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Old 11-23-2003, 11:40 AM   #1
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Kackie HB User
Butterfly Rash Question

If one develops the "butterfly rash" is it constant? Or does it/can it fade and then reappear (for example not there in the morning, noticable later in the day).

Thank you for your help.

 
Old 11-23-2003, 11:49 AM   #2
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Re: Butterfly Rash Question

Hi Kackie!

The butterfly rash can be different in each person. But most of the time, it comes and goes with different things factoring into its re-appearance! Sunlight, flares, and things like that can aggrevate a Lupus rash. It does generally flare up and then go down again. It can even change during the day too. Do you have Lupus or you not diagnosed yet? Feel free to ask questions and all that, we are here to help!

~Angelic

 
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Old 11-23-2003, 12:24 PM   #3
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Kackie HB User
Re: Butterfly Rash Question

Quote:
Originally Posted by AngelicBrat
Hi Kackie!

The butterfly rash can be different in each person. But most of the time, it comes and goes with different things factoring into its re-appearance! Sunlight, flares, and things like that can aggrevate a Lupus rash. It does generally flare up and then go down again. It can even change during the day too. Do you have Lupus or you not diagnosed yet? Feel free to ask questions and all that, we are here to help!

~Angelic
Angelic: Thank you for your quick reply. I was sent to a rheumatologist by my GP because of severe pain in my shoulder (one in particular), joint pain and "skin pain." I've recently been diagnosed with hypothyroidism as well. I thought the rheumatologist tested for lupus and I think is leaning toward fibromyalgia (I see her again on Wednesday). For the last few weeks though, I've been getting a distinctive red flush across my face - it feels hot and tingly too. I came in the other day and my husband said it looked as though I'd been playing tennis. I was in the car this morning, and felt a "rush" of hotness and looked in the mirror and was actually scared. The redness ends very abruptly and evenly on both cheeks and just goes across the bridge of my nose. By the time I got home it had faded a little but my husband said he could see a distinct outline. I sincerely don't want to be alarmist, but many of my symptoms cross over the diagnoses of thyroid and fibro - in fact I have a few that aren't explained by either of them - nightsweats, fever with no other symptoms (i.e. cold, sore throat, cough) etc., and I'm also experiencing breathlessness. I'm having a echocardiogram on Monday. If I did have a negative "lupus" blood test nearly 2 months ago, then is it impossible to have lupus?

Thank you again.

Kackie

 
Old 11-24-2003, 12:01 PM   #4
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littleone1972 HB User
Re: Butterfly Rash Question

HI Kachie

yes it is possible to have a negative blood test. The very first time I got tested it came back negative although I had several of the symptoms. It was only because a friend of my mum's who run's the lupus group and has suffered for many many years with lupus recognised my symptoms and told me to push to get referred to an immunologist. There they run a series of 30 tests instead of the usual 4 or 5 and thats when my test showed up positively. My advice to you, you know your body and if you know something is wrong keep pushing. A doctor told my mum they other day that they class 80% as having some kind of stress/nervous disorder of people who come to see them cos they are just too busy. She said if you believe something is wrong, keep pushing and eventually a doctor who recognises signs will listen to you. Sad in this day and age but very true.

I had the butterfly rash, quite distinctive across my cheeks and bridge of my nose. It does fade but as angelicbrat says a number of factors such as sunlight, being out in the cold, going into a hot room, can make it more vivid and obvious and you can see how it gets its name! Hope this helps.

 
Old 11-24-2003, 01:29 PM   #5
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Re: Butterfly Rash Question

Hi again,

littleone is exactly correct! You can certainly have Lupus with negative test results. There are 5% of people out there that have Lupus and don't have the positive bloods. Also, it could be that your blood work is swinging from positive to negative.. it can change day to day! Lupus is a really tricky one. I don't think that the Fibro is the full diagnosis, often Lupus is misdiagnosed as Fibro too. Good luck with your echocardiogram!!

~Angelic

 
Old 11-25-2003, 04:53 AM   #6
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teresamarie36 HB User
Red face Re: Butterfly Rash Question

Quote:
Originally Posted by Kackie
If one develops the "butterfly rash" is it constant? Or does it/can it fade and then reappear (for example not there in the morning, noticable later in the day).

Thank you for your help.

Kackie,
I have often wondered about the same things about the butterfly rash, I also have it at certain times and then sometimes it just fades away, and then it reappears whenever it wants to.
Thanks for satisfying my curiosity

 
Old 11-25-2003, 05:26 AM   #7
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Kackie HB User
Re: Butterfly Rash Question

Quote:
Originally Posted by teresamarie36
Kackie,
I have often wondered about the same things about the butterfly rash, I also have it at certain times and then sometimes it just fades away, and then it reappears whenever it wants to.
Thanks for satisfying my curiosity
Littleone and Angelic: Thank you for your comments. I appreciate them.

I rescheduled the echo until after Thanksgiving because of a pressing job deadline. I am, however, keeping my rheumatologist visit on Wednesday. I'm interested in hearing if she thinks the symptoms are significant enough to run tests again.

Kackie

 
Old 11-25-2003, 06:14 AM   #8
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Hewie HB User
Re: Butterfly Rash Question

Hi Kackie...

I just joined this site a couple of weeks ago and it's great...! Hope the support helps you like it has me...

Re: your question on the butterfly rash (Malar rash)... as already said it can vary - actually it can vary from a faint pink blush to a really red raised or unraised rash or blush. I went to The Lupus Foundation site yesterday and it is great! in explaining all the questions I've had... Here's the link:

[url]http://www.lupus.org/[/url]


I had a question about blood tests changing from positive to negative and the butterfly "rash" on the face being more of a blush and CNS Lupus as I have many neurological symptoms and Antiphospholipid Syndrome and many others... and on this site you can find thorough explanations for everything including what info to take to your doctor... Just go to the site and on the left upper part of the screen under Education, click on Lupus Facts and Overview... then go from there... I know it will help you too!

Take care.... Hewie

 
Old 11-25-2003, 09:29 AM   #9
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Re: Butterfly Rash Question

Hey everyone,

Hewie- Be careful about posting links to other websites, the moderators here are sticky about posting other sites on the board. You can go into the "private message" icon at the top right of this screen and post them in private to people if you like. That way just you and whoever you are sending it to see it.


Talk to you guys later!

~Angelic

 
Old 11-25-2003, 10:51 AM   #10
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Hewie HB User
Re: Butterfly Rash Question

Ok.... thanks for the tip!

 
Old 11-25-2003, 03:11 PM   #11
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teresamarie36 HB User
Re: Butterfly Rash Question

I have the butterfly rash and I so often wondered why my nose & cheeks would get so red if I went out in the sun or got really hot. and sometimes even when I'm inside just sitting, all of a sudden I can feel like heat coming in on my nose and cheeks and then, there it is again that same weird reddness again. Thank you all for all your support

 
Old 09-13-2004, 08:44 AM   #12
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Short Cake HB User
Re:lupus

Quote:
Originally Posted by Kackie
If one develops the "butterfly rash" is it constant? Or does it/can it fade and then reappear (for example not there in the morning, noticable later in the day).

Thank you for your help.

 
Old 09-16-2004, 11:14 PM   #13
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UT_mom HB User
Re: Butterfly Rash Question

Hi everyone,
I know this thread has been going awhile but I just wanted to add if I could. I got my first butterfly rash at a point when I entered a new flare (which is still ongoing 3 months later) and mine was quite raised and noticeable the first couple of times it showed up. Then it seems to have calmed down some but is generally present to some degree most of the time. I always notice it more when I get out of a bath or shower, after sun exposure (this makes it worse for several days not just hours), and when I am tired or otherwise feeling an increase in my other symptoms like joint pain and fatigue. I have not had a biopsy of this rash. I am actually being treated right now for acne rosacea (which I don't think I have) just to rule that out. So far I haven't responded at all to the noritate cream. I'm supposed to use it for a full two months so I'll let you know. I really believe that what I have is a malar or butterfly rash which is related to lupus or whatever it is that's going on with my body but not solidly diagnosed yet. The reason I believe this is because as my disease activity worsens, so does my rash. It's almost like my face is a gauge to how I feel inside. To anyone who's had this rash biopsied.... is the scar quite bad? The dermatologist I'm seeing does not want to biopsy my face because of scaring. Instead he wants me to try an oral antibiotic with the cream I'm using for two months. I want to do everything I can to help myself find a diagnosis, but personally I'd rather have a scar on my face than be on an antibiotic for two months. I already have terrible yeast problems and can't take antibiotics for a few days without getting a doozy of an infection, plus my birth control will not be effective. Anyway, I have my reasons for now. I don't think the dermatologist really listened to me at my follow up visit yesterday anyway, you probably all know the feeling.
Love to all!
Shawnee

 
Old 09-17-2004, 03:37 AM   #14
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elegantgi HB User
Re: Butterfly Rash Question

Hello All,
I have a buddy at work that was diagnosed with Discoid Lupus. Sometimes his butterfly rash if fullblown and it goes from cheek to cheek and across the bridge of his nose. Sometimes its the full face (forehead, chin, and the above areas), other times it will show up only right beside one side of his nose and has even showed up on the end of his nose. His rash however, is never what I would call red but almost a violent purple or a brown and very thickened looking rash. I have also had the reddish brown areas show up beside the nose and have an elevated area on each side of my cheeks but almost right under my eye. Could this also be the malar rash????? Thanks...ElegantGI

 
Old 09-17-2004, 02:58 PM   #15
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Re: Butterfly Rash Question

Elegantgi & Everyone,

I'm no doctor but, in my mind, I've always associated the malar (butterfly) rash with *SLE*, not with DLE (discoid LE).

Maybe we could browse more on the two rash types---"discoid" and "malar" (or "butterfly"), as the spirit moves us----then report back? Just a thought.

My best to all, from Vee

 
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