First off, thank you to the 1000's of people from all over the WORLD who have stopped by in the last few years and left amazingly helpful comments for other PMLE sufferers! I LOVE that we are all so supportive and helpful to each other! So, thank you again for all the helpful comments and dialogue from all our readers!
My next goal is to separate my PMLE posts from my 'mommy', fashion, and other posts so I can continue to operate both - more on that when I figure out what exactly I'm going to do!
Many comments have asked for specific dosages and other details regarding the treatment options I've discussed in previous posts. For myself, I use (and will discuss in further detail) the following items:
**NEW PRODUCT!! SHIRUDO ANTIOXIDANT LOTION! (click to see post/review)
* Heliocare/ Solaricare Pills
* Claritin/allergy meds
* Beta Carotene (and any anti-oxidants both topical and orally in general) / lycopene
* Vitamin E oil (topical) / Bio-Oil
* Parasol (avobenzone) - found in sunscreens... Banana Boat specifically
** Alphaglucosylrutin (AGR) ** if anyone knows of ANY product containing this, or anything about this elusive ingredient, PLEASE let us know! It was in the Eucerin Daily Sun Defense Lotion, which is no longer available in the US and nearly impossible to find internationally!) I did find a website to order it through .... see below
**Wide-Brimmed Sun Hat / Covering up!
For reference, I spent the entire month of June in south Florida. Clearly, this was a great way to challenge the above mentioned items. After I discuss them, I will review my results!
I finally caved and purchased my Heliocare pills ('sun pill') on Amazon a few weeks ago. As per the label (and other readers' experiences) I started taking one per day about a month before my vacation to the beach, and bumped it up to two-per-day the week before and during the entire time we are at the beach. This ended up costing me about $100... was it worth it?! I'm not going to say either way. The ingredients in the pill are generally positive, so I don't think there was a bad side for me. I should note that I replaced my typical beta-carotene pill and my lycopene pill with the Heliocare pill.
I ALWAYS take a Zyrtec at night before bed because I suffer year-around indoor and outdoor allergies. I buy a bottle of 300+ from Costco in their own off-brand for about $15 ... well worth it on so many levels for myself. I would also imagine Benedryl would be helpful for any itching or swelling that occurs.
Beta Carotene / Lycopene / Anti-oxidant pills are bascially in the same scope as the Heliocare pills. However, I have more experience with taking the beta carotene (BC) and lycopene pills from the previous few years. I always take the highest concentration I can find in the morning before hitting the beach. This year, as I mentioned, I did NOT take these pills in conjunction with the sun pill.
***BIG NEWS HERE*** I found a place to order Eucerin Sun Defense lotion WITH the AGR that is proven to lessen and even prevent our symptoms!!! The insert with the lotion even discusses and illustrates HOW this lotion prevents the rash by blocking free radicals .... so cool!
www.paulsmarteurope.com has the Eucerin in SPF 25. It ships from Germany and must go through customs, so it took about a week and a half to receive. I was totally fine with that! The product was fresh, unopened, and just as described! For around $36 including shipping, I could NOT be happier! Weeee!
***MORE BIG NEWS HERE + 1*** I STILL broke out in my rash after three weeks in Florida. The funny thing is, it was on a cloudy day when I got lazy! It was the one day I didn't put any sunscreen at all on my stomach as I had started the day in a tee shirt, but then undressed down to just the bikini. I used a lot of the Eucerin to sooth and help prevent more rash from appearing and it worked quite well!
So, in conclusion, I still think that, besides building a tolerance to the sun each spring (which I've tried to do in both my backyard and a tanning bed) or simply covering yourself from the sun totally, the best prevention is topical - AGR and Avobenzone specifically! Not that the pills and other things don't work, but my personal experience is that if I can keep either one of those two substances on my skin while being exposed to the sun AND avoid becoming sun BURNED, I do not develop the rash.
The stronger the sun, earlier in the summer, and the more days in a row I am exposed to sun, the more likely I am to have an outbreak. AKA.... A Spring Break vacation to southern Florida almost always results in a rash faster than a weekend trip to Lake Michigan in August no matter what precautions I take!
Some have asked about birth control pills and I plan on looking more into this topic and the relation to PMLE. I know that my symptoms began about the time I went on the pill and have continued since. I also DID still have an outbreak when pregnant, but again, there are a lot of the same hormones floating around during pregnancy.... I may be willing to try going off the pill next summer to see if there is any positive effect. That seems like such an easy fix - maybe the pill only worsens the condition? It certainly is not the only culprit as there are men and children who also suffer .... but maybe there is a specific ingredient that aggravates the condition? I will look more into this.
Lastly, I have seen studies that suggest as we age the PMLE symptoms ease ... let's hope!
THANK YOU for stopping by and I look forward to hearing from those of you who are experimenting with these solutions this summer!
23 comments:
I just found your blog... thanks for posting about PMLE!! It is such a lonley thing, so I appreciate you sharing. I am glad yours has gotten much better:) I began suffering from PMLE about 3 years ago at age 23. I tried EVERYTHING and spent so much money on Dr. visits, medicines, etc. Two doctors basically told me there was nothing else I could try. I dreaded summers, and so missed out on pool time with friends, vacations, etc. I decided to go for a third opinion and the dermatologist I met with told me to try Allegra. After about one month on daily 24 hour allegra, my PMLE is basically gone!! In the sun, I now get small rashes every so often, but they are not painful. I take allegra every day, even in the winter.
Hi Lindsey, I am so grateful I came across all your posts on PMLE! I finally diagnosed myself this summer (too late) after a weekend in Ibiza. Although it feels good to figure out what's wrong, most websites are not very helpful on prevention and treatment.
I am currently in St Lucia on holiday so I think unfortunately it's too late for me to prepare my skin. But I wanted to just mention that I found the Eucerin Sun LEB protection SPF25 is also sold on amazon.co.uk. I don't know if the shipping for you is the same as getting it via Germany, but I live in London now so order frequently from amazon.co.uk anyway.
I was wondering if you also have any thoughts on best remedies once someone actually gets a PMLE break-out. Just for those of us where prevention is too late! I have been using a cortisone cream and taking the equivalent of Benadryl- but the cream doesn't seem to help the itch and the pills make me tired, which isn't helpful when looking after two small boys!
Thanks again for taking the time to post such detailed info on PMLE. It makes such a difference to those of us in misery!
Have you had your Vitamin D levels checked?
My husband and I saw this trial going on in Austria which is ongoing: http://clinicaltrials.gov/ct2/show/NCT01595893
so we decided to trial him on vitamin D by ourselves.
He's taking a much lower dose as 50,000 IUs is a very big dose.
He went out in the sun this weekend and has no rash.
It makes sense, the more rash you get, the less you go in the sun, the more vitamin D goes down. And so the cycle continues on and on.
If you google vitamin D you will see most of western population are deficient due to our time spent inside, whereas our ancestors lived outside much more and had no sunscreen!
Good luck with it
Sorry, I'm not sure I emphasised how important it is to get your Vitamin D levels checked for other reasons, aside from PLE:
1) Osteoporosis prevention - brittle bone disease - as you are not going in the sun, you won't be able to keep your bones strong as Vitamin D is vital to your bones' renewal and strength. Bones are not static, they have cells that are regenerating all the time. Without Vitamin D, your bones are going to become weaker and weaker until you experience a fracture. This can happen to anyone at anytime, not just old ladies. Gwyneth Paltrow had osteopenia due to spending too little time in the sun and had a fracture.
2) Cancer - high vitamin D levels are now proven to be preventative in many forms of cancer. So you really don't want to be low in vitamin D for too long.
3) Metabolic syndrome - if you suffer from diabetes, heart disease etc, doctors are now linking low Vitamin D to these conditions too.
If you are not going in the sun and you are using very high SPF cream, the chances are you not getting any UVB light on your skin, which is what makes Vitamin D in the body.
I urge you and anyone else reading this who suffers from PLE to go to your doctor and get your vitamin D levels tested. It's a very quick and inexpensive test to do.
The trial in Austria has shown that people with PLE have much lower vitamin D levels than the general population.
Supplementation is easy and cheap.
Please really do give it a go. It appears to be working for my husband who has suffered from this condition for 20 years.
Going off birth control pills had no effect on my PMLE. I would like to say though that I believe this condition can vary greatly by person (also, there are so many bc pills and they are all slightly different as well). So I'd appreciate if people acknowledge that just because something does or doesn't work for you doesn't mean it will be the same for everyone else with PMLE.
Hi I have has PMLE for six long years now. I am due to go to the Dominican in September and I'm looking for suncream to take. I was recommended piz buin allergy by a friend as they finally can go in the sun with no rash when useing it. I've done some research and it gets very bad reviews of people saying they had an allergy rashti the cream :-/ I don't need any help with getting a rash! But also there is some very good reviews from people with PMLE saying they can finally enjoy a holiday with no rash when using it! Has anyone here used the alertly piz buin range? How did it work for you? Can anyone recommend a good suncream for PMLE suffered that works as I would like to have a tan but without the rash. My rashes get worse each year and now cover every bit of skin when in the sun so could really use some good advice. Don't really wanna be taking pills and vitamins just want a suncream. Thanks
Sorry Anon, I accidentally deleted your post! Here it is below:
i have just returned home from 6 days in tenerife with temps of over 30 degrees... using Piz Buin Allergy range... to no effect. My rash is worse this time than it has been on previous occasions.
my friend tried a few sunbeds and taking Clorphenamine anti-histamine tabs that are particularly created for PLE sufferers for a month before she went away, and so far so good. the anti-histamine tabs are taken every 4-6 hours.
1st of all, I finally found some help from your posts in dealing with PMLE for about 20 years! Thank you! Through some research, you need to find a sunscreen with UVA and UVB coverage with Mexoryl in it. I live in Canada, and have found La Roche-Posay sunscreen to be effective for the past 2 summers in preventing the rash. I have had a couple of breakouts due to forgetting or applying the sunscreen to late. I'm off to Mexico this winter, and plan on doing pre-tanning (this helped tremendously with a trip to Greece a couple of years ago, no PMLE!) and adding betacarotene and Vitamin D supplements. I will be packing my sunscreen and long sleeves and searching for a beach umbrella.
Thanks again for helping us all!
I used the 'eucerin sun protection' factor 25 lotion, containing the magical ingredient you mentioned... And for the first time EVER didnt suffer from pmle!! I used it religiously for a week whilst in Greece, then the second week applied it once or twice a day. I also went to turkey where I used it for 2 days and spend the rest of the 2 week holiday only using factor 6 tanning oil. You can imagine how hot these countries are in the summer holidays so to not get any pmle is an absolute miracle!!! Thank you so much for bringing this miracle ingredient to my attention :) :) :)
I first started getting the rash when I was probably around 9 or 10 years old, so clearly I was not on any form of hirth control. I am now 22 qnd have been taking the pill for the last few years (on and off since I was probably 16 or so) I have had no difference in symptoms since I started the pill. Thats not to say that everyone else has had the same experience as me, but I just thought I would share my experience.
Has anyone had major medical problems earlier in life then started getting pmle? I had leukemia when I was 7 and it was shortly after I finished chemo that it started. I just wanted to know if anyone has had similar experiences because my mom and I think they might be related.
I'm glad I came across your blog! Just getting back from a week in Mexico and this is the worst rash on my chest, arms and legs I can remember. It's also the first time we've gone somewhere so hot and sunny in February where we did nothing much but sun bathe. I usually get the arm/chest rash after the first days in the sun in May or June but then I'm pretty good the rest of the season. Thanks for writing and sharing your research! I'm excited to try some things this summer. For now, I've just got to get rid of this itchy rash!!
I have been suffering from pmle for over 10 years now and I finally got diagnosed two summers ago after a week in Florida (I live in ny). I now go for UVB phototherapy each spring. We're traveling to Florida again at the end of march. I use the phototherapy for 12 or so visits before I go. It works! What happens is I stand in a booth at my dermatologists office, they expose me to UVB lights for minutes each week. They consistently up the time I'm exposed so that by the time I go my skin will have hardened. It works great! Zyrtec never worked for me, it only made me fall asleep. The only drawback to the treatments is that I have a small itch that bothers me a bit (nothing like an actual break out).so for a few weeks I have a mild itch (that seems to only really bother me at night while I'm trying to sleep when my body temperature is higher). I highly recommend the treatments!
Just discovered today that I have PMLE-- happened to have a derm appointment and caught it at the right time. Mine didn't start happening until about age 38. My derm swears by La Roche Posay "Anthelios" 60 SPF And to make sure it is one that has "cell-ox" shield. I was out in the sun a week ago with a hat and SPF 50 and still got it. She has the Anthelios has the proper UV protection (for people with PMLE) and an anti oxidant. It is sold at CVS, Ulta,etc.
I was diagnosed with pmle 20 years ago. After reading this blog i used heliocare, betacarotene and bananaboat sunscreen factor 30 and although i was obviously careful in the sun, i came home with a tan..(ive never had a tan!!!!)..and very little rash. My 12 year old daughter had very bad pmle last year for the first time after 1 weeks sunny weather in my native Scotland last year which made me research into pmle. Im so glad i did coz it helped her as well. Cant wait to go to sunny climates this year knowing (hopefully) we can enjoy the sun. So glad i came across this site.
I found Eucerin sun lotion at this store - cant wait for my holiday in Greece armed with all my new PMLE fighting equipment.
http://www.farmaline.co.uk/health/order/eucerin-allergy-protection-sun-cream-gel-uv-25-150-ml/
Thank you so much for this post - it is hugely helpful. For years I've felt like I'm allergic to the sun, and only last year after doctors telling me that I had eczema and other things did a dermatologist confirm PMLE. That said, I was an idiot yesterday and in spite of clouds I took off the thin gloves I've been wearing and now my hands are absolutely itchy. Any suggestions for things I can use now that I've already broken out?
This blog is heaven sent! I started experiencing PMLE symptoms a few months ago and was devastated! I have always been a sun-lover and just recently married a guy who loves the sun even more than I do. I was so embarrassed the first time I developed the rash and didn't know what was wrong with me. Since that experience I have been trying to figure out what the problem is and how I can prevent it... and then I found your blog! I haven't tried any of the suggestions yet, but I am going to start today. Thank you so much for being willing to share your experiences and remedies, I will let you know how it plays out for me.
This blog is heaven sent! I have always been a sun-lover and never had a problem until a few months ago. I was devastated when I figured out that the itchy rash I had on my chest was from the sun, and I now get it every time I'm in the sun and I have been so frusterated. Reading the blog has given me hope. I haven't tried any of the suggestions yet, but I will start today. Thank you so much for being willing to share your experiences and remedies for all of our benefit.
Have you researched any more on birth control being a cause that exacerbates PMLE? I started noticing my symptoms after starting BC pills and I just stopped taking them a few weeks ago because of other symptoms they were giving me, but I wanted to see if it would help my rash too, which I unfortunately get on my face. So far, it is not as bad as previous summers, but I feel I still notice some dermatitis. I can keep you posted when I expose myself to more sun rays.
Oh my word, this website is a GOLD MINE! My first rash was at 14 (so no relation to birth control) and I am now 46. So many many years of attempting to live with this, and I never got a diagnosis until age 40. Now I can go to Hawaii next month with my list of pills and creams and hope I don't get hives! I will have to hope I can buy some of the lotions mentioned here with AGR and Parasol on the island, as you can't fly with anything more than sample size, but I can take the pills.
I just started tanning last night, hoping that will work also. It has worked in the past, but I have never been to a sunny vacation this early in the year since my first attack of PMLE. But I feel I can rest easy now if I do get a rash from tanning. I will post again next week or so a report of how the tanning is going. The girl put me in a "Magic" high pressure UVA bed (4 minutes), not realizing that it is sun EXPOSURE, not sun BURN that triggers rash. But I just read that the Magic bed provides 8 HOURS of sunshine in a 12 minute session! ACK! I definitely have no pink, but it still is too early to know if I will break out. It usually takes me 48 to 72 hours to break out.
Anyway, I will post again next week in case anyone else is thinking of tanning beds.
THANK YOU Lindsey for providing this blog, I am sure that we all have felt like outsiders for a long time. I have never heard of anyone else in the 30 plus years having PMLE, and I was the first patient my doctor had ever seen with PMLE. And he is 50s! Thank you for doing all this homework, and letting us all know.
(Itchless in Seattle)
http://www.ijdvl.com/article.asp?issn=0378-6323;year=2010;volume=76;issue=6;spage=704;epage=705;aulast=Seetharam
Hi, I have had PLE since a working holiday in Australia some 23 years ago. It has made holidays a real trial. Topical steroids from local Doctors while on Holiday have been the only approach up to now. I have been amazed at the amount of comments on how people are coping. for the record , I have just taken delivery 13/05/13 of some Eucerin SPF 25 with AGR ordered on Amazon. It was supplied from a place in France.I am hoping that this along with some Beta Carotene will negate my having to visit a local doctor to help with my hives,rash,itching and blisters.Keep up the good work and thanks for the advice. Colin.UK.
Feel like crying with relief now I've found this blog.....I've been suffering from PMLE for at least 10 years. I'm now 29, getting married in October and am dreading coming out in a rash before my wedding, never mind our honeymoon (hoping to go to Hawaii next year!).
I was diagnosed around 5 years ago and told the same as you all - use a steroid cream to help when you get the rash but limit sun exposure as much as poss, wear a hat, blah blah. I've tried soooo many sun creams - think Boots own brand Soltan Sensitive has been the best I've tried but I've still ended up with the rash at some point. I have been using La Roche Posay Anthelios XL SPF 50+ Extreme Fluid on my face and neck the past couple of years and it def limits the rash but some will still creep through.
I have my rash all over my chest and torso at the moment and that is after a fairly cool, cloudy weekend in London of all places! - it is so bad that I have started on a three-day course of Prednisolone that my doctor prescribed as emergency treatment when my rash is bad. Taking the tablets works miracles but I want to be able to prevent the rash as sitting in my office covered up so no one can see the horrible rash is so confidence-destroying.
One thing I have noticed is the lack of rash on my face this year and I used to get it worst on my face. I am using a new moisturiser - Clinique Superdefense SPF25 Age Defense Moisturizer - and I wonder if it is this that is helping. The Clinique website says the following about the product: Skin's most complete defense against the visible signs of ageing in a daily moisturiser. Arms it to fight the effects of emotional stress, which can damage skin with effects much like sun and pollution. Provides broad spectrum protection against UVB/UVA rays. So I have decided to stay of the La Roche Posay for the moment to see if anything happens on my face.
I also thought that I might get the CLinique sun lotion if my face stays as good as it has been - this is the info provided by clinique on their SPF 40 lotion: Innovative SolarSmart technology stabilizes high-level protection against the aging and burning effects of UVA and UVB rays. Shields skin against environmental aggressors with an antioxidant boost. Gentle enough for sensitive skins. Dermatologist tested. Oil-free.
I'm wondering if it might be a miracle worker!!! However, now I've read about the Eucerin lotion I might have to try that too.
I tried Heliocare tablet a couple of years ago and didn't think much of them but I don't know if I was maybe taking too low a dose and not building them up in my system - might give them another go as they are available on Amazon.
Thank you again for this information - I found the Shirudo lotion on another blog yesterday but it looks like the website is sold out. I hope to get some shipped over as soon as it is back in stock because it sounds like it works miracles!
Good luck to everyone this summer - please keep posting your tips on how to manage this horrible condition.
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