I have recently been diagnosed with PMLE. I'm seeing a specialist soon. What should I ask them?

I have recently been diagnosed with PLE. I have had this condition since I was a child. I have tried everything over the years to help this - medications, creams, sunblocks, etc. Nothing seems to work except stay out of the sun, which is not a realistic option. I'm not a sun bather. I just want to live a normal life. The condition seems to be getting worse as I get older.

I'm seeing a specialist soon. Are there any particular questions I should be asking them about new treatments?

My arms and face are starting to scar now from the breakouts and rashes. I'm also getting blisters now as I get older.

Blister formation and in particular scarring are not typical features of PMLE. We assume that you have undergone a thorough dermatological workup excluding other causes of blistering and, in particular, scarring photosensitive dermatoses, such as porphyria.

PLE treatment is aimed at either preventing or suppressing the disease. Sun avoidance, the use of broad spectrum sunscreens and topical steroids are the first line of therapy used. In more severe cases, phototherapy with or without concomitant systemic steroids is used and in some patients systemic immunosuppressive drugs are employed.

If your PLE is severe, your dermatologist may recommend one of the following: 

• Hydroxychloroquine - generally prescribed to prevent and treat malaria, the medication also may suppress or prevent an inflammatory rash provoked by the sun
• UVB or PUVA (psoralen plus UVA). A special form of ultraviolet therapy than combines medication with UVA radiation. It is administered for several weeks in the early spring to prevent photosensitive reactions.
• A short course of oral steroids - are used therapeutically to help clear up sun rashes. If you are going on vacation, you might want to ask your doctor about prescribing a short course of oral steroids.