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...
as i have been told knowledge is power, so i thought why not consult those most familiar...people who have it!
thanks!

[AlyNich]

I have SLE and my rashes are not raised or scaly as far as duration for some reason mine are now permanent and we're not sure why

[JAltair]

I've been diagnosed with Lupus for a number of years now.  I also have CFS and FMS.  Like you, I was on a merry-go-round and wondering what was causing all the symptoms I was having. The labs came back "weak positive" for the Lupus, I was getting the malar rash, all the other symtoms, and then I was diagnosed with Lupus.  My first malar rash appeared after being outside at a reunion . (thought I was being careful to not get a lot of sun) for an afternoon.  My butterfly was purple and everyone wondered what the heck.  I did take pics.  It wasn't raised, just flat and purple.  Lasted for maybe 4 days.  Since then, I have had the red rashes, not raised but butterfly over cheek bones and nose.  My photosenstivity seems to be the main culprit, yet have gotten them in the evening when I get hot to the touch.  From my experiece, the rashes are as individual as people are.  The rash can be textbook or not. Good luck with your search.

[deishyde]

I have been diagnosed with SLE by by general physician.  I have been referred to the rheumatologist and am waiting for the appointment.  I am very worried because I have had pain and bad skin for most of my life but have never thought of it being something like this.

I have had the rash across my face on several occassions and it just went away.  The rash comes around the time of mid cycle most commonly and is raised, rough and pink to purple, but looks nothing like the malar rashes I have seen online. I too use Elidel and I also use an antifungal called Fazol.  Between the two the rash seems to go away.  I have been on Hyrroqychloroquinone for about 15 days and it seems to help greatly with the pain, though it has not gone away.  The rash went away shortly after I started it...  I guess I will have to check back into this discussion in another two weeks after I see the rheumatologist.

[knvv]

Hmm.. my rash seems a little different than ya'lls rash. I was not 100% diagnosed with lupus, though my oncologist is almost certain. I'll find out when I go to the Rheumy next month. Any ways... twice now I got a weird rash on my face, more of a wish bown style. Down my nose, near my cheeks.. But it wasn't a rash rash.. It looked more like little broken blood vessels and when I took antibiotics both times for it? It went away in just a few days. I have sleep apena too, and I wear a facial mask that this rash took the course of.... but I've been using my c-pap machine for years.. since 2008 and I don't think that mask was the reason for it... Do your rashes go away on it's own? Permanent? Antibiotic helps? I'm just curious... I also got a itchy rash one time all across my chek, neck, a little on my back and my left lower cheek too... though hydrocortisone took care of that.

[Mapato2]

my rash is always there, but it gets very red while in a flare. I do get it on my neck and chest also. If I'm in the sun for very long it will feel rough, but always goes back to smooth. Hope this helps you.

[AlyNich]

Thank you for this I've been wondering for a while now if I was the only one who's rash never goes away

[bbarmygal]

I have been seeing a rheumatolgist for 4 years off and on. I just now have developed the mylar rash and lesions. Does any one else get these pimple like small little blister that turn into scabs then go away? I also had horrible sunburn on face and arms and got this spiral scaley shaped soar immediatley after coming inside and it turned into a soar as well? All ive been told is I have too many symptoms not enough blood work to support. one positive dsdna and cardiolipin and smooth muscle liver antiboty. So its Undiffrentitiated connective tissue disorder slang for IDK!!! ohh with tons of muscle and joint pains and hand feet and leg swelling and my ankles feel like they are broke the hurt so bad then at times i am fine. So frustrated!!!! Thanks for any input.

[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.

[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??

[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

[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.