE.  You like me are able to control it with sunscreens but I am the same, I don't like being controlled by it and it is also very easy to get caught out which I quite often do.  I can't believe so many people in your family suffer from it, as far as I am aware I am the only one in mine.

I haven't been offered a steroid injection before, but have to say wouldn't be overly keen on steroid injections without researching it fully first, also the tablet you have been taking is a treatment for malaria, I think I will discuss both with my dermatologist the next time I see her. 

When you say the normal sunscreens, what does your dermatologist recommend for you?  I am normally advised to ensure that titanium dioxide as one of the main ingredients, would be keen to know what you use.

With regard to your lip, I'm not sure if it is anything to do with PMLE would be worth getting it checked out. 

Look forward to hearing from you soon


Debbie


Hey Debbie! Thought I'd pipe in here. I've been getting a steroid shot, on a Prednisone regiment, along with taking Loratadine and Famotidine every spring/summer for YEARS. What I've run into is that that concoction of medications is extremely unhealthy for you (SEVERE weight gain, bleeding ulcers, totally depleting your bones...). It was fine back in NJ/PA when I had no insurance to see a dermatologist, and I only needed the treatment for a few months, but now that I live in NW Florida, taking that 9 months out of the year isn't an option. Even in the 3-4 months I'd be on the meds, I got a definite glimpse of the weight gain....and it takes a VERY long time for it to go away. Anyway, I doubt your dr will go for this "treatment", being that my new dr. is now refusing to do it for me, even for the time being until I can get an appt. at a dermatologist. Just thought I'd chime in, sorry is wasn't good news, I know how heartbreaking dealing with this is.  :(

Offline Island Girl

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #49 on: Friday May 06, 2011, 11:32:08 AM »
Hello, I'm so glad to find this online community of fellow sufferers. I've had what I'm sure is PME for about 20 years, but the dermatologist I used to go  to had never heard of it. I researched skin conditions on the Internet and am positive that's what I have. In fact, I'm suffering from it right now, on my legs, after a 15-minute walk on the beach with friends.
It occurs on my legs, arms and chest, never on my face (although I have enough other skin problems on my face, including a host of basal cell cancers and actinic chellitis on my lips). The bumps are extremely itchy and red -- in fact, filled with blood. The really unfortunate thing is that I live in the Caribbean. Most of the time I'm covered up, with long sleeves, long pants and a hat, but it's sad being the only pale person on the island!

I have a new dermatologist in the States and will ask her about options, but she's already upset that I live in the Caribbean -- why not Alaska, she asks -- with my light skin and propensity for skin cancers. (I have so many scars from surgeries I look like Raggedy Ann.)

Anyway, I'll be monitoring this site frequently to see what's new. For now, just glad to know I have company!

Offline merrymom

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #50 on: Tuesday May 10, 2011, 09:23:08 AM »
Hello! I'm so excited to have found this forum but I'm not sure if I'll find anything out I haven't already researched myself...my son has pmle. He turned 6 this year. He has had it since birth and it took until he was 5 and me being very insistent to a few doctors that we had eliminated every other possible irritant/allergen other than the sun. Had one doc tell me it wasn't possible for him to be allergic to the sun, another that said oh yes that's classic pmle when looking at where the side of his face burnt from the 5 minutes in the non-tinted car. Only to tell me that was all she could do was diagnose it because it was beyond her level of expertise. So - we finally met with a pediatric dermatologist from Riley's Childrens Hospital in Indy and - he was printing me out a pamphlet from mayo clinic online!!!! My mind was blown!! Like I hadn't already researched online!!

He did tell me that my sons case is probably one of maybe half dozen severe cases in the entire area and the most severe case he had seen in his career (and he looked like he may be working past retirement age). My son also has excema and his skin is so sensitive I cannot even use laundry soap or fabric softener - I use soap nuts (yes they are real) and I line dry the clothing. Only thing I have found that works for sunblock that does not break him out is compounded at the apothecary titanium dioxide only main ingredient mixed at 20% and it costs me nearly $60 an ounce. Ouch.

Anyone else know of a child with this condition? It's extremely difficult to try and explain to a child that wants to play ball and ride his bike and swing, etc - that he just can't do it without his sunblock, floppy hat, sunglasses, etc. If he is in the sun even for only 5-10 minutes he gets pink and itchy and usually within 2-8 hours he is swollen, broken out in scaly raised red patches covered in tiny blisters. He will even get puffy to the point I thought we were going to end up at the ER the first time he got it really bad - his eyes were even swollen shut. Doc also said his reactions were so severe that he didn't feel it would even be safe to do any type of phototherapy/light treatment because of the possibility of that severe of a reaction...

Not sure what I'm looking for , just any advice anyone is willing to offer would be greatly appreciated...it's hard when a 5yr old calls himself a vampire =(

Offline merrymom

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #51 on: Tuesday May 10, 2011, 09:03:45 PM »
Okay one more question - where do you go for treatment and/or diagnosis of pmle?? I'm in southern Indiana and NOBODY here knows what to do with him - and the doc at Riley's Childrens Hospital in Indy was baffled also..

Offline AL0tT0Handle

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #52 on: Sunday May 15, 2011, 08:32:14 PM »
Hi! I know this probably isn't the answer you're looking for, but from everything I've researched and been told by doctors (I personally haven't gotten to go to a dermatologist yet, but I have a friend who's case is MUCH less sever than mine, and has been to a derm.) there really is nothing you can do. For some people on here, special sunscreens help, this or that makes it a little less worse...but for me, NOTHING makes a difference (aside from a very unhealthy steroid regiment). I seem to be able to relate to your son's case more than most on here. Although i didn't have it from birth, I did start developing this fairly young...I'm going to say between the ages of 10 and 12. It's hard to be able to go outside without worrying, then suddenly, you just can't any more. :(
I mean, you could ask about the steroid treatments (if you haven't already). To my understanding (I have been through so many things to try to get past this) the steroid treatment is used to block the reaction long enough to try to get your body used to the sun. For me, the positive was while I was on this regiment, I could go outside and NOT get the rash! The negative was that it did not "desensitize" my body/skin to the sun. If he hasn't been through that treatment already (I know you said you were worried about a severe reaction), I would suggest giving it a try. Anything is worth trying, in my opinion.
As I understand it (I believe this is correct, but I wouldn't want to mislead you in case I did understand something wrong and just don't realize it haha):
- You get put on 3 medications (names might be different, but they'll do the same thing)- Prednisone (steroid, this blocks the allergic reaction), Famotidine (aka: Pepcid...the Prednisone, over longterm use, cause sever weight gain, bleeding ulcers, calcium deficiency...The Famotidine is just protection for the stomach while you're on the steroid.), and the third one is Loratadine (which is an allergy medication...the sun is our allergy...it helps block the reaction as well).
- the prednisone is a tapered thing. For example, you may start out taking 2 tablets, twice daily, for -x- number of days, then one tablet, twice daily for so many days, one tablet daily, 1/2 tablet daily... As it tapers down, depending on your severity and whether or not your body is accepting the treatment and becoming used to the sun, you run the risk of getting the rash--HOWEVER, it doesn't come on as severe because the medication is still in your system.

If the dr. does do this, they may be hesitant. It's used to try to see if your body CAN become used to the sun (I was told it could take 2 and MAYBE even 3 tries before it could work), or used temporarily due to vacation or something... It's hard because once you see it works, you never want to get off it! But because of the health issues it can cause during prolonged use, it shouldn't be done. However, even if you son is like me, at least you know taking him to the beach could be possible, as long as he's on those medication and they work for him as well... It's hard for me, at 21, to deal with, I could only imagine what a 6 year old goes though, not to mention your family. :-\

Sorry I couldn't be the bringer of better news, but if you haven't tried the medication regiment I suggested already, it's definitely worth a shot. Even though I gain weight like CRAZY (or physically, bloated like, than in the numbers) those pills are my BEST FRIENDS because they mean I can have some freedom and be a normal person, even if I only take them for a day or two :)

Offline e7rick

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #53 on: Monday June 06, 2011, 10:31:44 AM »
Hi Merrymom!

I really feel sorry for your son - it must be terrible to be diagnosed with this condition at such a young age. I live in Sweden, so I don't know any clinics in the USA, but my condition is also very severe so I will try to give some advice that might be helpful.

The first thing to do is to protect yourself from the sun. Last year I found this sunblock with Mexoryl XL (Capital Soleil spf 50+), which is a broadband UVA-filter, thus the sunblock works well against both UVB and UVA. It is also very transparent in the visible spectrum, thus making it next to invisible on the skin. I use this whenever I have to be outside for more than 10-15 minutes. In addition I take antihistamine tablets, which don't prevent the allergy from appearing, but the rash is much more bearable. I have been taking Clarityn with the active substance Loratadine and it has worked fairly well for me. However, I recently read that someone thought the active substance Cetirizine was much better, but I haven't tried it yet.

Of course, I always wear jeans/pants and long-sleeved shirts.

Hopefully your son's condition will improve with age, since he got it so early in life.

/Richard

Offline Nora

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #54 on: Monday June 06, 2011, 06:39:06 PM »
Dear Merrymom,

I can relate perfectly to your son's predicament. I was also diagnosed at a very early age, although I never heard the actual name PMLE until I started seeing a dermatologist as an adult. My parents took me to see all kinds of doctors and I remember my mother crying more than once when insensitive doctors told her there was nothing she could do to help me. This was more than 30 years ago, so imagine the level of ignorance about the disease back then. Finally someone recommended an allergologist in a city 8 hours away from where we lived, and he was my doctor during my childhood. I started seeing him when I was 5.

This is what I can share with you as a long-time sufferer of this disease. First of all, I came to terms with the fact that I would have it forever when I was a little girl. It wasn't difficult for me to understand that because both my father and my grandmother have it, even though mine is more severe.

What my first doctor recommended, and I still remember to this day because that's the way I lived my childhood, was:

1. Wearing a hat, carrying an umbrella and wearing sunglasses whenever I had to go out.
2. Wearing long sleeves and high collars, long pants/skirts to prevent unnecessary exposure.
3. Using an ointment every night on whatever rash I already had. The one he prescribed back then was called Diprosone Y and he told me clearly I had to use it at night because it couldn't be exposed to sunlight. This habit of only using creams and ointments at night has been a hard one to break, even now that there are other alternatives available that are ok to use during the day.
4. Using heavy water-based creams/lotions to keep my skin hydrated. Nivea was highly recommended back then.
5. And of course, a sunscreen, which 30 years ago, in Mexico, wasn't so easy to come by.
6. My parents were told to keep me out of the sun as much as possible between 11 AM and 5 PM. That meant I was only allowed to go out and play after 5 pm. It also meant that if we went to the beach, my father would keep me in the shade between the peak sun hours to minimize exposure.

My doctor said there was a possibility that things would improve during my teenage and adult years, but I'm sorry to report that wasn't the case.

As an adult, I started seeing a local dermatologist, and he had actually done his residency at a children's hospital, so he was familiar with the disease and gave me a name for it right away (so far I'd only known it as my "sun allergy").

This is what I've learned from my dermatologist:

1. Wear sunscreen at all times, he recommends La Roche-Posay sunscreens and those have worked great for me. Wear a separate sunscreen for my lips, which were badly damaged by years of not wearing anything on them. I always had a rash on my lips before I started doing this.
2. As a preventive measure for vacations in the sun, my doctor has prescribed both Aralen and Plaquenil, taken once daily. I have to tell you, my skin feels different under the sun when I take one of these pills, it doesn't start prickling right away, the sun feels "less hot", if that's even possible. I have tried both and like Plaquenil better. Both do a good preventive job, but I still have to be wear sunscreen.
3. Aloe vera gel to soothe my skin after exposure. This has been helpful in controlling the itching some.

Now, there's one more recent discovery I made after reading what other people are doing, and this really has made a difference for me: taking vitamin E and betacarotene pills every day. I was recently on a sun-intensive vacation and only broke out one day. After sitting in the open sun for about 2 hours, since I was wearing a white shirt, my back broke out terribly, it was really bad, since I hadn't applied any sunscreen there. I applied aloe vera that night and took a cortisone pill (Meticorten). This usually helps a little but the rash will stay with me for at least a week, being very itchy. Well, this time, the next day the rash was significantly improved, I had no itching, and it was completely clear by the third day. My husband said that was almost a miracle! The only thing I had done differently from other times was that I was taking Vitamin E and betacarotene.

Good luck in your quest to help your son cope with this disease. I am very grateful for everything my parents did for me when I was a little girl, and I know your son will also thank you one day.
« Last Edit: Monday June 06, 2011, 06:44:24 PM by Nora »

Offline geralyn

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Advice from a long-time PMLE suffferer
« Reply #55 on: Friday June 10, 2011, 06:19:28 PM »
I developed PMLE when I was 4 years old, after a severe sunburn.  I have been severely sun sensistive since then.  I'm 53 years old now.  I'm one of those who breaks out (that's what I've always called it) with a minute of unprotected exposure.  The stories of growing up with this are many, but what's important is where I have ended up.  I thought sharing what I have learned might help some of you.  I'll only mention what I have not commonly read in this forum, so as not to bore you.  Too, what's good for me may not be good for you, but it may be a place for some of you to start.

Here goes:

Most PMLE sufferers are reacting to UVA light.  UVAs are present year round, and go through glass and clouds, as you've probably all experienced.  The most intense UVAs, though, are present in the spring months, March, April, and May in the Minnesota latitude, due to the position of the earth's axis.  As summer rolls around, the earth tilts a little, and the UVAs are less intense. This is why you have less problems in the summer and winter, not because you have "hardened" to the UVAs, like most of the literature says, in my humble opinion. An interesting theory, anyway. This may be why "hardening" with tanning beds has not helped a lot of you.  It may be bunk.

Now, why don't the broad spectrum UVA/UVB sunscreens that have been out for decades not helped most of us?  It is because the main terrific UVA sunscreen ingredient, Avobenzone (Parasol 1789) breaks down when exposed to sunlight...that's right.  The good news is that they have added another photostabilizing ingredient now, typically named Mexoryl, that very effectively stablizes Avobenzone.  The strength of that photostabilizer in US sunscreens, though, is not good enough for everyone, if some of you have noticed ineffectiveness.  You need to buy the product from Canada, Europe or Austrailia where there is at least 2-3% avobenzone and 3-4% Mexoryl.  Read the ingredients labels.  I get mine on the internet now, usually through Pureskin.com (I used to drive to Canada to get it...) Titanium dioxide is the icing on the cake for those of us who are the most sensitive.

I use:

Anthelios SX Daily Moisturinzing Cream with sunscreen SPF 15 (just Mexoryl) for day-to-day functioning (in and out of sun for brief periods of time). Not greasy, and doesn't rub off.

Anthelios L SPF 60 Total Block (Mexoryl and titanium dioxide) for extended time in the sun beyond 5 minutes.  Can be a little greasy on your face, wears off in water, leaves you a little white, and rubs off easily, but definitely let's you go out in the sun.  If you are severely sun sensative, you'll put up with the cosmetic downfalls for the freedom it offers.

I liken Mexoryl to a suit of armor.  Prior to using it, I could never be in the sun, and now there is no limit for me.  I've been to Hawaii and the Carribean, and have been in the sun for 8 hours straight.  It has normalized me.

So that's all I know.  There is another forum site I found that provides great information about sunscreens and this condition: http://health.groups.yaho.com/group/sun1   Check out the info on the left-hand side.

Good luck to all of you.  Because of these sunscreens now, it is possible to live a perfectly normal life with PMLE. I have not tried any of the malaria drugs people have talked about on here -- I've known about them for a long time, but am going to look into them again, so thanks.



Offline Peggyjune

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #56 on: Monday September 26, 2011, 04:30:25 PM »
Hi there!
I am a born and raised Californian near the beach with fair skin.  I'm 48 and have PMLE since I was a kid.  Believe it or not,  I didn't know there was a name for it until just recently.  I've accepted it as "the way it is" and stayed out of the sun as much as I could.  When I couldn't, I'd just endure the itchy, bloody welts for the next week.
 
To stop the itching, ICE was the only treatment that would stop the it.

To prevent it,  just stay out of the sun.  Sunscreens are better now.  It took a long time for the US to approve it.  I was buying it on-line from France for $100 a tube while the US was busy "studying" it.
My kids are grown and out of athletics.
My husband is filipino and my kids (4 of them) don't have PMLE.

ICE is still the fastest and easiest remedy for me.

Peggy

Offline GAskin

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #57 on: Friday September 30, 2011, 07:12:03 PM »
:(My goodness, this polymorphic stuff is sad, sad, sad.  I actually have an active case of Granuloma Avuulare right now which is why I joined this group (I am new as well).  However, I have had the odd outbreak of this polymorphic stuff.  We winter in Florida and I have been caught out in the sun without effective sun screen (long story; it was confiscated at the border and the replacement that I got didn't work and actually combined with the sun to make it worse).  I have fibromyalgia as well, which is why, they say that I have the Granuloma Avuulare.  I have noticed that the only time that the GA breaks out is when I have to take antibiotics or get an immunity shot.  I am now afraid to take this years flu shot.

Anyway to get back to the polymorphic stuff.  They gave me cortisone cream to calm it down and it eventually went away.  I had a really bad case on the v of my chest and on the upper parts of my feet.  It was very, very itchy.  I have since had minimal outbreaks when we first go to Florida but if I ease into the sun I can tolerate 30 minutes before noon without an outbreak.  After that it is sunscreen, sunscreen, sunscreen.

The sunscreen that I have found most effective is L'oreal Ombrelle.  I have used it for years.  It is not available in the US (there is an ingredient in it that is not allowed in the states) but the lady going to New Brunswick can get some.  I have also used the Vichy that one of the ladies is talking about and I found that almost as effective as Ombrelle.  I actually like it better because it is not as oily on the skin as Ombrelle.

I am also trying out something else.  I am putting asorbic acid (vitamine C) in my skin cream that I use night and morning and after putting that on my usual places (face, neck, etc) then plastering it on my GA after I put on the cortisone cream (a few minutes after so I don't wipe away the cortisone cream).  I intend to use this asorbic acid liberally from now on.  I got it in the form of a fruit preservative called "Fruit Fresh" in the grocery store I also read something interesting on the web at: http://www.al-hikmah.org/photosensitivity.htm as follows:

Evidence that vitamin C and vitamin E may help prevent sunburn in people without photo sensitivity provides indirect evidence that these substances may be helpful for photo sensitivity as well. However, a small double-blind placebo-controlled trial of individuals with polymorphous light eruption found no benefit with combined vitamin C (3 g per day) and vitamin E (1,500 IU per day).

So, maybe vitamine C internally and externally may help.  They say that if you use asorbic acid you have to mix it in the skin cream just before you use it and don't make a big batch because it disintegrates quickly so I just sprinkle the asorbic acid powder into the cream and mix it in my hand and then put it on.   They also warm to start out using only a bit at first because it can irritate the skin.  I find that it prickes and invigorates the skin.  Anything that invigorates when you have fibromyalgia is welcome.

Hope this has been helpful to someone.

My best to you all;

Sharon

Offline GAskin

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #58 on: Thursday October 13, 2011, 05:40:08 PM »
I just thought that I would update on my use of ascorbic acid (sprinkled in my daily moisturizer).  It felt good when I put it on so I continued to put it on.  It resulted in "contact dermatitis" !!!!  The same thing that happened to me in Florida using Neutragema sun block.  I guess it might have had vitamin C in it.  I had to use the strong cortisone cream that I use for my GA on the rash.  It went away in less than a week.  But was it ever itchy!!!  So, I guess ascorbic acid is out for me.   If anyone tries this take care. :(

Offline e7rick

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Re: Hi I'm New (Polymorphic Light Eruption- PMLE or PLE)
« Reply #59 on: Saturday October 29, 2011, 10:19:43 AM »
Hi Sharon!

An interesting, but somewhat crazy approach!  ;)

Too bad it didn't work - it would have been fantastic.

Take care!

/Richie