malar rash...how long does yours last?

[college402]

just wondering

-how long diagnosed lupus patients butterfly rash lasts?
- do you feel hot and overheated when you get it, or heat brings it on?
-do you get it on your chest and arms?
-is it always raised or feels rough?
- do you sometimes get a splotchy looking rash on torso and arms?
- does  it always go over the bridge of your nose?

my questions are because my doctors are telling me that they dont want to say i have Systemic Lupus Erythematosus but they also dont want to say i dont. and they seemed a little uncertain that my rash didnt last long, wasnt rasied or rough, as well as that i felt hot and overheated or was brought on by such

I  am VERY fair skinned and am susceptible to rashes and it is very apparent when i have a rash because of this, thats also why the doctors werent convinced it was the malar rash. i am being treated with a mild drug for my other syptoms (symptoms)...
as i have been told knowledge is power, so i thought why not consult those most familiar...people who have it!
thanks!

[postie]

I am not diagnosed with Lupus yet but am going to a Hematologist tomorrow.  I've been under a Rheumy's care for 3 years going on 4 years.

But I can answer about my rash and the Rheumy has said my rash on my face points more toward Lupus and not Rosacea.
My rash has been on my cheeks and nose and neck for 10 years.  I'e had CFIDS for 10 yrs.  I do not have a rash on my arms but yes on my chest.  Sun makes it worse in less than 5 minutes.

My rash has never been raised and never rough.  ALWAYS smooth. I've never had a splotchy looking rash.  My rash continually stays over bridge of nose and cheeks and neck and chest.

Hope this helps a little bit.

[Irishjig]

I have systemic and cutaneous lupus.  I am a poster person for mylar rashes which are definitely brought on by any exposure to the sun.  I also have rosacea; when I get out of a shower or get overheated, I am one red face (and body).  The mylar rash is distinct; I have it for a few days and it seems to burn itself out (literally, skin will flake off and that's how I know the rash is going away).  Elidel cream is very helpful.
The older I get, the more sensitive I am to the sun; it seems to trigger many symptoms

[mercygracious]

Hey, how come you have not been diagnosed with Lupus?  Sounds like you need a new Rheumy????  What do you think going to the hemoltologist will do for you?  Are you looking for them to run some kind of different tests that havent' been run already or what??

[postie]

Hi mercygracious:

I have no idea why I haven't been diagnosed with Lupus.  I guess your guess is as good as mine.  It shows negative on the Lupus tests for the Sm and that other test.  I don't know what you would have to have to be definitely diagnosed with Lupus?  Any idas?

I was supposed to of been sent to a Hematologist and instead the office sent me to an Oncologist.  The reason I was being sent to a Hematolgist was because my neutrophil's were dropping.  So that's why the Rheumy sent me there.  I already had a bone marrow aspirate done 10 years ago when I first got sick from a Hematologist.  I didn't ask to see a Hematologist.  They had me go because of my losing neutrophil's.  I had no idea what the doc was going to do.