Patient Education – Sarcoidosis
What It Is
Sarcoidosis is a condition where small clumps of inflammatory cells, called granulomas, form in different parts of your body, often your lungs and lymph nodes. These clumps can cause organs to not work properly.
Causes and Risk Factors
Doctors don’t know the exact cause. It may be due to your immune system reacting to something, like germs or chemicals, but this isn’t certain.
Risk factors include:
Age between 20 and 40 years old
Being African American or Northern European descent
Family history of sarcoidosis
Exposure to certain dust, chemicals, or infections
Signs and Symptoms
Symptoms can come and go, and many people have no symptoms early on. When symptoms appear, they can include:
Fatigue or feeling tired
Shortness of breath or cough
Chest pain
Swollen lymph nodes (especially in neck or armpits)
Skin rashes or sores
Eye redness or vision problems
Joint pain or swelling
Fever or weight loss
Complications If Untreated or Noncompliant
Lung scarring (fibrosis) causing long-term breathing problems
Eye damage, sometimes causing vision loss
Heart problems such as irregular heartbeat
Kidney problems
Nervous system issues
Severe fatigue and decreased quality of life
Treatment and Self-Care Measures
Not everyone needs treatment. If your symptoms are mild or improving, your doctor may just watch you closely.
When treated, options include:
Corticosteroids (like prednisone) to reduce inflammation
Immune-suppressing medicines if steroids don’t work or can’t be used long-term
Eye drops or ointments for eye inflammation
Medicines to control symptoms like cough or pain
Self-care tips:
Rest when tired
Avoid smoke, dust, and strong chemicals
Keep follow-up doctor visits to monitor your condition
Report any new symptoms right away
Common Types of Medications
Corticosteroids: reduce inflammation (side effects: weight gain, mood changes, higher blood sugar)
Methotrexate or Azathioprine: immune suppressants (side effects: low blood counts, risk of infection)
Eye drops: reduce eye inflammation (side effects usually mild)
Pain relievers: for joint pain (side effects depend on medication)
Dietary Needs
No special diet, but eat balanced meals with plenty of fruits and vegetables
Limit salt if you are on steroids to help reduce swelling
Stay hydrated
Avoid excessive caffeine or alcohol
Lifestyle Changes
Avoid smoking and secondhand smoke
Avoid places with dust, mold, or chemicals that can irritate your lungs
Manage stress and get enough sleep
Exercise gently as tolerated
Safety Considerations
Take medications exactly as prescribed
Have regular eye exams to catch problems early
Watch for side effects of medicines and report them
Keep all doctor appointments for monitoring lung, heart, and kidney function
Prevention and Maintenance Tips
No way to prevent sarcoidosis but controlling symptoms and avoiding lung irritants can reduce flare-ups
Stay up to date on vaccines to prevent infections
Early treatment of infections to avoid worsening lung problems
Monitor symptoms and report new or worsening problems promptly
When to Call for Help
Call your Home Health Agency or Doctor if you have:
New or worsening shortness of breath or cough
Eye redness, pain, or vision changes
Swelling or pain in your joints
Fever lasting more than 3 days
New skin rash or sores
Unusual fatigue or weakness
Side effects from medications like mood changes or swelling
Go to the Emergency Room or Call 911 if you have:
Severe difficulty breathing or choking feeling
Sudden chest pain or fast irregular heartbeat
Severe vision loss or eye pain
Confusion or fainting
Severe swelling of face or throat
Sudden weakness or numbness on one side of the body
© 2025 Judith Regan / K.N.O.W. – Knowledge for Nurturing Optimal Well-Being. All rights reserved. | Educational use only | Not a substitute for medical advice | In emergencies call 911
Patient Homework / Assessment
Instructions: Choose True or False for each statement. Correct any false ones.
True or False: Sarcoidosis causes small clumps of inflammatory cells called granulomas.
True or False: Sarcoidosis always causes severe symptoms.
True or False: Smoking can make sarcoidosis symptoms worse.
True or False: Corticosteroids are often used to treat sarcoidosis.
True or False: Sarcoidosis can affect your eyes and cause vision problems.
True or False: There is a known exact cause of sarcoidosis.
True or False: A family history of sarcoidosis can increase your risk.
True or False: You should stop taking your medication when you start feeling better without talking to your doctor.
True or False: Fatigue is a common symptom of sarcoidosis.
True or False: Sarcoidosis can cause lung scarring if untreated.
True or False: Drinking plenty of fluids is important to help your body.
True or False: Exercise should be avoided completely if you have sarcoidosis.
True or False: Eye exams are important for people with sarcoidosis.
True or False: Joint pain is never related to sarcoidosis.
True or False: Sarcoidosis can affect your heart.
True or False: You should avoid dust, smoke, and chemicals to help reduce symptoms.
True or False: Sarcoidosis is contagious.
True or False: It is important to have regular follow-ups to monitor your disease.
True or False: Sarcoidosis always requires immediate hospital treatment.
True or False: Reporting new symptoms early can help prevent complications.
Individualized Questions for Patients
What parts of your body are affected by sarcoidosis?
What medications have you been prescribed?
Have you noticed any new or worsening symptoms lately?
How often do you have follow-up visits with your healthcare provider?
Do you have any side effects from your medications?
Have you had an eye exam recently?
Are you avoiding smoking or places with irritants?
What is your usual energy level, and has it changed?
Do you have any trouble breathing or coughing?
How do you manage fatigue and joint pain?