Life with lupus can mean a whole lot of symptoms, including skin symptoms. We asked MyLupusTeam members to tell us about their skin symptoms. Eight in 10 members reported experiencing a rash at some point. Nearly two-thirds (62 percent) have experienced the “butterfly” rash and one-third have experienced the “disk-shaped” discoid rash. Members who are affected by rashes also told us they experience skin redness, sensitivity to light, itchiness, hair loss, and changes in skin color.
Sixty-two percent of survey respondents said they’ve experienced a malar, or butterfly, rash. A butterfly rash typically occurs on the face and covers the cheeks and top of the nose. Some MyLupusTeam members describe the rash as “burning” or feeling “like you’re on fire.”
“My rash always makes my cheeks feel like they’re inflamed and sore!” a member commented. Another member added, “It feels scaly, burning, and itchy like a bad rug.” Among those who said they experienced rashes, 76 percent said they experienced itchiness.
A discoid, or disk-shaped, rash affected 33 percent of survey respondents. These thick, scaly rashes usually occur on the face and scalp but may develop elsewhere. These rashes can cause scarring and changes to skin color. Scarring, when it affects the scalp, can cause hair loss. Of the survey participants who experience rashes, 57 percent experienced hair loss and 49 percent experienced changes in their skin color.
“I get discoid lupus on my lips and face and occasionally on my eyelid,” one member shared. “My scalp is badly scarred, and I have noticeable bald patches,” another member added.