tag:blogger.com,1999:blog-560270016852436220.post438780316577855722..comments2023-09-21T04:31:36.422-04:00Comments on Mommy 2 Connor: PMLE Update - Just in Time for Summer!Lindsey Brodskyhttp://www.blogger.com/profile/06319802403228845874noreply@blogger.comBlogger61125tag:blogger.com,1999:blog-560270016852436220.post-923282940041856912017-06-29T21:15:27.900-04:002017-06-29T21:15:27.900-04:00I have had pmle for seven long years.... it totall...I have had pmle for seven long years.... it totally stinks, I always loved laying out and with my olive complexion I always got a nice dark tan. We vacation numerous times per year abroad and it made my vacations miserable! This year though.... :) I started taking heliocare at first and still got a rash but not nearly as itchy or red. Then I saw this banana boat avobenzone post and began using it with my heliocare, it's a miracle in my opinion! Still a slight itch but I've actually got a tan!!! And I'm not up itching all night. It's no cure but both in combination have decreased my rash immensely.Anonymoushttps://www.blogger.com/profile/03818817054028291057noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-74403145663876708742017-04-10T12:57:43.252-04:002017-04-10T12:57:43.252-04:00I live in the Midwest, and in three days I leave f...I live in the Midwest, and in three days I leave for California. I love laying out and getting a nice tan, but my PMLE makes it very hard to enjoy myself. I have done plenty of research.. a tanning bed is not an option. I have purchased Shirudo. Can I use a tanning lotion with SPF 4 on top of that for the sunscreen? If anyone has any quality tips, I would love to hear.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-33329512241207436452016-12-15T15:58:06.374-05:002016-12-15T15:58:06.374-05:00I'm in my first year of PMLE. Finally got diag...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-26977155531998929782015-06-03T17:24:31.326-04:002015-06-03T17:24:31.326-04:00I am 26 years old. I broke out in my first PMLE r...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-56797184276405535552014-05-25T21:47:08.326-04:002014-05-25T21:47:08.326-04:00I found this site researching and so glad I did.
...I found this site researching and so glad I did. <br /><br />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. <br /><br />I can apply sunscreen but I have to wash my hands so much what would you suggest??? Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-43366178809310325482013-08-25T15:47:12.454-04:002013-08-25T15:47:12.454-04:00Hi my name is Domenica I've been a pmle suffer...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! XoxoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-67365772507853069912013-07-01T10:52:12.431-04:002013-07-01T10:52:12.431-04:00Again, great info! I'm perusing your posts lo...Again, great info! I'm perusing your posts looking for a good sunscreen. <br /><br />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.<br /><br />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!!<br /><br />Thanks again for all the valuable info!salmons01https://www.blogger.com/profile/18264582644099166061noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-80441018323023239412013-04-22T00:53:02.174-04:002013-04-22T00:53:02.174-04:00Thanks for your intense research and dedication to...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. <br />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.<br />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! <br />I plan to order the Shirudo Antioxidant Moisturizing Body Lotion & the La Roche Posay Anthelios Mexoryl SX sun block to add to my regiment. <br />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. <br /> <br /> Robyn Gatesnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-27509075446559964372012-09-20T11:26:27.578-04:002012-09-20T11:26:27.578-04:00Ok So I came across this forum a few months ago wh...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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Thanks to all who posted their recommendations!!!<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-19325531536061818662012-09-02T07:27:43.537-04:002012-09-02T07:27:43.537-04:00Hi
I am so thankful for your blog. This year was ...Hi<br /><br />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.<br />I was in Italy at the time so I knew I might not be able to find the same products.<br />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!<br />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. <br />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.<br />thank you Lindsay for your blog and thank you to you all for your stories and your advice....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-53507997491712334342012-08-23T15:26:13.057-04:002012-08-23T15:26:13.057-04:00I have suffered from PMLE since I first got it whe...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.<br /><br />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.<br /><br />- sunscreen with avobenzone - 8SPF (only 0.5% and 15spf with 3%)<br />- beta carotene<br />- niacin (non-flush kind)<br />- claratin<br />- vitamin E<br /><br />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!!!Erin in WAnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-43245114580906743892012-08-04T18:14:05.035-04:002012-08-04T18:14:05.035-04:00Thank you for being here! Have been going crazy f...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! HelenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-75906097576432836282012-08-04T18:10:35.394-04:002012-08-04T18:10:35.394-04:00Thank you for being here! Have been going crazy f...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! HelenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-75298759726034338682012-08-03T14:48:16.700-04:002012-08-03T14:48:16.700-04:00Hi,
I have just returned from a week in Greece i...Hi, <br /><br />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!<br /><br />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.<br /><br />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.<br /><br />For two weeks before I left and whilst I was away, each evening before I went to sleep, I took:<br /><br />Fexofenadine (180 mg – prescribed by my Doctor)<br />Beta Carotene (6 mg)<br />Lycopene (10 mg)<br />Heliocare Ultra-D<br />Niacin (100mg)<br /><br />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. <br /><br />Whilst I was away I used two different suntan lotions:<br /><br />Banana Boat Ultra Defence SPF 30<br />Piz Buin Allergy Spray SPF 15<br /><br />And also Piz Buin Allergy Aftersun<br /><br />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. <br /><br />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!<br /><br />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. <br /><br />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!Fiona Mecrownoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-61263773575548867622012-08-01T00:34:03.842-04:002012-08-01T00:34:03.842-04:00I am so happy I found this blog. I was diagnosed 1...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.<br />Sharonkidsrn70https://www.blogger.com/profile/14299831641784169288noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-68772105482549744422012-07-17T11:55:37.043-04:002012-07-17T11:55:37.043-04:00Hi Lindsey,
I have PMLE since the age of 12 and I ...Hi Lindsey,<br />I have PMLE since the age of 12 and I am now 34. <br /><br />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!<br /><br />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. <br /><br />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. <br /><br />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<br /><br />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.<br /><br />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! EloiseEloisehttp://mysunallergy.comnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-82287053938549569732012-07-11T21:08:26.576-04:002012-07-11T21:08:26.576-04:00I too believe I am suffering from PMLE, although I...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!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-60302144629681168802012-07-04T06:11:16.062-04:002012-07-04T06:11:16.062-04:00I've got to say this blog has actually made my...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!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-81425875820122012992012-07-03T22:18:16.669-04:002012-07-03T22:18:16.669-04:00Ps: I went off the Pill just before my first break...Ps: I went off the Pill just before my first breakout in 2008. Coincidence? <br />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. <br />The plot thickens :)Genevieve Antonyhttps://www.blogger.com/profile/11198983422730289037noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-72362963806012530762012-07-03T22:06:24.033-04:002012-07-03T22:06:24.033-04:00Hi Everyone
Quick update, so I have been in the su...Hi Everyone<br />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! <br />The steroid cream is untouched in its box, Vit E oil my new favourite thing :) <br />Will write more when we get back. Sending well wishes to you all from Bali,<br />GenevieveGenevieve Antonyhttps://www.blogger.com/profile/11198983422730289037noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-47360887987458536682012-07-03T11:57:39.412-04:002012-07-03T11:57:39.412-04:00Did you find out about the birth control thing? Im...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?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-51789269382416634812012-07-03T11:47:49.917-04:002012-07-03T11:47:49.917-04:00Hi there. Just wondering if you used any vitamins ...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!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-47655067025210271512012-07-03T11:41:24.018-04:002012-07-03T11:41:24.018-04:00I've been researching PMLE for quite some time...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) <br />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.<br />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. <br />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. <br /><br />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.Jasminenoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-75175950710555138852012-06-28T14:11:50.256-04:002012-06-28T14:11:50.256-04:00I just wanted to say that this blog has been such ...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.<br /><br />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. <br /><br />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.<br /><br />I know this may not work for everyone but this is what worked for me and hopefully works for someone else too.<br /><br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-59067654790217719302012-06-20T16:36:40.247-04:002012-06-20T16:36:40.247-04:00I can't thank you enough for your 2 posts rega...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. <br /><br />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. <br /><br />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.<br /><br />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!!<br /><br />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.<br /><br />Thank you soooooo much for your time and effort researching and sharing what you find!!!Katelynhttps://www.blogger.com/profile/07788083912581288832noreply@blogger.com