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Welcome to Patient Empowerment Pulse: Your Guide to Becoming Your Own Best Advocate

  Check out our storefront for self-advocacy tools and consultations. Or leave us a tip to show your support. Welcome to Patient Empowerment Pulse: Real-Life Wisdom from a Professional Patient Who I Am Welcome to Patient Empowerment Pulse, a blog built on the hard-won wisdom of someone who’s lived both sides of the healthcare divide. I’m Joanna, and this is more than just a health blog—it’s a survival guide for anyone trying to navigate chronic illness, complicated care teams, and a medical system that often feels like it’s working against you. I didn’t set out to become a professional patient. I trained for a career in culinary arts. But life had other plans. Over the years, I was diagnosed with lupus, Sjögren’s syndrome, spondylitic arthritis, inflammatory-onset diabetes, and a growing list of related conditions. That’s when I discovered that all my professional training didn’t fully prepare me for what it means to actually live this every day. This blog is where I share the str...

Autoimmune Rashes: 7 Skin Clues Doctors Often Miss


If you live with lupus, Sjogren’s, rheumatoid arthritis, or another autoimmune condition, your skin may be the first place your body signals something is wrong. These early signs—often overlooked or misdiagnosed—can show up months or even years before a formal diagnosis.

This guide will help you recognize key autoimmune rash types, what doctors often miss, and how to advocate for testing and care. Whether you’re newly diagnosed or still searching for answers, learning how to read your skin can change everything.

1. Butterfly Rash (Lupus)

A malar or “butterfly” rash spreads across the cheeks and bridge of the nose. It tends to worsen with sun exposure, stress, or heat.

What doctors miss: Not every butterfly rash looks dramatic. Mild versions may appear as flushed or irritated skin and are easily mistaken for rosacea or sunburn.

2. Raynaud’s Phenomenon (Lupus, Scleroderma, MCTD)

If your fingers or toes turn white, blue, or red in response to cold or stress, this vascular symptom could indicate underlying autoimmune disease.

What doctors miss: Early Raynaud’s symptoms may be dismissed as anxiety, cold sensitivity, or poor circulation.

3. Livedo Reticularis (Lupus, APS)

This lace-like purple or red pattern on the skin—often on the legs—is a sign of impaired blood flow. It can be associated with lupus or antiphospholipid syndrome (APS).

What doctors miss: Livedo can be brushed off as a cosmetic issue or a normal reaction to cold. It’s rarely connected to clotting disorders early on.

4. Psoriasis & Psoriatic Arthritis Skin Changes

Thick, scaly plaques are classic in psoriasis, but psoriatic arthritis may present with subtle nail pitting, scalp irritation, or faint red patches.

What doctors miss: Mild psoriatic symptoms can go unnoticed—especially if there’s no known family history or joint pain has not yet started.

5. Dermatomyositis Rash (Rare, But Critical)

A purple-toned rash on the eyelids (heliotrope) or red scaly patches on knuckles (Gottron’s papules) may indicate dermatomyositis, a serious autoimmune muscle disease.

What doctors miss: These signs are rare and often misdiagnosed as eczema, allergic dermatitis, or contact irritation.

6. Chronic Hives (Autoimmune Urticaria)

Unexplained hives that last more than 6 weeks—especially if they’re recurring—can point to autoimmune thyroid disease, lupus, or Sjogren’s syndrome.

What doctors miss: Many providers assume ongoing hives are allergic, not autoimmune—especially if you don’t have known food triggers.

7. Post-Rash Pigment or Scarring

Does your skin scar, darken, or lighten easily after a flare or rash? Post-inflammatory pigment changes can be a sign of immune dysfunction, especially in skin of color.

What doctors miss: These effects are often seen as cosmetic or dismissed entirely, even though they can reflect ongoing inflammation.

Why These Clues Matter

Skin symptoms were one of my earliest autoimmune signs—long before I had a diagnosis. I had persistent redness on my cheeks, random outbreaks of hives, and weird color changes in my fingertips that nobody could explain. It took years before someone connected the dots. And I hear the same story from other patients all the time.

One reader wrote to me about how her "eczema" turned out to be cutaneous lupus. Another described her daughter’s persistent hives, misdiagnosed as food allergies, that were eventually traced back to Hashimoto’s thyroiditis. These stories aren’t rare—they’re just rarely connected early.

The truth is, your skin isn’t just cosmetic—it’s a window into your immune health. Autoimmune diseases don’t always start with obvious joint pain or fatigue. Sometimes they whisper through the skin first.

If you notice unusual, persistent, or evolving skin changes, bring them up with your provider—especially if you have other unexplained symptoms like fatigue, joint pain, or unusual labs.

Talk to Your Doctor

If you’re experiencing any of these skin changes—especially in combination with other symptoms—bring them up with your healthcare provider. Dermatological clues can offer powerful insight, but only if your doctor knows to look for them.

You may need to advocate for yourself by asking for:

  • Rheumatology or dermatology referrals

  • Photos and documentation in your chart

  • Repeat labs or ANA testing if symptoms persist

That’s not overreacting. That’s advocating.

Advocating for Yourself

One thing that almost always helps—at least to some degree—is giving your skin some gentle support. Two basics I keep on hand during any flare that affects my skin: CeraVe Healing Ointment, which helps lock in moisture and support the skin barrier, and La Roche-Posay Anthelios Sunscreen, a broad-spectrum SPF that doesn’t sting sensitive skin. If your rashes get worse with sun or heat, sun protection is a must.

  • Document your rashes with clear photos taken in natural light. A full-spectrum sunlight lamp can help you capture more accurate color and contrast, especially in low-light homes or winter months.

  • Track patterns (do they worsen with sun, stress, or weather changes?).

  • Push for referrals to rheumatology and dermatology if your skin changes go unexplained.

Looking for more autoimmune advocacy tips? Visit our Ko-fi shop for symptom trackers, flare logs, and diagnostic support tools made for patients, by patients.


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