Three-quarters of MyLupusTeam members report experiencing skin symptoms as a result of their lupus. MyLupusTeam conducted a survey with 308 members diagnosed with lupus, including either systemic lupus erythematosus (SLE) or cutaneous forms of lupus (lupus that affects the skin).

Most people with lupus have SLE. SLE is also commonly referred to as lupus. This type of lupus can affect the joints, lungs, kidneys, blood vessels, and skin. Cutaneous lupus affects the skin as opposed to the entire body. Many people with SLE will also experience skin symptoms.

The MyLupusTeam survey found the top three skin symptoms were the same for people with SLE and cutaneous lupus. The top three symptoms for these groups are:

1. Itching
2. Redness
3. Sensitivity to light

MyLupusTeam is committed to sharing members’ experiences with the MyLupusTeam community. Here’s what members said about their skin symptoms.

1. Itching

Itching was the top skin symptom reported by members with either SLE or cutaneous lupus. Among people with SLE, 83 percent said they experience itching. Among members with cutaneous lupus, 85 percent reported itching.

“By the end of the day my skin feels like I have ants crawling under it, and I am constantly itching on various parts of my body. Has anyone experienced this?” one MyLupusTeam member asked the community.

Several members shared similar experiences. “I can definitely relate to you,” one replied. “Today was one of those days where I was itching all over most of the day.”

2. Skin Redness

Redness was the second most common skin symptom for members with SLE — 77 percent — and members with cutaneous lupus — 79 percent.

“I experience redness and blister rashes while in the sun. I currently have redness and rashes on both arms and legs due to being in the sun and heat,” one MyLupusTeam member commented.

Another member asked for advice to reduce redness: “Is there any way, other than by getting rest, to alleviate redness and acne during a flare? My birthday is in three days, and I am feeling very self-conscious.”

3. Sensitivity to Light

Seventy-two percent of survey respondents with SLE and 68 percent of respondents with cutaneous lupus reported sensitivity to light.

“I usually get a butterfly rash if I’m in the sun for a little too long,” a MyLupusTeam member wrote. “I try to cover myself up as much as I can, and I also use sunblock.”

“The sunlight is definitely not my friend, which is hard to deal with when living in Texas. I just try to avoid the sun as much as I can by using hats or umbrellas,” another member commented.

4. Sensitivity to Temperature and Hair Loss

Sensitivity to temperature was the fourth most commonly reported symptom for people with SLE — 70 percent. For those with cutaneous lupus, hair loss was the fourth most common — 61 percent.

“Does anyone else have a red face, especially cheeks, and feel hot all the time in absence of fever? The heat makes me sick,” one member shared. Another added, “Heat of any kind makes my face start to burn as well. I always need to have a fan pointed at me.”

5. Hair Loss and Scarring

Hair loss was the fifth most commonly reported symptom for those with SLE — 57 percent of those with SLE reported hair loss. The fifth most common symptom for those with cutaneous lupus was scarring, reported by 60 percent.

Hair loss and scarring are both symptoms that affect how members feel about themselves. One member who’s experienced both shared, “I now have two bald spots on my head. I have been losing my hair since being diagnosed with lupus. Looks like it’s a permanent loss, as I was told my scalp is scarred. This is really hard for me as my hair was the only beautiful part of me physically.”

Find Your Team

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 214,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Which skin symptoms affect you the most? What do you do to protect your skin and stay comfortable? Share your experience in the comments below, or start a conversation by posting on your Activities page.