Overview
Lichen amyloidosis (also called lichen amyloid or primary localized cutaneous amyloidosis, lichen type) is a skin condition where a protein called amyloid builds up in the outer layer of the skin. This buildup causes small, firm, very itchy bumps to form, most often on the shins and lower legs, though they can also appear on the arms, thighs, and back. The bumps are usually brownish or skin-colored and may join together to form rough, scaly patches over time. The condition is not life-threatening and does not spread to internal organs, which sets it apart from more serious forms of amyloidosis. The most troublesome symptom for most people is intense, persistent itching that can seriously affect sleep and quality of life. Scratching makes the skin thicker and darker over time, a process called lichenification. The exact cause is not fully understood, but repeated rubbing or scratching of the skin is thought to play a major role. Some cases run in families, suggesting a genetic link. Treatment focuses on relieving itch and improving the appearance of the skin. Options include strong steroid creams, antihistamines, moisturizers, and in some cases laser therapy or other procedures. There is currently no cure, but symptoms can often be managed well with the right care plan. Working with a dermatologist is the most important step after diagnosis.
Also known as:
Key symptoms:
Intense, persistent itching on the skinSmall, firm, raised bumps on the shins or lower legsBrownish or grayish skin discoloration in affected areasRough, scaly, or thickened skin patchesBumps that may merge into larger rough areasWorsening itch at night or after sweatingSkin darkening from repeated scratchingDiscomfort or burning sensation in affected skinBumps that may also appear on the arms, thighs, or upper back
Clinical phenotype terms (2)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventKoite Health Oy — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Lichen amyloidosis.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Lichen amyloidosis.
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How certain are you that this is lichen amyloidosis, and do I need a skin biopsy to confirm it?,What treatment do you recommend first, and how long before I should expect to see improvement?,Are there any triggers I should avoid to prevent my symptoms from getting worse?,Should other members of my family be tested or examined, since some cases run in families?,What are my options if the first treatment does not work well enough?,Is there any risk that this condition could affect my internal organs in the future?,Are there any clinical trials or newer treatments I should know about?
Common questions about Lichen amyloidosis
What is Lichen amyloidosis?
Lichen amyloidosis (also called lichen amyloid or primary localized cutaneous amyloidosis, lichen type) is a skin condition where a protein called amyloid builds up in the outer layer of the skin. This buildup causes small, firm, very itchy bumps to form, most often on the shins and lower legs, though they can also appear on the arms, thighs, and back. The bumps are usually brownish or skin-colored and may join together to form rough, scaly patches over time. The condition is not life-threatening and does not spread to internal organs, which sets it apart from more serious forms of amyloidosis
At what age does Lichen amyloidosis typically begin?
Typical onset of Lichen amyloidosis is adult. Age of onset can vary across affected individuals.
Which specialists treat Lichen amyloidosis?
3 specialists and care centers treating Lichen amyloidosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.