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Scared to death

My beautiful baby girl (18) has the butterfly rash. It seems to appear everyday about the same time, in the same class. During the weekend it is less apparent but does appear from time to time. I have never seen the onset of the rash but I have witnessed the full fledged rash that covers both cheeks as well as the nose. My daughter feels the onset of facial heat and knows the rash is beginning. Her classmates are also familiar with the rash and tell her is is starting. She also has several other lupus symptoms that on their own could otherwise be explained away, but this rash seems to be the clincher. We are doing bloodwork but that is all the Dr. has suggested. What say you?
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Avatar universal
It's a really sickening feeling isn't it to wonder about something like this.  I know how you feel, my 16 year old son has lupus and when the lupus is active, the rash is there.  The rash that shows with lupus is very classic:  the face gets like a sunburn on the cheeks but the little lines that run down from either side of the nose to the corners of the mouth are normal color or even look a little white.  The name for these lines is "nasolabial folds".  

The sun can bring out the lupus rash but also fluorescent lights that are in most office and school buildings.  Your daughter must wear sunscreen if she is this sensitive.  Sun exposure and now even fluorescent and halogen lighting can trigger flares.  Lupus symptoms can be loss of appetite, constant fever (it can be just a low-grade fever not just a higher fever).  There is some weight loss, and unusual tiredness.  When my son starts to get sick he seems to start needing to sleep more and actually comes home from school or sports practice and falls asleep.  Some people also have problems with aching joints.

Have you looked at the list of criteria for a diagnosis of lupus.  Go to the LFA website for this.  

Lastly,  although many people say there are no specific "lupus tests", there are some that can be done that add a little more "weight" to a lupus diagnosis.  You have the right to ask your doctor to draw these:  CBC, urinalysis, C3, C4, anti-double-stranded dna, ana, Anti-Smith, CMP, sed. rate.  These are just some that we regularly draw and they are pretty specific for following our son's flares.  

Lupus is quite treatable if caught soon and aggressively treated if there is organ involvement.  Do not let your doctors "blow you off", be assertive as your daughter's advocate and do not settle for wait and see. You also should be seeing a rheumatologist.  It's amazing, but there are many doctors who are not at all familiar with lupus, its symptoms, treatment or diagnosis.  

Oh, and these labs I've listed above can be resulted out in 2-3 days.  Ask the doctor for your own copy and keep a file.  You will quickly learn how to decipher these results because the normal ranges are listed most of the time on the results sheet or on websites like webmd.com.

Good luck and God bless.  Hope you get the help you deserve!  Your daughter will be okay, just hang in there and insist on getting the answers you need.  
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484098 tn?1259527532
I was diagnosed with Lupus a few years ago.  The doc noticed my emotional ups and downs then noticed my butterfly rash, that truly just looked like blushing from anxiety.  I've had it since I turned 17  (I'm now 47).  The doc said, "I think you have Lupus."  Many blood tests later, I came up positive for 3 different types of blood tests for Lupus, and was sent to the Rheumatologist.  The Rheumatologist said "you don't have Lupus" and has refused to see me since then, stating it's a waste of my time and his.  Even tho I am in soooooo much pain at times it is too obvious I have Lupus.  I kept going to the doctors asking if they would please tell me IF I TRULY HAVE LUPUS.  Nobody would really answer me, yet when my daughter went to my doc for tests, she was given a lab slip for Lupus tests, and the reasoning that the doctor wrote on the slip was "Family history of SLE".  Since then, I just don't bother the docs with it anymore. The Rheumatologist that refused to see me can go to hell.  I can't get any others that insurance pays for.  I already know my symptoms and realize there isn't any help for them other than what I'm already doing (Methocarbomal and Celebrex and Darvon).  So, I'm not bothering with it anymore.  I don't worry any longer.  I just stay out of the sun, I apply sun screen every 2.5 hours (all sun screens wear off after 2 hours), and when I forget and spend a bit of time in the sun, I end up sleeping very soundly for the next 30 hours or so, and cannot wake up at all.  My daughter (19) was NEGATIVE FOR ALL LUPUS BLOOD TESTS, but has SOOOOO MANY of the symptoms.  I finally told her don't worry about the diagnosis.  Just get the doc to give you the meds for your symptoms and go from there.  We are very sure she has Lupus or some other Autoimmune disease.  I also have Sjogrens Syndrome, but mine is so mild I don't worry about it.  My daughter and I will just have to learn to enjoy what life allows us and be happy with that.  There are many millions of happy moments that do not include the sun.  And the pain is bearable most of the time with meds.  So, we're fine.  There's no changing this, it won't go away, and there's no cure.  So, we just live with the symptoms that the meds don't help and remember there are many in much worse shape.  OH!!! TAKE NOTE!!!  DO SOME RESEARCH ON MERCURY POISONING!!!  MERCURY POISONING CAUSES LUPUS SYMPTOMS!!!!!!  ANYONE EVER BROKEN ONE OF THE OLD MERCURY THERMOMETERS AND JUST "WIPED IT UP"?????  NOT A GOOD IDEA.  
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