Author Topic: PLME Prevention/management  (Read 2967 times)

0 Members and 1 Guest are viewing this topic.

Offline efan

  • Registered member
  • *
  • Posts: 11
PLME Prevention/management
« on: Wednesday May 11, 2011, 07:33:56 PM »
Hi, i just found this forum and saw that there are many people out there that have the same medical condition as i do. First of all, i am not a doctor and do not pretend to be one and the following is my personal experience with PLME (polymorphous light eruption). First realization you have to accept: there is no cure for this condition. You will have a tough time even getting a proper diagnosis. i live in Boston area where we have the best MD's in the world and it is still mis-diagnosed. Now that you have accepted that there is no cure, let's talk about 2 things we can do: Prevention and management. By the way, I've been dealing with PLME for 30 yrs now and it sucks.
Prevention: staying out of the sun is the best option but if you are not a vampire this is not an option. Wear UV protectant clothing, Under Armour and other manufacturers make UV clothes now.Stay out of sun during peak times (10-2). Limit your sun exposure, and make sure you have a UVA blocking sunscreen. I have recently found a product called Athelios w/Mexsorex and it works fantastic at blocking UVA rays, but it is expensive.
Management: If you have an outbreak of papules on your skin, you can ask for prednisone, this helps you once you get an outbreak. Do not break the papules by itching them, I find running my skin under scalding water helps to reduce the itch, just my experience with this. Predisone messes with your metabolism and you gain a ton of weight with it. I've recently been prescribed (clobetasol propionate .05%) and this cream helps to get rid of the outbreak as well. If you plan to go away to Florida or somewhere warm and sunny you better prepare or you will ruin your vacation. i usually start aking predisone to "prepare" my bosy for the Sun that I am about to receive, it worked well for me a few years ago when I went to florida, along with putting clobetasol cream as well.
I hope this helps some of you out there, i have much more experiences to share with you in my 30 yrs dealing with this. If you want to me to post more "home remedies" i use just respond to this post.
If you have PLME, you have my condolences, as it is a tough illness to deal with. It is not life threatening but it takes an emotional toll on you as you cannot hide a skin ailment

Offline merrymom

  • Registered member
  • *
  • Posts: 5
Re: PLME Prevention/management
« Reply #1 on: Wednesday May 11, 2011, 08:37:31 PM »
just replied to your other post before I saw this one. But I will also add here that it has been impossible nearly finding anyone that can treat this condition for my child. The "specialist" from Riley's in Indy even told me with the research I had done I probably knew just as much if not more than him...very frustrating...

Offline efan

  • Registered member
  • *
  • Posts: 11
Re: PLME Prevention/management
« Reply #2 on: Wednesday May 11, 2011, 09:10:54 PM »
It is often diagnosed as "eczema, psoriasis, or contact dermatitis" the one way you can be sure is to get a biopsy of the papules or lesions your child has. I suggest you try to get an appt with a dermotologist that specializes in PLME. In massachusetts you can try the Massachusetts General Hospital Dermatology division, but again, it is far from where you are and they need to see the outbreak when it happens. You can get a biopsy in Indy and have it sent to Mass General for them to diagnose. Look up Dr. Wanner or Dr. Schulock in mass General Dermotology. Can you tell me what the syptoms are?

Offline efan

  • Registered member
  • *
  • Posts: 11
Re: PLME Prevention/management
« Reply #3 on: Saturday May 21, 2011, 11:07:36 AM »
Just want to inform all you of this product Iíve been using, Athelios by LaRoche Posay, hereís the link http://www.anthelios.com/anthelios-aboutmexoryl.html : Iíve been using the product this spring and so far have had great results. I have not had a breakout using this product, and Iíve been playing golf every weekend. Usually I have a few breakouts by now and using prednisone to get rid of it. I have moderate/severe PMLE and weíll see if this product works as well in the summer when UV rays are at their peak. It is pretty expensive (about $30 for a 1.7 oz tube)but affordable and available on-line only. Iíll keep you posted, keep the faith!!

Offline e7rick

  • Registered member
  • *
  • Posts: 35
  • Gender: Male
Re: PLME Prevention/management
« Reply #4 on: Monday June 06, 2011, 12:37:50 PM »
Hi!

I can confirm efan's recommendation. I have used a sunscreen with Mexoryl now for 1,5 years and it works really well.

/Richard

Offline efan

  • Registered member
  • *
  • Posts: 11
Re: PLME Prevention/management
« Reply #5 on: Tuesday June 07, 2011, 12:17:04 AM »
Richard,
Thanks for the response!! I wish i had this product 30 yrs ago. So far so good with this product.

 :)