LOL another diagnosis - anyone here have Polymorphic Light Eruption?

[Skylar]

I'm thankful that my rheumy got me an emergency appointment to see the dermatologist - and not only that but the one who has an interest in skin diseases in patients with autoimmune diseases.

Polymorphous Light Eruption (PLE or PMLE) is basically an allergy to sunlight. I've been struggling all spring and summer with this miserable itchy, ugly, painful rash that I get with just a couple of minutes exposure to sunlight. I've had to buy special long sleeved UV protective clothing, keep all parts of my body, including my hands hidden, wear a large hat and heavy mineral makeup to go outside in order to avoid a rash. This has put quite a dent in any outdoor activities. Wiki has an entry if you want more info.

I've come across some research indicating that it may be implicated with autoimmune disease. Ironically I was blaming what I thought were side effects from Plaquenil and wanted to go off it but my Rheumy said he really didn't want me to go off it......... turns out Plaquenil is used in the treatment PLE. LOL So I'm wondering if anyone here has been diagnosed with PLE? Has anyone heard of this or know someone with it?

[Joe S.]

When I read your subject line, I was wondering if you were glowing. Thanks for the extended explanation.

[Skylar]

LOL Joe, I am glowing- angry red  ; it is a weird name for this disease.

[bonnieblee]

Yeppers, and if you give in to the itching and scratch untill you bleed, then you have polycolored scars

[quilt4fun]

Skylar,
  That's a "me,too".  I just didn't have a name for it.   I love to work in my flower beds - but they sure are neglected this year!  I wait for overcast days, and watch for the times when they are in the shade and work til the sun gets close to me. I also wear the UV shirts, large hats and Eagle Eyes sun glasses.  Would love to go fishing in the bay with my son, but I don't dare--ugh. There's no cover on his boat.

[Sooki]

I had a sun reaction on my skin for the first time this spring - when the wimpy PNW sun peeped a tiny bit.  My hands prickle within seconds of being in the sunlight.  The derm said it was either PLE or subacute cutaneous lupus. She said it was easy to tell with a skin biopsy.  The biopsy was no big deal, on my arm with the rest of the rashy stuff.   It came out the latter.  My rheumy later said, "I guess it's more accurate to say you have lupus with secondary sjogrens now".  I had read somewhere that the polymorphous one was helped by a little bit of sunlight every day to desensitize the skin, but you're experience seems to contradict that.  Lupus means no sun.    So like you guys, I wear hats, goggles, and especially gloves, longsleeved spf shirts, etc.  whenever i go out. Even to pop out to get something out of the car. My hands were the worst so I found some sun gloves (lightweight fingerless); I'm going to look for nylon Sunday gloves for girls.  Anyway, I upped my plaquenil dose to try to help it, but no luck.  Recently, my rheumy recommended CellCept in addition and I think that's going to help.  My hands are less red after a week.  Ironic - I crave sunlight - now I'm in the house with all the doors and windows open.

[Joe S.]

Sooki, Are you taking D3?

[A66eyroad]

One of the best things about reading this forum is when I get an "Aha!" moment. I get little itchy blisters on the sides of my fingers anytime I go outside. I've started getting them on my lips, too. I've always just chalked it up to getting older. Who knew Sjogren's was so much fun?!?!?   

[Sooki]

Joe - Yes, I started taking D3 last winter.  My blood tests went up from 30 to 40 ng/ml.  It makes me feel better, but doesn't seem to help the sun reaction.  Thanks for asking!

[Joe S.]

Thanks Sooki. I asked because I did not see it in your signature.

[Skylar]

Yeppers, and if you give in to the itching and scratch untill you bleed, then you have polycolored scars

Hi Bonnieblee - yes I know. I get psoriasis if I'm not careful and I've scratched the skin off my shins once so bad that even the Dr. was afraid it wouldn't grow back. So I've learned not to scratch an itch - which is painful in itself. LOL Polycolored scars - well I do like to wear pretty colored clothes, but I think I'll pass on colorful scars.

[Skylar]

Skylar,
  That's a "me,too".  I just didn't have a name for it.   I love to work in my flower beds - but they sure are neglected this year!  I wait for overcast days, and watch for the times when they are in the shade and work til the sun gets close to me. I also wear the UV shirts, large hats and Eagle Eyes sun glasses.  Would love to go fishing in the bay with my son, but I don't dare--ugh. There's no cover on his boat.

I'm glad to see I'm not alone - misery loves company.

I'm trying to work my way up to survive small amounts of sunlight - Monday to Friday I can apply prescription steroid cream to my skin so early in the week I'm going out for short times in the hope that I can adjust - sort of like how people build up to getting a sun tan. But when I go out for a walk which is a long time in the sun I cover up completely . This is the first week and so far it seems to be working. I had a small rash on my chest the first day but it's under control and not itching right now so I'm hopeful I can built up resistance.

Maybe you can try the same thing. I know how you feel about missing out on things like fishing with your son - it's frustrating.

[Skylar]

I had a sun reaction on my skin for the first time this spring - when the wimpy PNW sun peeped a tiny bit.  My hands prickle within seconds of being in the sunlight.  The derm said it was either PLE or subacute cutaneous lupus. She said it was easy to tell with a skin biopsy.  The biopsy was no big deal, on my arm with the rest of the rashy stuff.   It came out the latter.  My rheumy later said, "I guess it's more accurate to say you have lupus with secondary sjogrens now".  I had read somewhere that the polymorphous one was helped by a little bit of sunlight every day to desensitize the skin, but you're experience seems to contradict that.  Lupus means no sun.    So like you guys, I wear hats, goggles, and especially gloves, longsleeved spf shirts, etc.  whenever i go out. Even to pop out to get something out of the car. My hands were the worst so I found some sun gloves (lightweight fingerless); I'm going to look for nylon Sunday gloves for girls.  Anyway, I upped my plaquenil dose to try to help it, but no luck.  Recently, my rheumy recommended CellCept in addition and I think that's going to help.  My hands are less red after a week.  Ironic - I crave sunlight - now I'm in the house with all the doors and windows open.

I really appreciate what you wrote. I hope mine is PLE and not lupus - I've had that threat of a lupus diagnosis hanging over my head for a long, long time (probably many here have had that too?) but the various rheumy's always end up saying - they are still holding back on making it definitive. I didn't have a skin biopsy to check, just dermatology exam. I'm trying the desensitization - and maybe if that doesn't work, maybe it's back to the rheumy for more blood work looking yet again for lupus? I was thinking of buying gloves - OMG I just hate the idea of wearing gloves in the summer too. So far my hands were doing okay until I last weekend so I'm hopeful, otherwise I'll look for those gloves you mention. I did find some good buys on UV protective shirts on Sierra Trading - they were closeouts for about $20 each. Hate to spend money on something like this. Thanks again for your response.

[Skylar]

One of the best things about reading this forum is when I get an "Aha!" moment. I get little itchy blisters on the sides of my fingers anytime I go outside. I've started getting them on my lips, too. I've always just chalked it up to getting older. Who knew Sjogren's was so much fun?!?!?   

It may not even be related to Sjogren's because normal people get it too - but it seems for me that when I'm in a flare is when I get kinds of weird things happening - not when I'm feeling well. In my research I've come across people getting it on their lips - I hope it's not too painful for you.

[really?]

For three years I got these little red dots on my hands and feet, they would fade and then the skin would peel from my hands and feet,, it was odd, I saw a dermo whileit was goingon,, he took a few samples of the skin and called me to tell me it wasent fungal but had no clue what it was, and this guy was highly recommended,, go figure,, like the doctor told me the other day,, you may have something thats completely new,, ya bud,, I jsut fell off the turnip truck too, like I;m theonly one in the history of the universe that has all these strange things going on,,