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Casperburger
06-20-2011, 04:37 PM
Hi! My name is Celeste. I started with a weird rash on my face that was butterfly shaped and did not go away. DR after DR, no one can diagnose. I stay completely out of the sun now, which is hard to do, because, I am a Florida girl who loves beachcombing and kayak fishing. The bloodwork came back negative for Lupus, but all the docs point towards a Rhmotogist (sp). Friday went for a boat ride with SPF 50 on 3 times, felt great, came home, and the blisters just started. Bynadry helped, and now I am peeling - it gets worse every week. Please give me some advice. Does this sound like Lupus? Thank you!

Peridot20_Gem
06-20-2011, 05:04 PM
Hello Celeste,

Welcome to our lovely family at WHL and it's nice to have you with us.

I've had the butterfly rash (Marlar Rash) like yourself, you do need steriod based creams to remove it as they're excellent and work quickly and please keep out the sun and try and avoid it especially if it's causing blister rashes besides seeing a Rheumo specialist you do need to see a Dermo who will run bloods besides to see what your suffering with skin wise...like myself.

It does sound like Lupus and i've only just stated that Lupus can give off false readings, it plays with the bloods and makes them fluctuate, where something could be positive and come back negative.

You need to keep covered up well and wear sun bloke besides hat the lot and if the sun still irritates you get inside and that goes for the shade.

I'm attaching a link on Lupus for you to read up on.

www.nhs.uk/Conditions/Lupus/Pages/Introduction.aspx

((Hugs Terry)) xxx

steve.b
06-20-2011, 06:51 PM
welcome celeste.

sorry i have no advice, but wanted to sy hi

tgal
06-20-2011, 07:47 PM
Hi There and welcome to WHL. We are so glad that you joined! Other than the rash and the sensitivity to the sun do you have any other symptoms?

lovedbyHim
06-20-2011, 08:44 PM
Hi celeste, welcome to WHL! Without other symptoms I think it would be hard to say. My mom had rosecia (not sure how to spell it). Her face looked similar to mine, but it was not lupus. Hopefully time will tell and a good doc will have a proper diagnosis for you.

Gizmo
06-20-2011, 09:06 PM
Welcome Celeste! Mari and lovedbyHim are right, without other lupus symptoms, you can't really say that it's lupus. A rheumatologist is a good place to start, as is a dermatologist. The derm might be easier to get in to see - it seems like most folks wait for months to see a rheumatologist.

Sun exposure on water or snow is much worse because you get a double dose of the reflected UV rays, and a hat only protects you from what comes from above, not from the reflected light. If I lived near the beach, I would go crazy having to avoid the sun, but you are wise to continue to do so until you get some answers.

Casperburger
06-21-2011, 05:51 AM
Good Morning! Thanks for all the advice. I have a great dermo, and she asked that my doc send my bloodwork, which shows no Lupus. I have no other symptoms, other than occasionally my finger joints hurt, but frankly I think this is from excessive typing. Rocacia (sp) is out according to my dermo. And Gizmo you are right, the sun exposure on the water Friday was much worse. So I am using SkinCentials from my Derm and I wear it everyday, and love it. Is there something else you would recommend before I see a rheumo? I have a much needed vacation planned for my Hubby and I and it's all about water and sun. Please advise.