Butterfly rashes?

Seenie here from Moderator support, asking a question for a friend. (Yes, really!)

I have a friend who has been miserably ill for years, and who is finally going to see a rheumatologist. What she has looks a lot like Lupus, and the blood work that the rheumatologist has requested appears to be looking for Lupus.

She seems to have all the right symptoms, except she’s never had the rash. Does Lupus always come with the butterfly rash?


I havent had the butterfly rash but i have SLE. I think it is discoid lupus that can causes a rash. I have slight tinging on cheeks but nothing that i would call a butterfly rash. I hope your friend gets the results she needs so that she can get treated!


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So do I. She is in terrible pain, and saddled with crushing fatigue. It’s awful for her, and she has a PCP who has blown her off for years, except for being willing to prescribe Butrans patches. (How a doc can ethically prescribe narcotic patches for undiagnosed pain is beyond me.) After a full-body MRI showed something that looked like arthritis in many joints, she finally got a rheum referral.

I hope that she gets some answers. She’s very scared that she might have lupus. I’ve told her that there’s something worse than having lupus: having lupus and not being diagnosed.

Thanks, Kim7, for your help.


Hi :slight_smile:

Just to add another answer I don’t have the butterfly rash either but have SLE.

I tend to get dry skin and a rash on my hands and feet but not had the rash on my face thankfully. Again a get a slight ‘blush’ sometimes but that’s as far as it has gone to date.

I hope your friend is feeling better soon and gets some answers from her appointment. Fingers crossed :crossed_fingers: xxx

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Dear Seenie,

I hope your friend gets dx’ed.

Had a biopsy of small sore on lip = discoid lupus, never had a rash. When finally dx’ed had severe SLE, Sjogrens, autoimmune hepatitis, Renaud’s-ulk. I was ill for years. When I finally got medicated, I felt so much better and continued to work for 8 years.

That doctor sounds cruel.

I don’t get a traditional butterfly rash, but the skin on my face gets dry and flaky, and I have sle. I was not diagnosed based on the rash, more based on the unbearable pain, and overwhelming fatigue. To the point I couldn’t move or speak. I pray your friend gets diagnosed before it gets to that point! Prayers and blessings to you