Try a dermatologist or s second opinion but yes Lupus can only effect the skin. Below is information that could help you understand more.


Cutaneous Lupus Erythematosus

Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

I have known doctors who think that the diagnosis is dependent on the results of the ANA, which it is not. If you would google some good websites about lupus you will find the criteria for diagnosis. The ANA only shows positive in about 66% of cases, and sometimes it's on again and off again in the same person. Educate your doctor or change doctors.

The sores, yes, especially in the winter when the heat is on in the house and it is drying. I use a humidifier, and saline solution, and I found a nasal spray now with xylitol that works pretty well to keep skin and membranes moisturized.

These symptoms can also be present in Systemic Lupus Erythematosis, so don't think those symptoms limit you to a dx of cutaneous.

Yes.....I have the sores in my mouth , nose , and scalp with the Lupus flares ! I try to wash my hair daily during the flares, that seems to help the scalp sores,........... and for the mouth sores I put a spoonful of liquid Benadryl in my mouth and hold it a few minutes and then spit it out.....and then I put a spoonful of liquid Maalox in my mouth and hold it a few minutes and then spit it out......it is very soothing and the sores heal faster ! I only have to do this a couple of times for a day or 2 and it helps me ! Just plain saline nose spray might help your nose sores too............. Hope this is helpful to you :)

I've had systemic lupus for 10 yrs. In all that time, I've never had a problem w/ nose sores until late July of this year. My rheumy told me it sometimes happens during a flare. Told me to use antibiotic cream to prevent infection. I tried that.... but last month, I was at a point where I couldn't sleep at night due to the congestion. Apparently, the lingering sores had caused a sinus infection & my primary doctor prescribed a z-pack & told me to take Zyrtec. It helped me to breath a little better but nose sores were still there. Earlier this week, I went to my eye doctor b/c of pink eye in my right eye. My right nostril was also the most swollen & infected. Eye doc put me on an antibiotic/steroid eye drop & suggested I ask my primary care doctor to consider another round of antibiotics to help the sinus/nasal infection. I asked & she prescribed doxycycline mono. I'm in the middle of the treatment but have already noticed a lot of improvement with the congestion & sores. My lesson from this is that if the sores linger too long, they can cause problems in other areas.

yep...especially scalp and back of neck ..and mouth :(:(:(
sorry Angie that you arent able to take any meds for help ..do you see a rheuamtologist ? thats odd that he or she doesnt want to help with meds ..especailly as agressive as these diseases are ...goodluck to you .

I used to get them alot. Mostly in the mouth, but sometimes in the nose as well. I didn't notice them on my scalp, but my scalp was very tender and had lots of sore spots. It would even hurt to tie my hair back.

Strong chamomile tea is very snoothing and has anti-inflammatory, antiviral and antibacterial properties.

I have been diagnosed with Lupus, but I find that the sores in my mouth, nose and nose are more because of Sjogren's syndrome. I use bactroban for my nose, a mixture of Synalar gel & andolex gel helps with inflammation in the mouth, to deaden the mouth ulcers I use Dequadin mouth paint & Kenalog orabase. it forms a barrier over the ulcer. Hope you can get this medication where you live. It has helped me a lot.

So sorry to hear about these ever lasting annoying sores ! I've also have a problem with them in and on / around my mouth and in my nose.
~ I HAVE FOUND A MEDICATION THAT WORKS ! ~
Went to a ENT a surgeon my 7 yr old had to have his tonsils and ads removed and I talked to him about this he then tells me that his self and another Doc. found that this med , only by script works like a miracle wounder drug ! FOR EXTERNAL USE ONLY and can be used in your nose actually works in just a few uses I put it on 2 or 3 x a day and within 2 days the sores go away

IT's a cream called ~ Fluocinonide Cream USP,0.05 % RX only

He said it has a steroid in it so maybe thats why it works I'm not sure ..I'm just thankful I mentioned it and he wrote me a few tubes of it. I no longer suffer weeks with these nasty sores !

mommies4 , very good to know ..thank you for sharing

i have them now they are called s.l.e plaques they are very saw i ahve them on my face,in my hair i got told they wouldnt treat them they are scaring aswell makes me feel so horrible

cazwhit ...giving you a hug ...hope you feel better soon

thank you

As far as the sores on my scalp and in mouth I use oregano oil just a few drops in my mouth daily and within a few days they magically disappear but if I stop daily use they do come back .

I have been dealing with Lupus for the last 4 years and the nose and lip sores for years. In fact I have a huge nose sore right now. Not sure what causes them but man they hurt!!! I Took almost 4 years to get an actual Lupus diagnosis. Was diagnosed with everything from mixed connective tissue disorder to rhuematoid arthritis to finally Lupus. My ANA number is off the charts though. I too am not sure what to do for these nasty sores but I wanted you to know you are not alone!! Hugs to you!
Michelle