Shirudo Antioxidant Lotion

Shirudo Antioxidant Lotion
PMLE Symptom Prevention! With AGR!!

ABC Pure * Safe * Beneficial

ABC Pure * Safe * Beneficial
Arbonne Baby Care Set

Wednesday, April 21, 2010

PMLE Update - Just in Time for Summer!

**NEWER 2012 Update with my personal experiences - and in attempt to respond to some of these amazing and helpful comments is coming today!  I'll post a link here!**

**READ Sept, 2012 post {HERE} about a new lotion with AGR!!!!

First of all, I want to say a big, gigantic THANK YOU to all the readers and comments on my original post {here} regarding PMLE!!  It is so so helpful to hear from others who suffer from this and all the wonderful prevention ideas!!  If you haven't already done so, please check out that post for additional updates I've made, alopng with the many many wonderful reader comments and suggestions!  I promise you... there are others out there who suffer from this who are also looking for anwers! 

I feel like I'm going into this summer with a new sense of hope.  That is why I am updating and re-posting about this now!   Here are some specific ideas/ products we have discussed or have had suggested to us regarding the prevention of PMLE!

* Heliocare/ Solaricare Pills
* Claritin
* Beta Carotene (and any anti-oxidants both topical and orally in general)
* Niacin
* Vitamin E oil (topical)
* Parasol (avobenzone)
* Alphaglucosylrutin (AGR) **if anyone knows of ANY product containing this, in the US or otherwise, PLEASE let us know!  It was in the Eucerin Daily Sun Defense Lotion, which is no longer available!)**
* Spectraban Oil/Lotion

Also notable as preventitive:

* Higher SPF sunblock
* Sun hat / umbrella
* Slowly building up your skin's tolerance to the sun

Please check out the new updates at the original PMLE post and especially the comments for additional info and suggestions!

BIGGEST NEWS YET!!  My recent 2-week trip to Sunny California...

While sunscreen shopping for this vacation, I made a HUGE discovery. 



Did you notice that the Banana Boat Clear Ultramist Dry Oil Sunscreens now contain Avobenzone!?!? Even the SPF 4 has 0.5%, with 3% in the SPF 15!  There is also 3% in the Baby SPF 50 formula, so I suppose that's the most any of the lotions/oils contain.   The avobenzone is part of Banana Boat's "Avotriplex" photostable UVA technology.  (go to BananaBoat.com for all their products!)

I checked my sunscreens from last year (even from Banana Boat) and they do not contain the avobenzone... however, the Baby SPF 50 formula did.  Needless to say, I've now switched to using only this Banana Boat Dry Oil Spray in SPF 4, 8, and 15.  I haven't checked to see if the Spray Lotions by Banana Boat also contain the "Avotriplex" technology.  This is a big deal considering it was nearly impossible to fund this ingredient (which is also called Parasol, but the way) in any sunscreen below SPF 30+!  I will also mention that Arbonne's Face and Body SPF 15 also contains this avobenzone... and I'm sure there are others.

Now, what does this mean for us?  Well, for one, there is now an SPF 4 and 8 option for those of us that still want to get a nice tan, but try to prevent this nasty little rash from appearing!   So what happened for me?  I started out our vacay by using the SPF 15 Dry Oil all over, even on my legs, which I never do (I know.... I'm bad!)  Slowly, as we headed to the beach more, I began knocking the SPF down to 8 and kept it there most of the time.  the last few days I used SPF 4 on areas I would normally not use any sunscreen.  The result?  A really great tan, no burning, and most importantly NO PMLE rash!!  Yay!  This is especially notable beacuse it was early in the season, which is when we are all MOST prone to developing the symptoms the worst.

I also took Beta Carotene pills while we were in Cali, but that was it, as I didn't want to take anything else (since I'm preggo) and I really wanted to test out my new sunscreens!!  I didn't even use my beloved Eucerin Sun Defense lotion (which I bought from Germany.... see original post for more info!) which I've sworn by for years!  The ONLY thing I must mention is that I wasn't exposing my stomach to the sun (for obvious reasons.... no one wants to see that... not even me) which is the area I'm second most prone to developing the rash, next to my chest.  Sooooo, that one will have to wait until next year, but I am still thrilled with my new plan of action in the sun!

Bottom Line:  Before going on a beach vacay, from now on I will start taking Beta Carotene a few days before on through the vacay, and use a sun lotion with avobenzone in it as a moisturizer for a few days before leaving to prepare my skin.  A derm doc recommended this to me with the Eucerin back in the day, so I think I'm going start doing it again.  Once at the destination, I will start out using an SPF 15 all over (with the avo ... that goes without sayings) and then knock down the SPF during the week as I build up my skin's sun tolerance.   I will also bring a hat to help shield my chest for when I feel like wearing it, because I know that helps, too!

Regarding the Heliocare Pills, I am going to try those next year when I'm not pregnant.  Has anyone else tried these with any luck?  Regarding the AGR, I have no idea why, but it seems to be pulled from all US products, and possibly overseas, as well.  I'm still trying to figure out why, because accordign to my research, there have been a TON of studies that show AGR significantly helping to prevent PMLE.  My sister is in pharmacy school right now, so I'm putting her on that right away to try and figure something out!


Finally, keep the comments and suggestions coming!  And, thanks for reading!

59 comments:

Donna said...

Have a fancy banquet to attend this weekend and since I didn't get any tan during our Aruba trip (I used the SPF 70 and still got rash) I decided I need to go to the tanning booth so I didn't look anemic in my pretty grey dress. So on your suggestions I took Niacin, Beta-Carrotean and Lypocene, along with my Zyrtec (Claritin doesn't agree with me)for the past 2 weeks. One in the morning and then one beta-carotene and lypocene in the afternoon. I know tanning beds are bad and I haven't been to one in six years since this PMLE started. So I investigated and found one that has the stand-up booth and has special lights that only emit half the UVA and UVB rays. I went three times this past week for 7 minutes each session. First session I got a little red but not bad and no rash. Same with the last two. And I'm tan! Even parts of me that haven't seen the sun in years! So I think you're on to something with the supplements. I'm on the lookout for the SunPill but my Target doesn't have it.

Now onto another subject.... the supplements. All the supplements are good for you for reasons other then PMLE. But, has anyone else used this regiment and had digestive problems? I mean like only eating if the loo in within feet of you? I couldn't figure out what was going on. I investigated and found no info on any of the them giving you IBS, etc. So last week I was telling my sister about this and she said to check the bottles and see if they have magnesium stearate? Yep, the Niacin and both Claritin and Zyrtec. And the Beta-Carotene and Lypocene have soybean and corn oils added. Well, magnesium stearate and the oils are added so people don't get constipated! My sister can't take certain calcium pills because of the magnesium stearate. Her gastro doc told her to read everything on the bottles. So, I'm now looking for these supplements without the added ingredients. Good news is that when you quit taking them it stops. Just wanted to add this tidbit of info in case someone else was having the same problems.

Lindsey B. said...

Donna: Thank you for sharing and congrats on the tan! YAY! I prefer the stand up beds now, if I'm going to go to the tanning bed... good for you for doing your own research on which bed would be best for you before actually going!

Thank you so much for mentioning the possible digestive issues behind the supplements... definitely something to note and possibly try to avoid by finding all-natural supplements!

Again, thanks for stopping by!!

Meghan said...

Stumbled upon this blog a few days ago and love it. Suffered from sun poison while I was growing up (at least I think it was sun poison), had a few years where I didn't get a rash, and last summer I suddenly broke out it what seems to be PMLE. The rash is so...frustrating! I broke out all the way through November this past year.

Just the past weekend I was celebrating the 4th with my boyfriend's family on a boat. I stayed under the canopy the entire time and by the end of the day had broken out into my worst case of the rash yet (it came out on my legs too this time...a first!).

I've taken note of the supplements everyone has suggested and have started taking them hoping to see some improvement, especially because we are taking a trip to hot and humid New Orleans at the end of the month. I'm currently taking Niacin, Beta Carotene, and Vitamin E tablets. I also ordered those Heliocare pills off of amazon.com (for about half the price), along with the Ocean Potion Anti-Aging Sunscreen with Parasol in it. I really hope these things help.

So happy to find others with this issue who don't want to settle with being stuck inside all summer. Finally...people who understand!

I'll keep you posted on my progress. Thanks again...

Anonymous said...

Hi, I have been suffering from PMLE for about 30 years since childhood. Thank you for your wonderful blog! I can spend about 1 to 2 days in sun before horrible itchy rash. Anyway, I once did 2 to 3 months of PUVA light treatments at my dermatologists office prior to a 10 day sailing trip in the Virgin Islands. For the first time I did not get the rash!!!!! However, the PUVA treatments are very, very time intensive. We are going to a wedding in April down in British West Indies and I will try some of the products you suggest. Have there been any updates? Has anyone had success with Heliocare pills? Thank you.

jennifer said...

Will try some of these tips before my upcoming trip. My derm also suggested Anthelios sunscreen - said he has seen more success with that since it blocks more UVA. Would love to hear results of anyone with the Heliocare pills.

Anonymous said...

Eucerin still sells product with AGR in Switzerland and Germany (I'm sure about Switzerland as I see them in Drugstores and they are on the German website). They have the 25 spf Creme-Gel (they dropped the allergy from the name) and the after Sun Creme Gel. It appears they dropped the spf 15 creme-gel, which is a shame. Just go to www (dot) eucerin (dot) ch-> produkte -> Sonnenschutz

Anonymous said...

I would recommend trying Neutrogena Age Shield SPF 90 with Helioplex ($10.99, Amazon.com). I know the SPF seems high but I'd use it on the areas most prone to the rash and of course the face. I'm going to buy some. Most experts will tell you that after SPF 15, the increases are minimal.

Anonymous said...

Hello, I am 20 and live in the U.K and have just been diagnosed with PMLE.. :(.
As for most people all my docotr has said is " stay out of the sun" basically!
My rash developed in 2008 and have only just found out what it is, before that i had beautiful skin in the sun!
I have booked a holiday to Egypt in June and I really would LOVE LOVE LOVE to be rash free!
What has everyone found the best?
I've read about heliocare and suncream which contains mexoryl?
If i take heliocare will i still tan?
Regarding the Banana Boat cream which one specifically have I got to order?

Many Thanks
Gemma xx

Lindsey B. said...

Thank you everyone for the helpful comments! This summer I plan to post (and hopefully others will too!) about how certain products work!

Anon on 3/12: I do believe we can still get a tan with heliiocare - from what I've read, it might provide a VERY low SPF, but not enough to ditch the sunscreen!
I would purchase ANY sunscreen containing "AVOBENZONE" - that's what I have had the best luck with. The Banana Boat Dry Oil Sprays are specifically what I have tried and LOVE! But I would try any lotions/cremes/sprays containing avobenzone. The thing I loved about the Banana Boat sprays is that they had the ingredient without a super-high SPF! Hope that helps!! :)

Anonymous said...

Hi! I would first like to say that this site has been so awesome and incredibly helpful throughout my PLME discovery. I just found out yesterday at my dermatologist appt that this annual issue I am having is PLME. I never tend to get it severely, and I ONLY get it on my FIRST vacation post winter, then I am done. However, it often put's a huge damper on my initial vacation after the winter season and I get over anxious about its arrival, so I am looking to avoid it when I head to Florida at the end of this month.

I looked into the heliocare pills, however I can't seem to get many reviews from people who have actually used them, so I am not sure it's worth the expense just yet. I intend on using all other advice, including beta carotene and vitamin E oil (topical).

My last thought, and I realize it might seem totally silly, but I am interested in opinions...do you think using a tanning bed for very short periods of time while wearing a high SPF prior to the trip could be beneficial? I never go tanning, however this seems like it should be a logical way to "harden" your skin while protecting it, and it will also prepare it to the shock of the heat/sun. This could also have the opposite effect which is why I am looking for opinions or anyone who might have tried it.

Thanks for all of the insight, it's been wonderful :-)

Anonymous said...

Hi everyone! I have had PLME for 4 summers now. It was only at the end of this last summer that I finally found a doctor that diagnosed it. The doctor prescribed a cream to put on the rash and it completely cleared it up for me. I can't remember how long it took, but I think daily use for a couple weeks. Eventually I think I was able to stop using it all together and the rash didn't come back. Though perhaps this might also have been due to summer coming to an end. The tube I have is Taro brand. It says its Fluocinonide Cream USP .05%. I did need a prescription for it.

I booked a vacation for the end of May for Florida. I was looking online for some preventative ways to deal with PLME, as I expect it to return on this trip. Although the cream worked last summer after I already had it, I want to try to avoid getting PLME all together. I remember the doctor saying to go out side for a couple minutes everyday for the skin to build up a tolerance. Has anyone tried this? Did it work? I also can't remember if the doc said to put sunscreen on or not.

I am also a pale person to begin with. I have been thinking about going to a tanning salon before my trip to at least prevent sunburn. I was wondering the experiences people had with tanning beds. Did it cause the rash to come or did it help to prevent it by building a "tolerance"? Also wondering what the difference between the light treatments at the doctor and a tanning bed are.

I don't think I will try any of the vitamins for trip. I will see how the tanning beds go, and I will try to expose myself to some sunlight everyday before going. Thanks for all the tips too about different kinds of sunblock. If the PLME returns I will try that prescription cream again to see how well it works and report back.

Good luck everyone!

Anonymous said...

just wanted to let everyone know i have been taking the niacin,beta carotene, and zyrtec the vitamins twice daily and using dry oil tanning lotion with avobenzone in it, and i am sucessfully able to go to the tanning bed without a rash it is so great. I would have not been able to do this without all the good info keep it up.

Anonymous said...

i tried to use the tanning bed without the vitamins,zyrtec and dry oil with avobenzone it was ok the first few times and then the rash and itch became unberable do not go without the vitamins and dry oil i was ready to give up on tanning untill i found this web site you have been so helpfull keep up the good work.

Anonymous said...

I have had PLME for over 13 years. I just recently found a website that was so informative about sunscreen and what is in it that makes plme worse such as oxybenzone. Also it educates about our sunscreen in the us and the fact that most broad spectrum sunscreen has very little UVA block in it which is the main factor in PLME.. This website rates sunscreen and you maybe amazed at what yours is rated. My dermatologist recomment my buy the La Roche-Posay, but from this website it is far from the best. I purchased Blue Lizard Sensitive skin and just return from a week at the beach and was in the sun and water all day everyday and NO PLME! Very Impressed with the Blue Lizard.
http://www.ewg.org/2010sunscreen

Eric said...

Some great info on this blog, thanks! I have HelioCare ordered and will be picking up some Niacin and Beta-Carotene.

I did some research, and I think you can purchase Alpha-Glucosylrutin (AGR) containing Eucerin Sun Allergy Protection Cream (25 SPF) from Le Guide Sante (http://www.leguidesante.com/cream-150ml/products_7855.html).

It's a French-based drugstore, but they have versions of their site for France, UK, Russia, and the U.S.

I'm not sure on the shipping rates, but the site looks pretty legit.

groovyoldlady said...

In 2+ weeks I have a 3 day cycling event. I keep praying it will be overcast or rainy!

I can keep my arms/legs/chest covered. but it is impossible to protect my neck or face with anything but sunscreen. I started taking high doses of beta carotene yesterday and will use a sunblock with titanium dioxide.

Here's hoping for the best!

Anonymous said...

I have had PMLE for at least 10 years. I have tried the Heliocare and another brand that has the same stuff in it for a whole summer. It did not work for me at ALL! This year the derm wanted to do the UVB light but insurance would not pay. He wants me to take Plaquenil but I am not sure about that. I think I will try the beta carotene. I use La Roche Posay and it works ok. Nothing works great for me except being a vampire and avoiding the sun.

Anonymous said...

I just got back from a two week vacation at the beach and didn't have a reaction!!!! I used everything plus the kitchen sink:
* Sun Pills (two in the morning, one more in the afternoon)
* Beta Carotene
* Niacin
* Green Tea Extract
* Sunblocks with Mexoryl helped -- La Roche Posay, L'Oreal Ombrelle
* Wore a big hat and sunglasses the whole time
* Went tanning in a sunbed that was as close as I could get to natural sunlight for about 6 weeks prior to vacation (cost about $120)
* Lycopene supplements
* "Yes to Tomatoes" lotion
* Vitamin E oil

I basically used a cocktail before going out in the sun every day -- a layer of the Yes to Tomatoes lotion on all areas that normally get the PMLE reaction, then a layer of Vitamin E oil in the same areas, and then the sunblock with Mexoryl. Then when out in the sun, every hour or so I'd add another layer of sunblock.

The sunblocks did tend to leave a white-ish film on my skin, but I felt like a movie star in my big hot pink hat and Jackie-O sunglasses.

So at this point I don't know for sure which part of this equation worked and what was just overkill, so I may start removing parts of it for future sun exposure. With the tanning, I'm hoping I'm all set for the rest of the summer. July 4th weekend will tell.

But I am counting this a HUGE success!!!

Thanks for all the advice and tips I've found here that contributed to my two PMLE-free weeks at the beach!!! Woo-hoo!!!

Gudny said...

Hi all

I've been searching online to figure out what I have and just found the name for it yesterday and soon after that found your site.

I have not worked much on prevention but one thing that works extremely well on the rash after it appears is cold water in a towel.
I have had a lot of sunburns over the years, due to my fair skin and red hair so I am an expert on treating sunburn and I treat the rash in the same way with good results. I find it very difficult to sleep due to the itching. What really helps is to wet a towel with cold water (it is enough that it is damp) and then I roll it around my hands and arms where the rash is the worst. I then roll a dry towel on top of that so that my bed don't get wet immediately. This is enough so that I can fall asleep. Of course the bed has damp spots in the morning, but who cares if you get a good nights sleep :)

Michelle said...

Hi
I have suffered every summer for the past 4 years with a "sun rash" Before I went on vacation this year I went to the derm with photos of my rash bc of course it is always gone before I can get in. She diagnosed me with PMLE. So I came home and did hours of research and got some tips from this site. I did the following:
*Beta Carotene (staring 2 days before I left)
* Sunblock with Mexoryl-La Roche Posay
* Vitamin E oil
However I also forgot my birth control at home (Yazmin). So I cant really say if it was the sunblock, Vit E oil, beta Carotene pills or birth control. Im going to bring the photo to my gyno this month to see if I could have had a photosensitivity to the pill.
All I know is that it was awesome not to be itching and uncomfortable on this trip, not to mention vanity reasons.
Michelle

Gemma said...

I am pleased to say that I have had a lovely summer holiday without ANY pmle.. considering I was in Egypt for the hottest part of summer I cannot be happier.
Let me share with you what I did:

By my dermatologist I was prescribed Mepacrine 100mg tablets one per day ( 7 days before my holiday and then continued while on holiday until I was home) VERY IMPORTANT for the 7 days before holiday. There are side effects for this drug, my urine did turn yellow which is a common side effect and also I was advised by the doctor to have an eye test before taking the tablets. Also I was advised not to drink alcohol while taking them, but that didn't really bother me.


Elocon Cream 0.1% also prescribed this I used at night before bed on the places where my pmle starts.

I used a sunbed 2 weeks prior to my holiday 3-6mins 3x a week ( i know naughty but I don't burn and only used it for 2 weeks)

I brought Mexoryl- La Roche Posay and used for first 5 days of my holiday, I also used piz buin allergy.

Aloe Vera Aftersun.

Beta Carotene from Holland & Barrat once a day, 14days prior to my holiday & while on holiday.

Also I did take the odd anti histamine, but I thought I didn't need it and stopped taking it.

And.. After all of that no PMLE.

It was well worth it :) an itch free holiday!

But when I returned to the U.K a week later I went to the beach on a lovely sunny day and unfortunetly guess what returned? Hmm.... you guessed it, so something worked what I did on holiday.

Hope this helps for everyone! xx

Rachel said...

Thank you so much for creating this site. I was diagnosed with PMLE earlier last year when I was referred by my GP to a dermatologist. I am from the UK and for the past 3 years had suffered with the horrid itchy rash whenever I went abroad. I have just come back from a 3 week holiday in Australia and am pleased to say that after getting tips from this websire, I had a rash free holiday!

I used factor 15 and 30 Banana Boat Sport sunscreen (with Avotriplex complex) and took daily Telfast tablets (strong antihistamines, which I had to get prescribed) and vitamins.

It really does work. The Banana Boat on sale in the UK does not contain the 'magic' Avotriplex complex, but it was well worth paying the extra to get it shipped in from the US.

Anonymous said...

When my 5yr old started with itchy hives after being in the sun I did some research. We used Hydroxyzine liquid medicine to stop the itching along with Hydrocortisone Valerate 2% cream. Looking for something better, our dermatologist gave us Triamcinolone Acetonide .025% cream. We are supose to use it a few days before going to the beach. In looking for something natural, I found that Eucerin made a product called Allergy Protection sun creme spf 25 for about 10 dollars in the UK but you can have it shipped to the US for about 50 dollars. There is also an Eucerin Sun Allergy AFTER sun cream if you start to break out for 11 dollars. These creams had helped us. The web site I ordered these from www.bennewitz.com/pharmacy I am going to take the time to read your page and comments. thanks. I also added your page to my sun allergy facebook page.

Anonymous said...

I have been breaking out one my arms, chest, and back for a few weeks. I started to get really irritated and anxious and went to the ER and was diagnosed with PMLE. I was glad to find this site as it is very helpful, I thank you so much!

~Erin

Anonymous said...

I have recently found out I have PMLE after 1 summer of suffering. The only thing that I found relief with (when I didn't know what it was) was aloe vera with lidocaine in it.
After I was diagnosed, my mom found this blog for me and I cannot WAIT to try the suggestions.

I have two big trips this summer (Cabo in July and Greece in August) and I am so worried about having a reaction. I did some research, and Eucerin has some products that contain Alphaglucosylrutin (just termed glucosylrutin in the ingredient list)

The Eucerin Sun Allergy Protection Sun Cream SPF 25 and 50 contain it.

There is also an after-sun cream-gel specifically for 'sun-allergy' (likely PMLE) sufferers.

Definitely going to try, along with a concoction of other things prior to trips.

As anyone tried improving sun threshold in a tanning bed? ei. 2-3 min 2 times a week? I can't get in to see my dermatologist to get his opinion for a few weeks and I'm wondering if I should be doing this as well.

Thanks!

-Andrea

Anonymous said...

Hello! I have PMLE and one thing I found very interesting that I discovered was while I was pregnant with my son I had significankt less / hardly any breakouts. I used sentivie skin UVA/UVB with zinc oxide SPF 50 and that's it. Plus if I went to check the mail with no sunscreen on I wouldn't break out like I had/have while not pregnant! I was pumped reading your post until I saw you were preggo. Literally I knotted up with excitement reading until I saw the preggo comment it loosened right up. I will be interested to see how the banana boat works for you next summer when you're not preggo.

Genevieve Antony said...

Hi Everyone, and thanks to Lindsey for bringing us together.
As with most of you, I am so happy and relieved to have found these posts and comments. It is going to be life-changing I can tell!

My Story:
5 years ago I moved from sunny South Africa to live in the (not-so-sunny) UK. My first real holiday in the sun since moving was sailing in Croatia, 3 years ago, just before my 30th birthday. After 7 solid days in the sun, it was the first time I had a proper breakout. So scary! In the past in SA I had noticed one or two little raised spots on the tops of my hands, but nothing like this. It started on my chest and then moved to my arms, back and legs.

I’m sure you can guess… those around me, including my doc, told me I had Prickly Heat. But each time I have had it since, I just could not make sense of the Prickly Heat diagnosis. It just had nothing to do with heat, sweating or blocked pores and I never had it as a child, but I knew had something to do with the sun reacting to my skins new intolerance (and suspected also a change in diet or hormones). Even the pictures online of Prickly Heat rashes did not look like mine, although there was the odd picture that did, which threw me (I now am guessing those pics are actually of PLME, wrongly diagnosed!)

I recently returned from getting married in South Africa and spent the first week home in the UK nursing a breakout. I was totally fed up and starting to panic as we decided to go travelling in SE Asia/Indonesia for 2 months for our honeymoon. How could I spend 2 months, and our honeymoon, like this… I realized I had to get to the bottom of this feeling that I did not have Prickly Heat and find out myself what it was. After a week of trawling the internet, finally A BREAKTHROUGH! One paragraph from a UK TV medical show, after Googling Prickly Heat for the millionth time,

A similar condition is polymorphic light eruption (PLE), which is caused by exposure to sunlight. The condition can develop after as little as 20 minutes exposure to the sun, although the itchy spots are often delayed in their onset and may take 5 to 10 days to clear. Unlike prickly heat, it isn’t related to overheating, although prevention methods and treatment are generally the same.

I couldn’t believe what I was reading. My husband, my sister and I madly started Googling and everything became clear. I was so relieved! All the causes, symptoms, everything made sense. We needed a strategy and there is so little info on it. And then my husband came across your blog, which has been the first thing to give me hope! Amazing :)
and clearly amazing for so many other people too, not only the ones that have taken time to leave comments, I’m sure. So thanks to you!!

Putting a strategy together as we speak.

Genevieve

Genevieve Antony said...

Hi again,

My Strategy:
So we are leaving in just under 2 weeks (yay!). This is what I am going to do, from now and then through-out the 8 week trip:

• Beta-Carotene Capsules (How much do you take? Can anyone advise?)
• Heliocare Ultra D Capsules (1 a day before we leave and 2 a day while away)
• Loratadine 10mg tablets for allergies (like Claritin in US or Clarityn in UK, 1 a day)

Banana Boat UltraDefence Sun Protection Mist SPF 30 *WITH AVOTRIPLEX*
I just saw this yesterday at Boots, so UK now has it too, a few bottles hiding at the bottom of a shelf. Sadly no other SPFs under 30.
http://www.boots.com/en/Banana-Boat-Ultra-Defense-lotion-SPF30_1121015/
La Roche-Posay too expensive, but also saw Ambre Solaire by Garnier that has Mexoryl SX. Could be an option but going to stick with the Banana Boat for now.

• Piz Buin Allergy SPF 15 (for later in the trip, can’t find anything lower than 15 but will keep looking, and a chance to test out the Piz Buin)
• Vitamin E oil (Or has anyone tried BIO-OIL, which has Vit E + others and I hear is excellent?)
• Either Banana Boat Aloe Aftersun or Piz Buin Allergy Aftersun
• A BIG HAT, J-LO STYLE :D woo hoo!
• Doc has given me steroid cream to relieve a breakout (holding thumbs I won’t need it)

Also, I still want to spend more time researching the hormone connection. If anyone has any ideas or info on this, would love to hear it?

Good luck to everyone out there and hope you have blissful and rash-free summers :) I will let you know how it goes for me…

Genevieve

Anonymous said...

Hello,
http://www.boots.com/en/Banana-Boat-Ultra-Defense-lotion-SPF30_1121015
This is on bogof at the moment. Don't know if they ship to US though.
Steve

Anonymous said...

Just went shopping for sunscreen at Walmart. Got Hawaiian tropic and Banana Boat 15s

Anonymous said...

Genevieve, please let me know how that works for you, sounds exactly like my plan for my holidays this summer!!

looking forward to the 2012 updating to hear how youve been getting along :) x

Anonymous said...

I have suffered with PMLE since I was a kid... terrible rashes every spring and summer for as long as I can remember. Last summer, I was pregnant with my first child and no PMLE! I naively thought I was magically cured. Funny how that goes... it is back with a vengeance this summer. I wonder what it is about pregnancy that stops the rash?

Anonymous said...

I was just on the eucerin website and they have a product eucerin sun allergy gel in 25 and 50 spf and states it helps with pmld. I used there similar product years ago and it helped me immensly. I was so disappointed when i couldnt purchase it any more. Just need to find out if we can purchase this product in the usa.

Lindsey B. said...

Thank you for the continued support for our little family here! To the last poster, when I was preganant, I didn't get as bad of a rash, but I was also more covered up in the tummy area and probably didn't go to the pool/beach quite as much, so maybe that was it?! I have found a website where we cab order the Eucerin! I'm posting a new link soon! Thank you so much for reading and sharing!

Anonymous said...

Hi everyone! I wanted to say thank you so much for all the great information you've posted here!!! I'm a newly diagnosed pmle mom of four and in the middle of a bad flare up now. So I have a couple of questions and would be so grateful for your responses!! First, what do you do to calm down a flare up and how long does it take before the itching and rash subsides? Second, what brands do you recommend for the vitamin e oil, and the other supplements? Lastly, has anyone used cerave cream to help with the inflamed and dry skin after sun exposure/rash? Thank you for your help - I'm really having a hard time with this and afraid I'll never be able to play in the sun again with my four kids - ages 8, 4, 4 and 3. Any tips and support would be greatly appreciated!

Ryan G. said...

Thanks for all this great information. I'm a 32 year old male and I started noticing this "rash" in my mid 20's. I'm wondering, how do you know when it's PMLE and not another skin rash/condition caused by heat or other skin problems? My breakouts are most definitely 24-36 hours after being in the sun and I get them really bad on my upper chest, tops of my shoulders, upper back areas and sometimes my neck a little bit. I never get them on my arms or legs. They look like hundreds of tiny pimples. They come out like clockwork after being in the sun and go away on their own after about a week. Does this sound like PMLE?

Any feedback would be so appreciated. Thanks again!

Katelyn said...

I can't thank you enough for your 2 posts regarding PMLE. I have not been formally diagnosed with PMLE, but after my vacation last week and much research, I am certain this is what I have. I love the sun so much that I didn't let the bumps (or itching) stop me from basking in the sun all week long. I am now paying the price :( The bumps are almost gone, but the itching continues.

I was dreading my next vacation at the beach, just 2 weeks away, until I found your blog. I almost cried when I found out that there was hope for me to still have a future in the in sun.

I have read every comment on both blog posts (twice!) and have made many notes on what to try. I went out yesterday and purchased what I could locally and ordered the rest. I hope the rest comes soon enough to make a different in my next vacation. I will comment again and let you know how my next vacation goes.

I also wanted to let everyone know that Australian Gold makes a spray gel sunscreen with broad spectrum coverage in SPF 30, 15, 8, and 4. I purchased the 15 and it has 2% avobenzone and only 0.5% oxybenzone (which another commenter said her dermotologist said is one ingredient we should avoid). I'm not sure of the percentages in the other SPF's because I tried to look it up on drugstore.com and it doesn't even show that the spf 15 had any avobenzone. Not sure if Austrailan Gold changed the formula and it hasn't been updated on drugstore.com or what, but i have the bottle right in front of me and it HAS 2% avobenzone!!

Also, will you post about what you do to help with the itching and how long it lasts for you - and encourage others to share their itch relief efforts and stories.

Thank you soooooo much for your time and effort researching and sharing what you find!!!

Anonymous said...

I just wanted to say that this blog has been such a huge help to me to read what others have tried and what worked and didn't work. It has been comforting to know that I'm not the only one who suffers from this condition. The dermatologists I have seen have offered no help since their only recommendations were to a) stay out of the sun and b) wear SPF protective clothing all the time! Not desirable options.

A few weeks ago, I read someone else's post and ordered La Roche Posay Anthelios w/ Mexoryl SPF 40 and I used it while at the park on a sunny day. I spent 2 hours out in the sun in shorts and a short sleeve t-shirt and no eruption! Amazing since before I wasn't able to be outside for 10 minutes without breaking out in a rash. It is a little thick but worth not having a rash. I also used La Roche Posay Anthelios Moisturizing Cream w/ Mexoryl SPF15 ... it feels lighter and I only had a slight outbreak on one arm (but other arm, hands and legs were totally clear!). I probably just needed to reapply.

I should also say that I've been taking a Vitamin D supplement daily since I have low Vitamin D. But I know the Vitamin D supplement on its own wasn't enough to prevent an outbreak.

I know this may not work for everyone but this is what worked for me and hopefully works for someone else too.

Thank you again for all the information and for all the other people who have commented on your blog. People who don't have PMLE don't understand ... but finding something that works is a life changer.

Jasmine said...

I've been researching PMLE for quite some time now, after a trip to Florida in April left me itching and broken out in hives across my face. I quickly thought back to when I was about 15 and I had broken out in the same small hives on my face, then I just figured it was the shellfish, sunscreen my mother kept soaking me in, or the heat. After I broke out again, without the sunscreen or the shellfish, I realized it had to be something else. I even looked into if the chemicals in the water were any different in Florida vs Northern states. Not once did I think of the sun. I'd been running around in the sun for as long as i could remember without any issues. I'm mixed, so I have darker skin, sun block was never something I really worried about (don't tell my doctor)All of this changed when about one month ago I visited Ocean City. After two days of enjoying myself with my boyfriend and friends, I was sent home with "Sun poisoning" My eyes and lips were swollen, my face was hot to the touch, it itches like crazy, and I had hives all over my shoulders, arms, and face. Once I began peeling and my skin was two different colors, I burst into tears. My boyfriend's mother told me she had heard of a rare disorder called PMLE from some colleagues at the FDA. The more I looked into it, the more the symptoms and frustrations matched up. But another friend of mine kept suggesting I get tested for Lupus since photo sensitivity is a symptom and PMLE just sounded like something someone made up. Sunday I went to an amusement park. Prepared with SPF 100, a hat , and sunglasses. Lo and Behold two hours after leaving the park, my face tingled, my eyes swelled, and once again I was left curled up in a ball icing my face. I called my mother in tears and then my OBGYN to ask if my birth control might have something to do with it. She said it was extremely possible the birth control was causing the photosensitivity and I immediately stopped taking it (I understand that's not an option for every woman with PMLE)
Today I was officially diagnosed with PMLE, prescribed Claritin, sent home with a giant bag of sunscreens and moisturizers and directed to basically just see what works and what doesn't.
I've seen a lot of people mentioning La Roche Posay because of the Avobenzone. I noticed that a moisturizer I use religiously Visibly Even by Neutregena, because of the uneven skin tone I'm left with after my rashes, contains 3% Avobenzone with and SPF of 15. Also their Sport Sunscreen SPF 100 contains it as well. I love Neutregena products because of my hypersensitive skin to begin with, but Apparently avobenzone doesn't work for me. There is the ingredient Mexoryl SX in La Roche, however, which may actually be what is working for some of us. My dermatologist has never heard of a sun pill but she said there was virtually no harm in trying it out. She also advised me to get half an hour of sun a day since in under a month I'll be shipped to FT Jackson South Carolina and staying out of the sun won't be an option.
So, I've ceased the contraceptive, ordered the sun pill, and began taking a claritin a day. I'm praying that this works, I've spent too much time indoors crying and frustrated with the idea of never being able to enjoy myself outdoors without looking and feeling awful.

I want to add that I'm so happy I found this blog, I don't feel so alone or ridiculous, it's always nice to know there are others who are going through the same thing, and have found ways to cope.

Anonymous said...

Hi there. Just wondering if you used any vitamins or other pills when you went to the beach everyday along with the blue lizard sunscreen? I recently made this purchase and so anxious to see how it works!

Anonymous said...

Did you find out about the birth control thing? Im taking the generic version of yaz and in wondering if that is a promienent effect to photo sensitivity?

Genevieve Antony said...

Hi Everyone
Quick update, so I have been in the sun for 5 weeks now NOT A HINT OF A BREAKOUT. We are so so happy :) thanks to everyone on this blog!
The steroid cream is untouched in its box, Vit E oil my new favourite thing :)
Will write more when we get back. Sending well wishes to you all from Bali,
Genevieve

Genevieve Antony said...

Ps: I went off the Pill just before my first breakout in 2008. Coincidence?
Not sure that makes sense in light of the Pill causing photosensitivity, but possibly a hormone change can have an effect. Seen quite a few people now saying that their PLME went away when they started having kids.
The plot thickens :)

Anonymous said...

I've got to say this blog has actually made my year, i'm 17 years old and ive had polymorphic light erruption since i was about 12. I live in england so obviously never get any sun. I break out without fail on my holidays abroad each year. I figured it was a genetic thing since my mum has had it once before when she was in her twenties. She hasnt had it since tho.. this year after seeing this blog I started UVB light treatment at the hospital twice a week. Basically a sun bed with a gradual build up each week. They cut out the UVA light tho, not sure why. I am going to tenerife next tuesday and for the past month(ish) i've been taking 1 vitamin tablet (niacin, vitamin A, B, C, D etc)and 1 heliocare tablet (betacerotene and plant exrtacts). I've also bought some la roche posay spf 20 online at amazon to see if that will help. Im praying that this year I will get no rash and actually have a holiday that I can enjoy. I will keep you updated on how everything turned out when i return in 2 weeks!!

Anonymous said...

I too believe I am suffering from PMLE, although I'm not sure if my symptoms are as severe as some of you. My breakouts usually occur on my legs, and slightly on my arms, but have been lucky not to have a reaction on my face. I can go in the sun for hours with no reaction, but if I spend too much time (still trying to figure the amount out) I will break out usually within a day or 2. My dermatologist last diagnosed it as dermatitis, but I know it's linked to the sun. I'm happy to find this blog, and would love for you all to continue posting what has worked and not worked as I'm just in the beginning stages of trying to understand PMLE, and what I can do to live the most normal life possible. Thank You!

Eloise said...

Hi Lindsey,
I have PMLE since the age of 12 and I am now 34.

According to many research conclusions, 80% of people who have used a formulation with alpha-glucosylrutin (also called AGR, ag-rutin, glucosylrutin) and Vitamin E have experienced a major improvement of their PMLE and most of them had no symptoms at all. But you know already know the problem... This lotion do not exist in America!

So a couple of months ago I decided to formulate this antioxidant body lotion myself (with the help of a cosmetic chemist, obviously)! At first my idea was to develop a small quantity for myself. I soon realized the cost involved in formulating and producing a cosmetic was tremendous and the minimum quantity way too much for me. This project took a whole new direction as I realized how many people were struggling with PMLE, and how much they could benefit from my project. Here is the conclusion of 6 months of hard work. The lotion is now available online in US and Canada by the brand Shirudo. http://www.shirudo.com.

All ingredients are natural, in part ECOCERT certified and are suitable for sensitive skin. It is an ultra-light lotion that quickly absorbs, making it easy to apply every 2 hours while on vacation and until hardening occurs. You must still apply sun protection on top of it, but the good news is that you can keep using your favorite.

I just came back from vacation and the results are amazing. The lotion saved me from another PMLE outbreak. From all the preventive treatments I’ve tried so far (and I tried A LOT!), it is the only solution that has reduced 90% of my symptoms and allowed me to fully enjoy my vacation. I spent 7 days on the beaches of Cape Cod, typically 5 to 6 hours of direct sun exposure everyday. The only minor rash that appeared was under my arms and on the back of my thighs where lotion may have been removed by my towel. You can read a complete review on my blog http://mysunallergy.com

An SPF 25 from Ombrelle was quite enough and I didn’t get any sunburn. One of the most surprising things I realized while testing the lotion is that my skin is not as sensitive as I thought. Since I was a teen, I used a very high SPF (even going as high as SPF 100!) thinking that my skin was burning easily when actually it was my PMLE either causing this burning sensation, or making my skin more prone to sunburn.

Next step is to spread the good news hoping it will work for other people suffering from polymorphous light eruption. The horrible truth about PMLE is the ‘polymorphous’ part, because everyone experiences it differently. On your next vacation please give this lotion a try and let me know how it goes! Eloise

kidsrn70 said...

I am so happy I found this blog. I was diagnosed 12 years ago when I was 30. At first I did tons of research and didn't find much info. I did the light therapy for one winter (I live in pa) but it was so time consuming. I have used sunscreen with mexoryl which I think works wonderful, but it is so expensive to ship and the volume in the bottle is just not enough. So I have been getting by these last few years taking prednisone when I had a breakout and special steroid cream that was prescribed. I also have had two children since then, 5 and 3 years ago, and my symptoms were minimal to non existent while I was pregnant. Even the first couple years after my last baby was not so bad. I was so excited because I thought it was not coming back. Until this year :( I just broke out in my second big rash this summer. I love the info you have provided. I just went out and got my niacin, claritn, beta carotene and I ordered the helioplex pills on amazon. I use "No Ad" sunscreen with SPF of 85. It has the avobenzone in it. It seems to work ok but not great. I am considering trying the same brand but with zinc or titanium oxide in it. I have olive colored skin so I don't need to try to get a tan. Another thing I thought of, while I was pregnant I took my prenatals with fish oil, vit d 2000 iu, and 1000 vit c. I took it for about four years total and I have since stopped all that last year when I stopped nursing. This is also the time when my symptoms were the least. I think I should go back to the same regimine again to see if it helps. Thanks again for all these wonderful tips. It so nice to know I'm not alone. I have bookmarked your blog.
Sharon

Fiona Mecrow said...

Hi,

I have just returned from a week in Greece in 40C (104F) heat and for the first time in 6 years I DIDN’T GET THE RASH!! I even got a tan!

I am a 24-year-old female from the UK. I have had what I believe to be PMLE for the last 6 years, since I was 18. I get the rash across my chest, down my arms and forearms and the tops of my legs.

Like a lot of people, most tell me I have prickly heat, however since I can get the rash in an air-conditioned car through the window I knew it wasn’t prickly heat and started to search for other options. I came across various forums regarding PMLE, however this was by far the most helpful. Of course both my Doctor and pharmacist had not heard of PMLE so I decided to go ahead and follow advice from here, particularly from Genevieve Antony.

For two weeks before I left and whilst I was away, each evening before I went to sleep, I took:

Fexofenadine (180 mg – prescribed by my Doctor)
Beta Carotene (6 mg)
Lycopene (10 mg)
Heliocare Ultra-D
Niacin (100mg)

The only side effect I had from these pills was from the Niacin. I wasn’t sure what was happening at first but then remember somebody on here mentioning the flushing. I experienced this after about 4 days of taking 1 100mg tablet a day, from then I took only half a tablet (50mg) and didn’t experience it again.

Whilst I was away I used two different suntan lotions:

Banana Boat Ultra Defence SPF 30
Piz Buin Allergy Spray SPF 15

And also Piz Buin Allergy Aftersun

Both suntan lotions worked well, however the Banana Boat lotion ran out after two days of using it and I had only applied it twice each day. I still received no rash with piz buin lotion and I found smelt and felt nicer.

If I had to pick something that worked it would probably be the Fexofenadine and the Heliocare, however I plan to jut take the whole lot when I next go away. It’s worth it to not spend the majority of the week in a hotel room!

One thing to add, I don’t think the suntan lotion made much difference to my lack of rash, as on my last day I didn’t reapply the lotion after getting in and out of the pool several times. My chest and shoulders (where I get the rash the worst) got pretty burnt, but no rash, so I reckon it’s the tablets making the biggest difference.

Thanks so much to Lindsey and everyone who has given their advice and suggestions. You have finally let me spend my holiday in the sun!

Anonymous said...

Thank you for being here! Have been going crazy for 7 yrs with symptoms and no help from docs! Will try everything and report back. In the meantime, my symptoms began around the time my thyroid decided to take a vacation, and Mr. Hashimoto moved in.....ie autoimmune involvement! The puzzle will be fully solved when I can shut down Mr. H. To anyone out there suffering sun allergy.......do check your thyroid function and consult the protocols for iodine supplementation if in any doubt things aren't quite right. It seems all a game of dominos sadly! Helen

Anonymous said...

Thank you for being here! Have been going crazy for 7 yrs with symptoms and no help from docs! Will try everything and report back. In the meantime, my symptoms began around the time my thyroid decided to take a vacation, and Mr. Hashimoto moved in.....ie autoimmune involvement! The puzzle will be fully solved when I can shut down Mr. H. To anyone out there suffering sun allergy.......do check your thyroid function and consult the protocols for iodine supplementation if in any doubt things aren't quite right. It seems all a game of dominos sadly! Helen

Erin in WA said...

I have suffered from PMLE since I first got it when I was 10 yrs old on vacation in Mexico. I have gotten it ever since, usually on day 3 or 4 of vacation in sunny locations: Mexico, Hawaii, Arizona, etc. It sucks!!! My dermatologist had me on Malaria drugs as treatment for 3 months prior to my honeymoon and it didn't work! I was very excited to find this blog, because as other people mentioned staying out of the sun was really the only thing that medical sites or doctors recommend.

I went away for a 3-day trip in 95 degree weather and got the beginning of hives on the last day. I found the blog and did the following things in anticipation of going away the next weekend for the same thing.

- sunscreen with avobenzone - 8SPF (only 0.5% and 15spf with 3%)
- beta carotene
- niacin (non-flush kind)
- claratin
- vitamin E

I did not get hives on my second trip which was only 6 days after my last hive outburst!!!! I have the darkest tan!! It is so nice to not have hive + actually get a golden tan. I found daily body lotion with 3% avobenzone (Aveno) and now use that daily in the hopes that it helps. I will let you know if it works on longer trips now that I have the confidence to book one without the fear of hives. This is life changing for me. THANK YOU!!!

Anonymous said...

Hi

I am so thankful for your blog. This year was the second time my legs came out in the terrible rash as soon as I went into the sun whilst on holiday. When it happened for the first time last year I just put it down to stress factors and turning 40. However when it happened again this year I started to really worry. One night when I could not sleep because I was really concerned about the terrible redness all over my legs I went online to see if I could find some answers and I found your blog. As soon as I read the comments I knew this was what I had. So I made a list of the vitamins and supplements which had the most success and the names of all the sun creams and the next morning I went to the pharmacy.
I was in Italy at the time so I knew I might not be able to find the same products.
My list of supplements included beta carotene,vitamins E, D and B, fish oil and magnesium. So I asked the pharmacist for supplements which would cover all or at least most of the vitamins. The best he could give me was "Solecap" which is made to be taken a week before sun exposure. It also had other supplements in it which I thought would not hurt. Then I looked for the sun reams. I could not believe my luck when I found the whole range of La Roche-Posay and the Anthelios creams within the range. I bought the whole lot!
When I got back home I took a "Solecap" tablet that afternoon and another the next morning. Then I put on the sunscreen and ventured out to the sun lounger and waited..... And nothing happened. no rash, nothing at all... It was amazing.
I had to write and tell you all about it so that hopefully someone else can reap the benefits of my story, as I did through everyone's story on this blog. I am so relieved that I can keep this under control. I live in New Zealand, so I brought the sun supplements back here with all the creams and as soon as summer turns up in December I will be taking the "Suncap" tablets a week before I start sun bathing.
thank you Lindsay for your blog and thank you to you all for your stories and your advice....

Anonymous said...

Ok So I came across this forum a few months ago while trying to find some solution to my PMLE breakouts and although I never post on forums I felt a responsibility to let you all know what worked for me.

To give you a brief background, I am male (which seems to be the minority) 30 years old and medium skin tone and live in the UK. I first had an outbreak when I was around 12 years old and typically was told it was prickly heat and to just stay out of the sun! I then went in to remission from it for whatever reason but then it returned when I was 19 – 20 and have had it at varying degrees ever since. Initially I only had got it on my chest, then I began to get it on my back and eventually I began to get it on arms, hands, legs and even on my face.

Having read the forum I had decided before I went on my honeymoon to Mexico that I would take all precautions and purchased Beta Carotene, Niacin (100mg), claratin, banana boat SPF 30 with avobenzone and banana boat after sun gel. I began taking the supplements 2 weeks before travelling and came out in a huge rash, turn out it was the flushing from the niacin (probably due to the high dosage). So I decided to stop using it.

Once we arrived in Mexico I thought I had forgotten the Beta Carotene and therefore stopped using it. I lay in the sun for a day and a half and the break out returned :( so for the next 2 days I stayed out of the sun and then low and behold I found the Carotene in one of my shoes, so I began to take it. I limited my time in the sun for the next day or so and eventually I would go in the sun as much as I wanted without any breakout!!! Was it the Beta Carotene? Was it that my skin had adapted to the sun? In my opinion it was probably a combination of both. I don’t think the sun screen made any difference as I eventually used my wife’s sultan spf 15 from boots and I didn’t get a break out. Again this may be due to the fact by now my skin was getting use to the sun rays.

I’m guessing that what works for one person may not necessarily work for another but this forum sure gives people options. I think it is a matter of trial and error and can be a painful process but persevere and you will find what works for you. Next time I think I will take the Beta Carotene, claratin and maybe try the non flushing niacin (low dosage). Also I think it’s most important to slowly expose yourself to the sun (avoiding mid day sun for the first few day). Some people suggest tanning beds before going in the sun and I’m sure this may help but will prove quit costly.

I would be intrigued to continue to see what works for others and its great that people are finding what works for them as I’m sure like me you refuse to believe there is no prevention than just staying out of the sun.

Thanks to all who posted their recommendations!!!

Robyn Gates said...

Thanks for your intense research and dedication to helping others who suffer from PMLE! I am 36 and was diagnosed at the age of 9. When I was diagnosed I had the most severe case of PMLE that my dermatologist had ever seen. I can't tell you how many times I was sent home from school for fear of me having chicken pox or impetigo. My breakouts were EVERYWHERE....my face, neck, arms, legs, chest, hands and feet.I have found that as I get older my breakouts have become concentrated to the tops and sides of my hands. The inflammation and itching is indescribable, not to mention the achy stiffness of the joints in my hands & wrists. I have tried every prescription or over the counter DRUG that could possibly prevent or treat my breakouts. Hydroxyzine, Plaquenil, topical numbing creams, claritin, zyrtek, benadryl, cortizone creams and many others.
About three years ago I discovered Heliocare while doing my own research on PMLE and decided to give it a try. The results were incredible to say the least considering the severity of my breakouts. I did have a mild breakout while taking the Heliocare and using SPF 75 prescription sunscreen but it was so mild I barely even noticed. I continued to take the Heliocare through the Summer and into early Fall. I can honestly say that it DOES make a HUGE difference.
My dermatologist has recommended that I stay out of the sun but as a mother of two very active little boys, that is not an option!! Besides, who wants to stay indoors when it's beautiful outside? Not this Momma!! I WANT TO HAVE FUN!
I plan to order the Shirudo Antioxidant Moisturizing Body Lotion & the La Roche Posay Anthelios Mexoryl SX sun block to add to my regiment.
The only reason I will continue to see my dermatologist is due to the fact that PMLE is considered a cousin to Lupus and I have already tested positive for my ANA blood tests.

salmons01 said...

Again, great info! I'm perusing your posts looking for a good sunscreen.

I posted in Feb after coming back from vacation with the worst PMLE rash ever. I ordered the Heliocare from drugstore.com and started taking them in May a couple weeks before getting out in the summer sun. Guess what??? NO RASH! I've had that first sun of the season rash for the last few years and this time - no rash.

It could be a combo of the heliocare and the fact that I got quite a bit of sun in February. I'm definitely getting more heliocare and looking for the right sunscreen so I'm prepared for Mexico next Feb!!

Thanks again for all the valuable info!

Anonymous said...

Hi my name is Domenica I've been a pmle sufferer for about 8 yrs now I'm 33 now I was so upset and depressed about having this condition my honeymoon was ruined in Mexico in 2008 rash all over even my legs and face which they say your never supposed to really get a reaction on your face but I did:( I thought omg I'm never gonna be able to go away on a Caribbean vaca ever again I did a lot of my own research and I now can finally go out into the sun I take a lot of vitamins ,antioxidants, any heliocare it as been so good me. I start by asking heliocare 1month before summer hits all through the summer even on days I'm not gonna be in the sun lik a regular vitamin Daily and I use sunscreen with antioxidants too! From this website I've learned of new things to try which I am using now ill use everything o rent this rash from coming out!!! Seems though I still can't laden a whole week in the sun for 5 hours a day which I out love to be able to do bc I will end up itch the rash a little but I must say all I these things really o help eliminate a lot of it thinks for a great web page it's surprising to here ho many people have to live with this it's a sad thing good luck everyone! Xoxo

Anonymous said...

I found this site researching and so glad I did.

Hoping someone will have a suggestion:: My problem area is the backs of my hands and my arm below my elbows. I am a home health nurse and took me a while but I eliminated the problem down to being from the sun. I drive from house to house and on sunny days the PMLE drives me CRAZY.

I can apply sunscreen but I have to wash my hands so much what would you suggest???

Anonymous said...

I am 26 years old. I broke out in my first PMLE rash when I was 9. I had about 10 horrible summers until a doctor suggested the Heliocare pills. It is pretty hard to find them in the US but every time I have a friend in Europe I have them buy me a few bottles. They have made my rash 80% better when I do brake out. I take them every morning before I go out into the sun. I also take zertec in the morning and nights when I'm on a vacation in the sun. I also use Clobetasol Propianate 0.05%. The rash that I do get, I put this on and it will make it go away another 10% overnight. This combo has really gotten my PMLE under control. I am going to try the Shirudo AGR+E cream this summer to see if I can really knock my rash out.

Anonymous said...

I'm in my first year of PMLE. Finally got diagnosed after my 3rd doctor (2nd dermatologist). They suggested I take plaquenil in the summers. Has anyone done this? I know there are some possible side affects... Would love to hear from anyone who's tried it.