View Full Version : % of you that get butterfly rash?
07-22-2009, 03:05 PM
Just curious...is there anyone else that has been diagnosed with Lupus that doesn't have the butterfly rash on their face?
I do not (but have other skin issues) and last week I was in the hospital getting ready to go into the OR for surgery and the nurse saw the Lupus diagnosis on my chart and looked at me (with raised eyebrow) and said "You don't have the butterfly rash. Why did your doctor diagnose you with Lupus???"
I just gave her a generic "I had test results and other symptoms that indicated Lupus. My doctor feels confident in her diagnosis." I was mad at her attitude but "luckily" I quickly changed my focus to the fact that I would be in surgery in 5 minutes. haha :wideeyed:
Do most of you get the butterfly rash?
Thanks in advance for your responses!
07-22-2009, 03:09 PM
I am complicated.Have been diagnosed with Lupus then not.Now being tested for it every 6 weeks.I have a light rash,look on my profile.....but is it ever there when i see the main doctor who needs to see it ''NO!''...so im taking that photo with me next time.Its always light.But you dont have to have the rash to have Lupus.Good on you for taking her mind off it.:nah:xxxxxxxx
07-22-2009, 03:19 PM
What a very strange thing for a nurse to say, and quite incompitant too.
Not all ppl with lupus have the malar rash
maybe she was having a bad day or summin or needed to put someone down a few notches, silly ass.
how did the op go anyway?
07-22-2009, 03:48 PM
You should have said..education starts by opening a book and apparently, you haven't opened very many in your field of medicine....
Oh, by the way I must have Lupus I have the diaper rash..
07-22-2009, 04:12 PM
Good one Oluwa,
I find some of the nurses in my profession can be cold and arrogant. I must apologize on the behalf of the people in my profession who are unprofessional.
Lack of knowledge is something, as I went through the same skepticism when I was diagnosed.. My response was it was a good thing i was diagnosed by a rheumatologist not by a nurse :laugh:
people can be so cruel
It's been 5 1/2 years since my SLE diagnosis, and I have never, not even once, had the butterfly rash. Like you, I have skin problems, but not on my face.
About that Nurse, there's that old saying that says-
"It's far better to stay quiet and be thought a fool, than it is to open one's mouth and remove all doubt"
You should get that printed up on a business card and give it to this nurse if you ever encounter her again. Sometimes I find it just baffling how some people in the medical profession can be so incredibly ignorant.
07-22-2009, 08:21 PM
I have the rash but not the diagnosis (yet). Like Angel, mine is darker on different days and almost invisible on other days.
07-23-2009, 06:29 AM
I've never gotten the malar rash on my face, but I do get hives, ezcema and other unexplained rashes on my body. My face would have told that nurse exactly how stupid she sounded, I'm good at facial expression LOL:laugh:
07-23-2009, 06:37 AM
I don't really have the "butterfly", but more so almost my entire face gets red. Is that considered the malar rash? It comes and goes for many different reasons.
07-23-2009, 08:18 AM
Thanks for all the responses! I thought I remembered reading that about half get the rash/half don't. Why can one person's bad reaction make you doubt yourself?? :P
Hopefully I won't be back at the hospital anytime soon to see her again but will make sure I'm prepared with a good comeback next time. lol
ISDM, thanks for asking...the surgery went fine. Recovery hasn't been bad. I had to get my gallbladder removed (damaged from lyme disease). I told a friend that the ONE positive thing about living with a lot of pain on a regular basis is that it makes pain from surgery seem like a breeze.
I have never had a malar rash on my face.
did have rash on back of neck by hair line, and one on my chest under breast they said was due to the lupus rash. but haven't had them in over a year now.
hope this helps you.:laugh:
07-23-2009, 11:43 AM
Thats right Ang...
And also one less thing to worry about too
take it easy
07-24-2009, 02:03 AM
Yeah i dont have the malar rash either.
I have excema, and i do get reaction rashes from certain products, but never the butterfly rash.
07-25-2009, 01:33 PM
Ang, that nurse is all wet. According to "The Lupus Book" by Dr. Daniel Wallace, the widely acknowledged expert on lupus, only 35% of lupus patients get the butterfly rash. I don't get it either, in fact I don't even have trouble with the sun, but there are blood test results and other reasons my doctor suspects lupus, along with Sjogren's Syndrome. That nurse shouldn't speak of things she knows nothing about.
07-25-2009, 05:32 PM
i don't have the butterfly rash and so far (knock on wood) have never had any skin involvement... just joints, eyes, Raynaud's...
07-25-2009, 10:32 PM
Me either, skin problems.... but not malar.
07-25-2009, 10:34 PM
There are a list of symptoms for Lupus and just because you don't have all of them doesn't mean you don't have Lupus. I do get the butterfly rash but it doesn't stay on my face for long periods of time. I comes out if I have been in the sun too long. I also get a rash on my chest. The problem is people are not educated enough on this disease. I am a nurse myself and to be honest if I didn't have Lupus I wouldn't know as much as I do about it.
07-26-2009, 08:39 AM
We just had new carpeting installed yesterday, so the house was a mess and two men were working from 8:30 a.m. 'til 9:30 p.m. - the racket was deafening. It was so stressful for me that I had to leave and go shopping for a while. Sure enough, when I glanced in a mirror, there was the rash flaring up bright red on my cheeks!
A rash was one of my earliest symptoms, but not on my face at first. I started with a rash on both sides of my neck. Has anybody watched Star Trek - Deep Space 9? There was a character on there named Jadzia Dax. The alien race called Trills that she came from had spots that started on both sides of their necks, and tantalizingly, were said to continue down both sides of their bodies. My husband was smitten with her. He even named his cat Dax. When I was disgusted that I couldn't seem to get rid of that rash, he just said (in his bedroom voice) "Mmmm, lucky me, my wife is turning into a Trill."
After that, I started to get the true malar rash on my face. I've noticed for several years that if I'm stressed out, the rash gets bright red. I think that the rash was the reason that my PCP first suspected Lupus and sent me off on my journey of getting the correct diagnosis of Mixed Connective Tissue Disease. It has taken three years!
(Who is really a Trill from a far-off planet)
07-28-2009, 12:13 PM
I don't have the official butterfly...my cheeks get rosy(my whole life) and next to my nose is actually blanched looking(whitish) ..I guess I have the "reverse butterfly"...lol
p.s. that nurse is an idiot..just backs up my theory that people who don't have it..don't understand it:nah:
07-28-2009, 03:19 PM
What Oluwa said sums it up!!!!!! :-)
I have never had the malar rash. I also suffer from other skin conditions but not that one.
08-06-2009, 08:08 AM
That silly nurse was obviously unaware that there are different forms of Lupus. :nah:
I get a rash over the bridge of my nose, and up closer to my eyes, but it does not spead to my cheeks. It is very small, and my glasses obscure most of it. Heat and sun make it worse! I have extremely oily skin, which I postulate keeps many rashes away! (I'm 56 and still have oily skin! I never thought I would ever use Clearasil AND Miss Clairol at the same time!:wacko:)
08-09-2009, 08:02 AM
I do not have an official diagnosis, but have a faint rash on my cheeks and nose that is becoming more and more noticable... thankfully I have freckles and it is somewhat camoflaged.
It is definately more noticable some days than others.
What I notice more are discoid spots on my collarbone and chest.
08-19-2009, 09:36 AM
Although I've developed bilateral rashes on my legs and arms, thus far, I'm butterfly free!
08-27-2009, 06:17 PM
I only get the butterfly when I run, and it usually only lasts several minutes. I agree with Pandagirl that those without lupus don't understand. Many doctors even believe that it's all psychological. :grumpy:
If that's what it is, then maby a broken arm is psychological too.
08-31-2009, 08:42 PM
I just posted "lupus or fibromyalgia" in Laura lounge...and the rheumy said to only come back and see him early if I develop a butterfly rash or sores in my mouth...I've never had those symptoms...but I do get an flamed red rash on my thigh. (hot to touch)..which spreads accross my buttocks to my other thigh...never on my face. This usually comes with a fever and extreme body aches. So no I don't think everyone with lupus gets the butterfly rash...infact I recently read something that said only 40% of people with lupus get the butterfly rash.
08-31-2009, 09:02 PM
I have it! It's not raised or bright, but it looks like I have spent the day in the sun, which I never do anymore, not since last year!
I've had it for about 4 months now..
09-01-2009, 12:25 PM
I get it. and Im pretty sure mine pops up when I get stressed. Becuz I've woken up everyday since school started with bright pink cheeks. And it hasnt really gone away much in the past 2 weeks. its really annoying.
09-11-2009, 04:57 PM
Stress makes mine pop up like, lets say roses, ha ha!
09-11-2009, 05:19 PM
i too do not have the rash on my face but other skin problems. Next time tell her that is why she is a nurse and the doctor is the doctor. Bonita
09-27-2009, 09:59 AM
My sister did not have the Butterfly rash, nothing on her face, instead she has very red damaged looking skin on her chest area, she just assumed it was age and sun damage, but the doctor who diagnosed her with Lupus said that IS her rash. But shes had other doctors day otherwise, but no she did not have a Butterfly rash on her face, and her chest skin is just very red and looks sun damaged.
09-27-2009, 01:05 PM
My butterfly rash only pops up occasionally. Stress/exhaustion seems to bring it on, also exposure to sunlight. Sometimes it's faint, and sometimes bright red.