As many of you know, the ingredient alpha-glucosylrutin (AGR) has been shown in studies to prevent or lessen the symptoms of PMLE outbreak in many sufferers. Unfortunately, that ingredient was no longer offered in products in the US and was very difficult to find - and if you find it online, price and international shipping is a huge factor!
ALAS, I was contacted by the creator of this new lotion made by Shirudo...
This lotion contains even more of the 'magic' AGR ingredient than my beloved Eucerin Sun Defense Lotion!! As we know, this is such a hard thing to find! There are not a lot of choices out there for those of us suffering from PMLE.... typically the most recommended solution is staying out of the sun!! That is not an option for those of us who love the beach, enjoying an active outdoor lifestyle, playing with our kids at the park, going to the zoo, the pool, etc... Staying inside is not a practical solution!
I truly believe this lotion will finally be able to provide hope and help to PMLE sufferers who don't want to avoid the sun completely!
My First Experience:
I received this lotion in late July... just before leaving for a California beach vacation. It was the first thing I packed.... so excited to test out this lotion containing ARG and Vitamin E.... the ingredients I've raved so much about for the past few years! I discontinued all other 'prevention' methods I have discussed in previous posts (pills, other lotions, etc...), other than continuing to use SPF (Banana Boat dry oil spray) .
I used the lotion as recommended: Before sun exposure and then reapplying every 2 hours while in the sun. I also used it on my most PMLE-prone areas a few days before heading to the beach ... the idea there was to build it up in my system a bit.... not sure if it was necessary, but that's what I did.
I used SPF 4, 8, and 15 (so nothing above 15) while in the sun, over top of the Shirudo lotion. I did not develop ANY PMLE symptoms while on my vacation and came back with an amazing tan! I even experienced a slight sunburn on my chest are {oops!},which is typically the most prone to reaction, and there was no outbreak at all!
PROS:
Applies smoothly with no stickiness - feels like a regular body lotion
Scent-free and soothing to the skin
SPF-free... allowing you to use your own favorite brand and preferred SPF
About the same cost as any other high-quality lotion
NO PMLE symptoms while in the sun during my first trial use!!!
Moisturizing and nearly 100% natural and beneficial ingredients!
The only negative I could come up with was the slight yellow tinge to the lotion .... it should be noted that the key ingredient AGR is yellow, therefore a yellow coloring of the lotion is likely unavoidable! It was not an issue while using it at all. If I noticed a light yellowing on the edges of my swimsuit or clothing, it wasn't bad at all AND completely washed away in the laundry without any special stain treatment. I only note the color because I don't want you to think it's going to be completely white - but I also don't want there to be a staining concern ... I did not experience any issues whatsoever ... even with white suits and clothing.
The lotion is available only online right now by clicking {HERE}.
In conclusion:
I am so happy to have been made aware of this product and I was even more excited to share it with my readers and fellow sufferers! I cannot wait to test it out even more in February when we go to Jamaica... that will REALLY be a good test!! Winter/ Spring vacations is when my skin is the most prone to PMLE symptoms since I do not have a good base tan and my skin isn't used to the sun's harsh rays.
I will of course continue to update my blog with how the lotion is performing during different 'sun experiences'.... but I have to admit I am totally sold already! I love that I can choose my own SPF level (unlike with Eucerin) to apply over it and that the AGR ingredient is more concentrated in this product than the Eucerin Sun Defense (I'm basing that on the color and speaking with the developer of the product).
Thank you for stopping by and I really hope to hear from readers who try this product! I would love to know if it works as well for you as it did for me!! :-)
Previous PMLE posts:
Previous PMLE posts:
http://mommy2connor.blogspot.com/2012/07/pmle-polymorphic-light-eruption.html
33 comments:
How do you treat your PMLE rash once you get one? I figured out that's what is happening during my Caribbean vacations 3 years ago, so I only have to deal with it about once a year. So far, I haven't done anything other than maybe a benadryl and some hydrocortisone cream. But, I just got back from Aruba and I'm suffering from the worst reaction I've ever had. Instead of the little bumps I usually get, my legs are covered in super-itchy, oozing wheals. I took Claratin last night which didn't do much, and the cortisone didn't even phase my itch.
I'm very interested in the Shirudo for prevention; I'll definitely get some before my next trip to the beach!!
Thanks!
I use ice bag to treat the PMLE rash and it is no harm. Hydro cortisone have too much sideeffects to the body and it does work on me most of the time anyway.
I suffer from PMLE for over 10 years. It started only on my hands and now it appears to where every inch skin that has a splits second touch of lights. In the past 5 years my skin is affected by any form of yellow coloured lighting even including natural fire lights and energy saving lights. I have to changed all the indoor lights to cool white colour that is safe for my skin. During the day I have to keep all the blinds shut in the house. I live in Australia where the lights has been affecting me all year long, but worst in Summer. In the past I have tried some Sun Allergy products from C.B.H (http://www.usacbh.com/products/products.asp?articleid=555) persistently for half year. It doesn't seem have any effects on me and my condition just getting worse every year. I would like to try Shriudo, but it seem they do not ship to Australia. Some friend of mine introduced the Colostrum to me recently and i did some research and it shows lots of positive effects on allergy and immune related diseases which has not much effectiveness on other treatment. I have ordered some from NZ (http://www.mipcolostrumnz.com/?gclid=CK7b-auEt7MCFckhpQodalQAiw) and has been taken it twice a day for a week now. It hasn't shown much effect yet. I will keep take it for a month to see if is going to do any miracles. Anyway thanks for this blog and good to know that I am not the only one there suffering. Please keep the good work and I keep trying new stuff and report here.
Cheers!
I use ice bag to treat the PMLE rash and it is no harm. Hydro cortisone have too much sideeffects to the body and it does work on me most of the time anyway.
I suffer from PMLE for over 10 years. It started only on my hands and now it appears to where every inch skin that has a splits second touch of lights. In the past 5 years my skin is affected by any form of yellow coloured lighting even including natural fire lights and energy saving lights. I have to changed all the indoor lights to cool white colour that is safe for my skin. During the day I have to keep all the blinds shut in the house. I live in Australia where the lights has been affecting me all year long, but worst in Summer. In the past I have tried some Sun Allergy products from C.B.H (http://www.usacbh.com/products/products.asp?articleid=555) persistently for half year. It doesn't seem have any effects on me and my condition just getting worse every year. I would like to try Shriudo, but it seem they do not ship to Australia. Some friend of mine introduced the Colostrum to me recently and i did some research and it shows lots of positive effects on allergy and immune related diseases which has not much effectiveness on other treatment. I have ordered some from NZ (http://www.mipcolostrumnz.com/?gclid=CK7b-auEt7MCFckhpQodalQAiw) and has been taken it twice a day for a week now. It hasn't shown much effect yet. I will keep take it for a month to see if is going to do any miracles. Anyway thanks for this blog and good to know that I am not the only one there suffering. Please keep the good work and I keep trying new stuff and report here.
Cheers!
I used to get a "rash" of small, red pimple-like bumps that, if I rubbed or scraped them, would leave a deep red rash for days (if I left them alone, they'd usually go away on their own within a few hours). They only showed up on my chest and belly (and sometimes upper, inner arms), and only after sun exposure. I never had any idea they were of any medical significance, just thought it was some irritating, weird thing about me. I'm fascinated by what you've written here. Thank you!
Pour connaître le garçon, on serait considéré comme Air Max 90 l'objectif fantastique unique en raison de céleste en plus d'être la bienveillance corps tous les éléments de fixation et travailler pour le bien fort. Leur médecin familiariser avec les points qui ont connu une manie en ce qui concerne réjouissances; cela dit que ce serait une folie, dans, ici dans la conception de la confiance due au patient, la force organique infusé sous vraiment qui ont moins diminué que d'un niveau unique.
Hi!
Have you read this info?
http://www.toyosugar.co.jp/en/item/agrutin.html
Do you think eating those foods would help? my daughter has suffered with this from when she was 2 years of age and now is 11. I'm afraid she's being labeled now as having acne. If it was only that simple!
Great information from you, Lindsey. However, as a longtime sufferer, it would be great if you could do a new post with a quick summary that contained your best advice from someone seeking to prevent PMLE...something that includes the Shirudo product now that you've had a chance to better evaluate it. Going on a two week holiday to Mexico in late February and would like to enjoy it fully for the first time in a long time! Thank you.
This is great news Lindsey. I have been living in Turkey and here there is not much thing to do for PMLE sufferers. But always trying to protect myself from the sun is really something irritating. I don’t think that I can find this lotion somewhere here so I am looking for a website where I can buy it online no matter what costs. Can you advise me a website? Thanks a lot by the way.
Hi, I have been reading all of your blogs since being finally diagnosed with PMLE 6 months ago. I have had it for about 7 years - I am 39 now and the only time I didn't get any symptoms for a whole year was when I was pregnant (hormonal related?). Anyway, it came back so I am planning to try the Shirudo (bought today from the link you provided - international shipping is 20 dollars) and also bought helicopter (amazon - about £30 for 30 capsules). I have also found the AGR is present in Eucerins Sun allergy sun protection creme-gel SPF 25.
Ps forgot to say a huge thanks for all the information from you and others who have commented - I will let you know how I have got on - Penny x
First of all thank you for all of the great information...I don't feel so alone anymore. I have had PMLE for over 10 years now and it continues to get worse...but only when I go on vacation. I started taking the heliocare, niacin, beta-carotene, vitamin e and alpha lipoic acid, as I will once again be trying to do an island vacation and am hoping no rash. I did try tanning this time around and did have a reaction as well...but it seems to go away quicker. Oh and I am also using the Eucerin daily moisturizer. Thank you all again.
Hi
Ive just started getting pmle. It started last summer after having my baby.
Finally this feb I got diagnosed with pmle. I haven't a clue what to do with it. Being a muslim im covered when I go out. My face is the only place I get a rash.. n I dont want to start wearing the veil.
The hospital gave me sunsense sun block but it didn't help the other day and as I write this my face is swollen n red.
Just found this site so will see what else I can use. Any adv would be greatly appreciated.
I have 3 kids n do not want to spend being stuck indoors again like last summer. :(
Hello, my name is Chris. I have had PLME since I was 7 years old. My parents and I never had a clue what it was as a kid. I got allergy shots, biopsies, creams, wraps, etc and many, many trips to a dermatologiest office in Philadephia and to no avail. It still did not go away.
I was teased a lot as a child because the kids thought I would be contagious. It was hard for me. I had a very bad case of it all spring, summer and fall long. At one point, they said it was psycological and I liked to scratch myself and wanted to give me psyc meds. Thankfully my parent
did not allow that.
A doctor at the University of PA finally told me what it was when I was in my 20's, but the only treatment they had at the tme was light treatment to "toughen" the skin. I did that at the office, but felt I was sorta doing that myself by exposing myself in the sun a little bit at a time. I still suffer from this every year. I am going to try the Heliocare. I have never heard of it before. Not that I am glad that other people have this condition, but it is nice to know I am not alone. Blessings to all.
Hello, my name is Chris. I have had PLME since I was 7 years old. My parents and I never had a clue what it was as a kid. I got allergy shots, biopsies, creams, wraps, etc and many, many trips to a dermatologiest office in Philadephia and to no avail. It still did not go away.
I was teased a lot as a child because the kids thought I would be contagious. It was hard for me. I had a very bad case of it all spring, summer and fall long. At one point, they said it was psycological and I liked to scratch myself and wanted to give me psyc meds. Thankfully my parent
did not allow that.
A doctor at the University of PA finally told me what it was when I was in my 20's, but the only treatment they had at the tme was light treatment to "toughen" the skin. I did that at the office, but felt I was sorta doing that myself by exposing myself in the sun a little bit at a time. I still suffer from this every year. I am going to try the Heliocare. I have never heard of it before. Not that I am glad that other people have this condition, but it is nice to know I am not alone. Blessings to all.
Thanks for the update, I just ordered a bottle of Shirudo, I'll post here again with how it goes. After a decade of dealing with this, I would do almost anything to take my kids swimming and not have to wear a shirt! Thanks!
Good morning! First-- thank you so much on about your posts regarding PMLE. I suffer from it and LOVE (loved!) the sun but have become a girl how covers up and lathers on the blue lizard.
Question about your regimen for PMLE. My husband and I are thinking of starting a family soon. What can you and can't you use from your recommendations? Is the shirudo cream safe and FDA approved?
I think I remember you mentioning being pregnant and dealing with you PMLE but I am not sure.
Thanks!
Hi everyone,
I think my story is very typical, I am a 33 year old white female living in the UK. I've always loved the sun and tan well and easily. I always loved long sunny holidays until summer 2008 after the birth of my first baby when I had my first dose of PMLE on an early summer holiday to Greece. I've suffered every year since when I've been abroad towards the beginning of the summer and in the past 2 years from early sun in the UK although it does tend to be less likely as the summer goes on.
I never had any reaction at all before children even on hot holidays in the middle of winter when I hadn't seen the sun for months.
We are headed on holiday in a month or so and am so desperate for it not to be ruined AGAIN by the terrible rash, so unbearably itchy, so tired from not sleeping and feel like I look like a freak!
So I am going to start taking heliocare and beta-carotene and claratin in the next week or so until I go and then keep it up while I'm there to see if it will save me.
I've also had the rash twice this year already (doesn't bode well- I so hope it's not getting worse) by going out in the garden on very bright days in the UK the vague hope that if I suffer before I go I won't get it again while I'm there! Feels like self sacrifice but I will do it if I can have a happy holiday with my 3 babies. I do look reasonably tanned already but then again I have fairly tanned looking skin anyway and that hasn't helped before.
I'll let you know how I go.
I've also been doing lots of research on the subject and have come across lots of mentions of "Astaxathin" which is an anti-oxident supplement which would appear to be very relevant to PMLE and much cheaper than heliocare..I've not seen anyone on these blogs mention it..any ideas...anyone tried it?
Happy summer everyone hope we're all ok! xx
I really appreciated all your information. My 9 yo seems to have developed this (going to a dermatologist to confirm next week). He's on swim team, so staying out of the sun isn't really an option. The first night of this we struggled with the insane itching that kept him up all night. After trying everything from Cortaid to Aveno Oatmeal baths, we finally stumbled on a combination that provides some relief. Gold Bond Medicated Anti-Itch cream and oral Benedryl - the bumps usually goes away overnight and the anti-itch cream makes the itch tolerable (we're keeping a tube in his swim bag). Ice compresses also helped, but in very short bursts.
I'm anxious to try some of the other preventative suggestions such as the Banana Boat spray and Claritin. I'll have to ask his dr. about adding the other supplements.
So far, we've had 3-4 bouts this season on his back (sandbox and swim practice) even though he's gotten a base tan. We've even developed it after keeping a shirt on him all day, so now I'm looking at SPF clothing.
A week and a half away from my first holiday since finding this page and I'm trying my best to prepare! I've been taking Beta-Carotene for a week and a half now, along with Clarityn and a hair,skin & nails supplement. I've been using vitamin E oil on the areas that suffer worst (chest and neck) although that's an odd one as the oil is sooo thick!!
I've got my Eucerin sun cream (from Belgium!) at the ready...
I will report back on my return, wish me luck! Also, any other suggestions...!
Thanks for stopping by! Ok so jealous of those of you who can still get that Eucerin lotion! I firmly believe the alpha-glucosylrutin is KEY in preventing this itchy little nightmare! :-). I've been using the Shirudo Antioxidant Lotion this summer and I am thrilled so far! Also, you can mix that E lotion into another lotion or sunscreen to make it easier to spread!Good luck and keep checking back for even more info! :-)
I've only used the Shirudo lotion once, but for the first time in 11 years, no break outs! I spent 2 hours in the mid-day sun, with a regular sun screen that I normall use. It's been 48 hours (which is usually when it appears the worst), and nothing so far... I'll keep trying and make another update. Thanks for the information, this could be life changing!
I got diagnosed with PLE 2 years back and my outbreaks Are only on my face and neck! its gets pretty horrendous & really gets me down. I'm 9 months pregnant and the weather is 23 degress in scotland this week so I'm struggling. I even break out with a huge hat on and sitting under a parasol all day. I want to be able to play with my baby in the sun and go for lovely walks and holidays so I've just purchased shiirudo lotion to see if this works for me! There are so many posts on supplements that I don't know where to start, who can help? Also what SPF cream should I use with the shirudo lotion??? My first break out was in Cyprus when I got married and I was given terfenadine antihistamines over the counter and this cleared my rash in hours.... Amazing!!! But when I came back to the UK I found that these are no longer sold over the counter :(
I am so grateful to find this post and the comments. I am sitting here indoors on a holiday on Martha's Vineyard on Day 3 of having bumpy, red, very itchy arms, chest and neck. The itching is unbelievable.
I did a lot of research on medical sites but until this post did not find good treatment options. I will look for Gold Bond anti-itch cream and oral Benedryl while I am here and order the AGR products when I get home. Thank you!
Hi, Lucie here! Back from holiday for 2 days and still suffering pretty badly with PMLE rash. It's really sunny here at the moment too so strugggling betwwen knowing I should stay in doors not to aggrivate it further and wanting to enjoy lovely sunny garden. To report back on heliocare, beta carotene and claritin a month before I went and the samw when I was there bit double dose of heliocare and carotene and an antihistamine in evening..did it make a difference?..maybe. Maybe the reaction took a little longer to come out and didn't get severe until day 7 so it maybe bought me a couple more bearable days although I could tell it was coming. I'd love to try the shirudo but to ship to the UK it makes it £80-£90 per bottle I think...plus customs tax I believe...£100 for a bottle of moisturiser is beyond crazy ?? ..although I am pretty desperate..very depressed about feeling I am not free to holiday or play anymore and thinking of cancelling the next holiday I've booked! xx
Hi, I live in Australia and have been suffering from PMLE since I was 24. I am now 44!!! I never knew so many other people suffered from this. I seem to be the only person in my family/social group who has to sit under an umbrella or constantly covered up at the beach. It's very difficult in Australia to stay covered during summer as it's just too hot. Ive just ordered the shirodu cream in desperate hope that something will work as nothing else ever has. Good to know about the supplements as well.
Hi I suffer from pmle and would love to try the Shirudo Antioxidant Body Lotion but can not seem to get it in the uk :( would anyone know where or how I can get this ASAP
Thank you in advance xx
Hi,Nancy from Philly here, I purchased the Shirudo lotion for my trip to Grand Cayman Island and it worked great. I have had PMLE for over 30 years and had been miserable during yearly beach vacations with my family (itchy ugly rash all over, including my face, on day 2 or 3 every time- I treated with cortisone cream and Benadry and was relegated to indoors!) I once did PUVA treatments in my physician's office which worked but was a timely commitment and the medication made me nauseous. I have been following your blog and am thrilled that you recommended the Shirudo cream,(previous combinations didn't work for me) The Shirudo cream worked great!!!!!!!!!!!!!! I applied it all over 2-3 times a day, and all followed by 30 sunscreen before going out to the beach. At the very end of our vacy, (day 7) i did develop a slight non-itchy tolerable rash on my chest. I am so happy and even have a tan! Thank you, Nancy
Hi all, just wanted to have a little input into the topic of shirudo lotion. I'm 19 years old and have had pmle since I was about 13. I tried this lotion on my holiday last year and although it didn't work as great as I'd hoped it did help. I managed to survive around 5/7 days of my holiday with only mild rash on my hands and arms (worst place for me along with chest). On around the 6th day the rash appeared on my chest so I had to stop sitting in the sun. I applied the lotion every half an hour or so and then re-applied my sunscreen over the top. I also had a short course of UVA light treatment at the hospital before hand. Long courses of this treatment have worked wonders in the past but I only had enough time for a short course. Hope my review helped!!
I am so thankful to find this blog and read about so many others that have the same reaction to the sun as I do. I live in Florida so I am exposed to the sun pretty much every weekend if not every other weekend. I do not experience seasons like some of the others that have posted yet my skin never adjusts or gets better after repeat exposure. I am getting married later this year and have an 11 day honeymoon that I do not want to spend indoors because of this. Does anyone know where you can buy the shirudo lotion? I have tried finding it online and haven't been successful.
Carrie, see the link for the Shirudo cream at the top of the blog. I tired to copy it: http://www.shirudo.com/products/antioxidant-body-lotion
Nancy
Hi! I have just found out after a year of rash and itchiness that I have PMLE. I feel frustrated because obviously it's annoying to put on sunscreen EVERY hour and a half to two hours and so I've been trying to get used to doing that all that time. Plus I am still trying to figure out which sunscreen I like the best (not too thick, doesn't leave too much white residue...). Anyway, I'm feeling frustrated again because I just got off of an oral steroid they gave me to get rid of the latest rash which was all over and very intense, but once I got done with that prescription, I can feel some of the rash coming back on different parts of my body. I don't want to have to always be on a steroid and it takes some getting used to always having to put on sunscreen. Anyway....I'm thankful to have found your post and another one on PMLE. What do you use for when the rash comes..to help relieve the itchiness and to get it to go away again without using a strong oral steroid? I would LOVE to get the miracle lotion you mentioned, but $45 for 8 oz. is really expensive for us! I'm just hoping maybe I can dialogue with you and others as I try to learn how to manage this. Thanks a lot! -Alisha, San Diego, CA
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!
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.
Post a Comment