SAPHO syndrome

Overview

SAPHO stands for synovitis, acne, pustulosis, hyperostosis, and osteitis.

Chest wall pain near the collarbone is common.

Symptoms

Common signs:

• Chest wall bone pain

Less common

• Skin pustules
• Joint pain

Look up a symptom: Pain in many joints · Pimples, blackheads, or whiteheads

When to get medical care

Causes

Inflammation.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• Children and young adults: Most common ages
• People with severe acne or palm and sole pustules: Higher risk

Possible complications

• Long-lasting pain: Bone and joint pain can last years

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Imaging:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Gentle exercise
• Skin care for pustules
• Stay active

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a rheumatologist (joint and immune system doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• Young and middle-aged adults: Most common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Symptoms can be controlled.

Most live well with treatment.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• Which treatment fits me?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on SAPHO syndrome