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mcphena
08-03-2009, 08:41 AM
I just got diagnosed with Lupus, but I'm not entirely convinced. Here is my current question. I have this so called butterfly rash on my face. I've had it for years, and it's almost always there, but there are times when it's barely visible, and other times when it's clearly visible. Also, there are times when I can FEEL it like it's getting HOT on my face, and if I go look in the mirror then, it will be bright red. But later that same day, it may just be pink again. Is this something that happens with lupus, or is this rash just something that comes when you have "flares" and is gone when you don't? Thanks a lot.

rob
08-03-2009, 09:07 AM
Hi Mcphena,

No two people have the same experience and symptoms with Lupus. That being said, what is happening to you sounds pretty typical. Flares, and their associated symptoms are unpredictable to say the least. I've been living with Systemic Lupus for nearly six years, yet I have never once had the telltale "butterfly rash" on my face. I get rashes everywhere else it seems.

My rash usually happens under my arms, and on the front of my thighs. It often feels hot, like there's a fire under the skin. It turns red, pink , and back to normal really fast. It comes on quick, stays as long as it wants, and leaves, or moves to a different part of my body as quickly as it came. No two people have the same experience. I wish I could give you some solid answers, but the nature of the disease doesn't allow for that.

Anyway, welcome to our group, please make yourself at home!

Rob

brandichi
08-03-2009, 12:02 PM
Hi Mcphena,

As Rob said, each of us can experience this disease differently, so it's hard to say what is typical for lupus. I do get the butterfly rash and have it most of the time. However, when I'm not in a flare, the rash goes away either all day or at least for the morning, then comes back towards afternoon or evening, but not as bright or hot as when I'm flaring. And yeah, I can tell when it's really bad because my whole face feels hot. Ugh!!

Welcome to our group - this is a great place with wonderful people!

lucky7
08-03-2009, 01:54 PM
HI Mcphena!!!!! WELCOME!!!! I just wanted to tell you that I TOO get the butterfly rash JUST as YOU explained. As Cheryl and Rob ahev said, we all can have things be the same yet so different as well. BUT, i DO get the rash EXACTLY like you. XXXXXXXXX

SandyR
08-03-2009, 05:36 PM
Hi McPhena!

I haven't been given a formal Lupus dx yet, but I experience my rash EXACTLY like you and Jeannette as well. Sometimes it only looks like a slight flush and sometimes it is really not even there. It really has a mind of it's own. Welcome to WHL.

Sandy

mcphena
08-04-2009, 07:28 AM
Thank you guys for answering my question. I guess I was hoping you would all say "that's not lupus!!" LOL. I'm in denial. I have quite a few other symptoms and questions, so maybe I'll post another one now. Thanks again.

crmj1183
08-04-2009, 06:07 PM
Oh yeah,


Its the lupus, the fact that your face gets hot is different, but my face gets red after i wash it. or pink. But I kind of hve a red complexion? I dont know. Its the lupus and yes it just happens whenver , wherever.

Chriss