Sarcoidosis

Overview

Sarcoidosis most often affects the lungs and lymph nodes, but can involve the skin, eyes, and heart.

Many cases go away in 2 to 5 years without treatment.

Symptoms

Common signs:

• Cough or shortness of breath
• Tender red lumps on the shins

Less common

• Tiredness
• Rash
• Red bumps on shins
• Eye redness

Look up a symptom: Cough · Fatigue · Painful red eye with light sensitivity · Tender red lumps on the shins

When to get medical care

Causes

Immune.

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

• Black women

Diagnosis

Chest imaging.

Tests

Tests, if needed:

• Chest X-ray:

Treatment

Follow up.

Self-care

• Get yearly eye exams
• Don't smoke

Medicines

Medicines that may help:

OwieClear doesn't give doses: follow the label or your healthcare professional. Medicine names here are examples, not a full list.

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

• Keep a simple diary of symptoms, triggers, and medicines to bring to visits.
• Bring a list of your medicines and questions to each visit.
• Stay active in ways that feel good to you.
• Get enough sleep and manage stress.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Support groups and helplines

• American Lung Association: Lung HelpLine 1-800-586-4872 and Better Breathers support groups.
• 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.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.

Children, pregnancy, and older adults

• Black women: More common and more severe.

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.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Often improves.

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

• Which organs are affected?

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 Sarcoidosis