tag:blogger.com,1999:blog-560270016852436220.comments2023-09-21T04:31:36.422-04:00Mommy 2 ConnorLindsey Brodskyhttp://www.blogger.com/profile/06319802403228845874noreply@blogger.comBlogger531125tag:blogger.com,1999:blog-560270016852436220.post-55623007020611608472018-05-24T09:56:55.255-04:002018-05-24T09:56:55.255-04:00This is the most helpful thread I have ever come a...This is the most helpful thread I have ever come across!<br />I too suffer from PMLE and for the longest time I have hated going on hot vacations with my family because of the painful and unsightly rash that I would constantly get within a day or two of being in the sun. Thank you so much for sharing all of your stories and what has worked for you, I cannot wait to try some of these tactics for myself! :) Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-33111653214614886662018-05-08T11:38:08.076-04:002018-05-08T11:38:08.076-04:00Thank you for your research. I have never suffered...Thank you for your research. I have never suffered from PMLE until about three years ago. I have dark hair and I’m dark (ish) skinned. Always tanned quickly. <br />Unfortunatly it saddens me when I read that there are no scars left, I suffer from psoriasis so every time my PMLE breaks out it stays for a week then turns in to Psoriasis. I still have Psoriasis from where I had PMLE August 2017. <br /><br />I will look forward to trying some of your suggestions. Again thank you for the researchTMWhttps://www.blogger.com/profile/13058716691772351512noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-1887659261725775622018-05-06T22:34:57.595-04:002018-05-06T22:34:57.595-04:00Hi, I’m 17 and have been suffering from plme since...Hi, I’m 17 and have been suffering from plme since I was 14. The best way to prevent a rash is to use ONLY sunscreens with zinc oxide AND titanium dioxide, in the highest percentages you can find, and to pair this with a morning antihistamine. Covering is always good, but not feasible at all times which is where this treatment comes in. I’ve been around the world using this method and it seems to help despite sun concentrations. Hope it works for you! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-80129106129992825932018-05-05T08:34:12.682-04:002018-05-05T08:34:12.682-04:00Hi All,
I have had symptoms since I was 20, I am ...Hi All,<br /><br />I have had symptoms since I was 20, I am now 52. <br /><br />UK: I get mild PMLE bumps and intermittent Solar Uticaria.<br />Abroad: I get PMLE severely if I am exposed to sun without shade. If I cover myself or stay under an umbrella etc I am fine.<br /><br />My issue is being a single parent with children its not always practical on a hot holiday to be covered or in the shade. If we want to do a boat trip or a day trip I have to check that I will be able to find shade. <br /><br />What does everyone else do? I was looking at a portable sun umbrella, and covers for my hands and feet. Any tips for being mobile in a hot country would help greatly<br /><br />I have tried La Roche Posay and Ultrasun sunscreen and now thinking of trying one of the zinc oxide types. Has anyone had any success. I found this website too.<br /><br />https://simplysunsafe.com/best-sunscreen-for-pmle/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-13965893421822591212018-04-12T23:32:38.224-04:002018-04-12T23:32:38.224-04:00I found the cure! I have been gettin this shit sin...I found the cure! I have been gettin this shit since I was 14 and I found out last summer when I jumped in a pool that it completely goes away in a few hrs. I get pmle really severe and it works every time. Not with some pools unfortunately. Must be some kind of clorene mix. But yeah im about to cure everybody here soonJ WALLACEhttps://www.blogger.com/profile/14285283258339163270noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-46649440176341180752017-10-25T10:48:26.973-04:002017-10-25T10:48:26.973-04:00Last summer the itch and burning on my arms was pr...Last summer the itch and burning on my arms was probably my first brush with PLE (PMLE). I had no idea what it was. I have been overexposed to the sun for most of my 68 years ... not too good for a fair haired (now white) and blue-eyed person. This summer the itch and burning was acute and almost intolerable. I thought it was a combination of exposure to poison oak, poison ivy, wild parsnip, thousands of mosquito and deer fly bites and maybe the sun. I work a lot in the bush and the garden, eh!<br />Two pharmacists suggested Hydrocortisone 1%, an over-the-counter remedy that worked somewhat but not impressively, for the price. Coconut Oil and Aloe Vera (a LOT cheaper) had an equally positive, though marginal effect. Heliocare pills had NO apparent effect.<br />About the middle of August, Dr Google and other resources such as this blog by mommy2connor.ca set me straight, thank you very much. It was and is, in my mind, PLE (PMLE).<br />I resorted to long-sleeves for the rest of the summer and it took the next 7 or 8 weeks before the itch and burning subsided to the point where I was not self medicating 4, then 3, then 2 times a day. During that time, even 2 minutes in the sun would revive the symptoms so I had to quit even that. I still itch a wee bit at the end of October but it's getting to the point at which I don't notice it most of the time.<br />I will keep an eye on this blog, thank you very much. It's in my Bookmarks and I will try some of the Rx's referred to herein. With continued information and advice from all of you, hopefully I will be able to preclude another eruption next summer. I don't expect to be in short sleeves until at least April (-40 degrees is a bad time for short sleeves).Anonymoushttps://www.blogger.com/profile/13573886693026575245noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-6411340098549697492017-10-24T11:16:25.198-04:002017-10-24T11:16:25.198-04:00I am just back from the first holiday in 25 years ...I am just back from the first holiday in 25 years without having had suffered PLE. When i was younger everyone said it was prickly heat but i recently discovered it is PLE i have. This year a new specialist put me through light therapy in the spring, prescribed prednisolone (steroids) to take throughout and after a lot of research i tried UltraSun sun cream (which was gorgeous to use for the whole family). I could cry I am so relieved that it didn't ruin another holiday - this was a last resort and i was about to give up holidaying in the sun.<br /><br />I really cannot believe it worked - whether it was a mixture of all or just one thing i don't know, but i will be doing it again that is for sure!!!Anonymoushttps://www.blogger.com/profile/04361211791582012041noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-17848838137504244042017-08-15T15:10:32.710-04:002017-08-15T15:10:32.710-04:00I haven't been in the sun now for three weeks,...I haven't been in the sun now for three weeks, and still have the blisters from PMLE. Doesn't anyone else's last this long? This is the longest it's ever lasted over the last 6 years of dealing with it. And what about Allegra? Why do docs suggest that?Anonymoushttps://www.blogger.com/profile/01193171253557486889noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-45521082763079136222017-08-15T15:08:57.212-04:002017-08-15T15:08:57.212-04:00I've been reading the comments and wondering a...I've been reading the comments and wondering about the Allegra? And why docs would recommend that? I've done the Shirundo and Helioplex and still have the outbreaks and mine are lasting really long this summer. I haven't been in the sun now for three weeks and they still aren't gone? Anyone else have it for this long?Anonymoushttps://www.blogger.com/profile/01193171253557486889noreply@blogger.comtag: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-35892432223571163372017-06-19T20:49:40.068-04:002017-06-19T20:49:40.068-04:00Pmle diagnosis for 3 years. Please give a thought ...Pmle diagnosis for 3 years. Please give a thought to pellagra as niacin resolved the issue, results in 2 days Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-83875888052982684532017-05-12T05:14:28.028-04:002017-05-12T05:14:28.028-04:00I was diagnosed several years ago with PMLE, and i...I was diagnosed several years ago with PMLE, and it seems to get worse with each year. I have found that I react to both UVA and UVB, through car windows, and even on overcast days. I have tried several sunscreens, but they only seem to cause me to break out faster and worse than before. I am quite heat intolerant, so staying out of sun and heat isn't about to break my heart, but it is inconvenient because I have to be out and about and cannot stand wearing long sleeves. I am also blind, so have to walk or stand outside waiting for public transportation whenever I want to go somewhere, which means longer periods of exposure. I have read many suggestions for easing the symptoms, and I am excited to try some of these. It is super frustrating because my outbreaks do not dwindle as the summer months progress. I react severely during winter, spring, summer, and fall. It is nice to hear that others are experimenting with different treatments, and that there are some products that help. It is also a comfort to know that this is not as uncommon as I previously thought. RoBrohttps://www.blogger.com/profile/05974663747210299816noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-48544845423455349222017-05-11T12:23:24.044-04:002017-05-11T12:23:24.044-04:00One thing that helps when I get PMLE on the back o...One thing that helps when I get PMLE on the back of my hands is keeping them away from soap and only washing the back of my hands with Noxema in my daily shower, along with using only lukewarm water to cool water(hot water really irritates it). Today I read that Noxema was originally a sunburn remedy, that might explain why it helps me.Anonymoushttps://www.blogger.com/profile/15346288286850357577noreply@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-59271895179359105182017-02-27T12:48:31.661-05:002017-02-27T12:48:31.661-05:00I suffer from PMLE as well, nothing has stopped it...I suffer from PMLE as well, nothing has stopped it except a steroid from my dermatologist. However, when I went to Greece last summer I felt it coming on, as I get really itchy before the bumps actually pop up, I started to notice it was going to happen, so I asked them for Benedrl. They do not have benadryl, so they gave me (Bllargen) which is not approved by the FDA in the US. This worked wonders, I took the pill, and immediately the itchiness went away and I did not suffer from PMLE that vacation. I am extremely pale, so this was like godsent. If you can get your hands on this, i recommend it. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-86046246560799743942017-01-24T23:29:02.979-05:002017-01-24T23:29:02.979-05:00After eight years of dealing with many different d...After eight years of dealing with many different doctors and misdiagnosis pmle is the latest answer. Do you have a recommendation for scalp irritation? I have discomfort and irritation just at the hairline on the back of my neck.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-10559332357089498192017-01-12T17:00:52.342-05:002017-01-12T17:00:52.342-05:00Hi there,
I am in South Africa and akso suffer PL...Hi there, <br />I am in South Africa and akso suffer PLE, is your product available through an agent in SAAnonymoushttps://www.blogger.com/profile/11104982644097461261noreply@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-32158202266425991362016-09-30T23:16:06.690-04:002016-09-30T23:16:06.690-04:00I'm so glad I found this website! Does anybod...I'm so glad I found this website! Does anybody know why alpha-glucosylrutin isn't available in products sold in the US? I will definitely be trying the Shirudo lotion!Kimnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-91355398103340742722016-08-08T09:39:32.449-04:002016-08-08T09:39:32.449-04:00Sigh. Sitting in Mexico under the shade, with an i...Sigh. Sitting in Mexico under the shade, with an itchy Ple rash yet again, another vacation made miserable by this condition, and I am a beach and sun lover. I'm so disappointed to see there's still not a cure. Are there any updates on potential "cures" or pills that change the melatonin in your skin. agh. Just read through 5 to 6 years of sufferers' comments and see no real treatment. Leila F. Searchhttps://www.blogger.com/profile/14886212694602427667noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-33166994309981874662016-07-17T21:15:44.806-04:002016-07-17T21:15:44.806-04:00Hi Guys,
I have been suffering from PMLE for many...Hi Guys,<br /><br />I have been suffering from PMLE for many years and have exhausted the NHS, I was lucky enough to go through the loop with a serious Dr, he sent me to a specialist in Aylesbury, and then through a course of desensitization therapy at Northampton Hospital. I really was not worth the effort. I still suffer. I went through desensitization for 5 years, going to the hospital every week for about 16 weeks at the end of winter, UV exposure for 1 second, then 2, etc up to about a minute. It would provoke a reaction that would subside and then it would be just as bad during summer. I gave up two years ago and have not noticed any difference. However, I am making sure each summer that I get the maximum exposure that I can. I gave up on using sunscreen and instead limited my exposure gradually building up. Well, this year, I do still have PMLE. But ... I no longer seem to get it on my head (my forehead use to look a bit like a minefield). I got it so bad that I would get big hives coming up. This would be on anywhere exposed to the sun for ten minutes. <br /><br />Now since the start of summer I have been out as much as I can. I get it pretty bad on my arm (it's pretty scabby at the moment) but each year it is getting less and less and takes more and more time to come up. Today we have been at the bedford festival and I have been out in the sun for about a total of three hours exposure, no sunscreen, I have just a few new lumps on my arm. However I am very light skinned my partner who is Italian calls me "Motzarella" this year my tan is darker than hers. It seems for me exposure is the key, but, in metered amounts, such as at the hospital, it did not improve much. The more exposure I get now the better it is and the less time the rash (hives in my case) last. They will flair up, but are normally gone the next day.<br /><br />I know this will make people cold, as I am obviously increasing my chances of skin cancer, but when I spoke to the Dr this year he was happy with the progress. I should state that I am not a masochist and do avoid getting myself burnt.<br /><br />Anyway, thank you for the helpful tips, thought I would just add this, as it can seem futile, but this is definitely the only thing that has improved it year on year.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-87205469008333448352016-06-09T15:17:09.254-04:002016-06-09T15:17:09.254-04:00I think the prevailing wisdom might have PMLE back...I think the prevailing wisdom might have PMLE backwards. Much like food or pollen allergies, the way to treat PMLE is through desensitization. Vitamin D is produced by UV in the skin, and PMLE is an allergic reaction to the vitamin D. Taking vitamin D as a supplement when you can't get a tolerable amount of sunlight should keep your body from overreacting, and you should try to start with small doses of sunlight with NO sunscreen on and increase your tolerance slowly. I would use vitamin d at 4000 iu daily if not getting any light on a day-to-day basis. <br /><br />I also found taking 1-2 pills of 1000mg vitamin C helped with the rash, since it is a histamine reaction and C is a powerful antioxidant. <br /><br />I hope this helps! lalalandhttps://www.blogger.com/profile/14545318680512052892noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-20691289192661672072016-05-11T05:04:03.268-04:002016-05-11T05:04:03.268-04:00I thought at first I had found the right page, but...I thought at first I had found the right page, but my condition is different.<br /><br />After not being in the sun for several months, when I go in the sun, in 10 minutes my back itches like crazy and I get these welts that look like giant mosquito bites.<br /><br />After a few minutes, the itching starts to reduce. Thirty minutes after exposure begean, the itching is gone and the swelling is going down, then the episode is over.<br /><br />I can stay in the sun or go back into the sun the next day and nothing happens. <br /><br />My theory is that there is a microorganism in my skin that is killed by the ultraviolet rays of the sun. When they die, it sets off an immune response, and my immune system is able to dissolve their dead bodies within 30 minutes, then the episode is over.<br /><br />Some are living too deep into the skin to be killed by the sun's rays. They multiply and some move closer to the surface. If I am not in the sun, they multiply until I go in the sun and they are killed off again.<br /><br />I've been too multiple specialists and they just say "sun allergy," which doesn't make sense because I can go in the sun after the episode without problem.<br /><br />If anyone has heard of something similar, I would like to know.Thoralorhttp://thoralor.comnoreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-89675759874757060452016-04-06T15:55:40.058-04:002016-04-06T15:55:40.058-04:00I have experienced temporary relieve from topical ...I have experienced temporary relieve from topical applications of birch essential oil on outbreak sites on my body. This is the fourth time in the past ten years I have had PMLE and I open to any treatments out there!Anonymoushttps://www.blogger.com/profile/11704990160801431261noreply@blogger.comtag:blogger.com,1999:blog-560270016852436220.post-15089800639640548352015-11-17T09:54:51.132-05:002015-11-17T09:54:51.132-05:00I really appreciate this site! I have had trouble ...I really appreciate this site! I have had trouble with what I now know is PMLE (my diagnosis) since I was about 30. For many years, I thought I was allergic to sunscreen and only used all natural products. I think I am sensitive to oxybenzone, but began to realize it was actually the sun giving me the rash. I eventually did a lot of reading and research and found Ocean Potion and realized I could use it, which was such a blessing because it was available at the time at Walmart and Walgreens. Of course, about a year later it seemed to disappear, so I now stock up on it from Amazon. That helped, because the natural products did not seem to be as effective at protecting me in the sun and dried my skin out. I live in Colorado, so the dry air and the intensity of the sun are big factors here. I began taking betacarotene most days and ordered heliocare last year and I think it does help as well. I am now 61 and still struggling with this post menopause (sorry!). However, my body overreacts to lots of things and I have fibromyalgia, so maybe that's a factor.<br /> I have found success this summer with taking 2 betacarotene and 2 heliocare on days I'll be in the sun. Claritin and the like make me feel more anxiety us than I usually am, but I have used it before and during a sunny trip to a hot springs this summer and had no problems. Fast forward to last week, with our trip to Akumal, Mx. I took heliocare and Claritin the week ahead and took them with me.<br />I am really mad at myself right now because in spite of taking them with me, I wasn't as consistent with taking Claritin and my heliocare. I am not really even sure if I took two beta each day, although I think I did. I took those in a pill carrier separate from my morning prescription meds and guess I was having too much fun and missed several days of taking the Claritin and heliocare. I was very focused on not getting stomach sick (which I usually do unless I'm super careful)and was religious about taking acidophulus and pepto tablets daily. I also realize now that I pushed the envelope more in terms of sun exposure because I didn't reapply sunscreen after snorkeling , although I positioned myself under a sun umbrella and covered up my lower legs and because that is often where it starts for me. This time, it is mainly on the back of my thighs and somewhat in between my upper thighs. Clearly where I got more sun during almost daily 1-2 hour snorkeling. <br /> I should just be really grateful, because I actually did not get my rash until the day after we got home last week. But I am so bummed to have it happen at all and feel like it's my own fault. But maybe that's better than being super vigilant and then having it happen anyway! <br /> That leads to another question I have. I am super hard on myself in general and have issues with anxiety, especially when it comes to things like this. Does anyone else feel that part of the rash and reaction itself causes a feeling of great anxiety and is that part of the allergic reaction or simply understandable. As you can probably tell, I don't like losing control in general and am usually so conscientious. So this really bothered me because knowing what can help and then not doing it is pretty silly of me. Trying hard to let it go but not very successfully! My husband says just focus on what you'll do differently next time and I have done that, even writing a note to myself to put in my vacation file. Next time, I'll lay out all the things I need to take and have them staring at me and in the same place as my thyroid meds, which I never miss. Sorry to rant but just venting to those who will hopefully understand does help. I also am low on Vitamin D right now. I don't know what why I am so good with prescription meds but bad about supplements!<br />Harriettnoreply@blogger.com