Sarcoidosis and your skin: Tips for managing

Dermatologists offer the following advice to their patients who have sarcoidosis on their skin:

1. Keep all appointments with your dermatologist. Even if you have sarcoidosis on your skin that doesn’t need treatment, check-ups are important. Sarcoidosis can develop inside the body. Finding and treating sarcoidosis in other areas early can prevent a serious problem.

2. Pay attention to symptoms, so you can discuss them with your dermatologist during your next check-up. When sarcoidosis develops in another part of their body, some people have symptoms like difficulty breathing or an abnormal heartbeat.

If you notice any symptoms, keep track of them. A cell phone can be a great tool for capturing your signs and symptoms. You can use a notebook app to type in signs and symptoms as you experience them or use the phone’s voice recorder.

   Record your symptoms

   Using your cell phone to keep track of your signs and symptoms will help you remember to tell your dermatologist about them.

   

   You’ll want to tell your dermatologist about all symptoms, even if the symptoms seem unrelated.
   
   Signs and symptoms to watch for include:

   • Eye problems: Blurry vision, double vision, problem seeing colors, bloodshot eyes, sensitivity to light, or eye pain
   • Heart problems: Dizziness, shortness of breath, swelling in your lower legs, chest pains, fluttering or racing heart, or fainting
   • Kidney problems: Sharp pain in your side, back, or both; pain or burning when you urinate
   • Lung problems: Coughing or difficulty breathing
   • Nerve problems: Bell’s palsy (one half of your face droops), pain when moving a certain way, numbness, tingling, or drop foot (difficulty lifting the top part of your foot)
   • Other problems: Unexplained weight loss, fever, feeling tired all the time, joint pain, stiffness, or night sweats

3. See the doctors that your dermatologist recommends. If your dermatologist recommends seeing your primary care doctor or refers you to a specialist, follow up. If sarcoidosis has developed in another organ, treatment can improve your quality of life. Early diagnosis and treatment may prevent it from worsening.

4. Get your eye exams and lungs tests as recommended. Sarcoidosis can develop in the lungs or eyes. When the sarcoidosis appears in one of these places, you may not have symptoms.

An eye exam can find signs of sarcoidosis before it affects your eyesight. Catching this early and treating it can prevent permanent eye damage and loss of eyesight.

Chest x-rays and testing that measures how well your lungs work can find out whether the disease affects your lungs. Treatment can reduce the effect it has on your lungs.

5. If your dermatologist prescribes treatment, treat your skin as directed. When treatment is needed, be sure to follow your treatment plan and tell your dermatologist if:

   • Treatment doesn't work.
   • You keep getting sarcoidosis in the same place. You might have an allergy.
   • You think you're experiencing a side effect from treatment.

6. Avoid anything that can irritate your lungs. It’s common for sarcoidosis to develop in the lungs. Avoid anything that irritates your lungs like dust, chemicals, fumes, gases, secondhand smoke, and smoking. Anything that irritates your lungs could cause sarcoidosis to develop in your lungs.

   If you smoke, quit

   Smoking increases your risk of developing sarcoidosis in your lungs. And if you have sarcoidosis in your lungs, smoking can worsen symptoms like breathlessness and increase your risk of developing other lung diseases like bronchitis or emphysema.

   

7. Live a healthy lifestyle. Eating a healthy diet, exercising, and not smoking can improve your overall health.

8. Talk with others who have sarcoidosis. Connecting with others who have sarcoidosis can feel like a lifeline. You can meet people who have similar challenges and learn how they cope. You can get support when you’re feeling down.

You’ll find support groups and chat forums online. To get the most benefit from these:

   • Stay away from online forums that are filled with negative talk.
   • Avoid sharing private health information online, especially with people who don’t log in and share their name.
   • Consider who’s giving medical advice. A board-certified dermatologist or other medical doctor is a trusted source.

When sarcoidosis develops on the skin, it can have a serious impact on your health and well-being. Partner with a board-certified dermatologist — an FAAD — for expert care. No one understands your skin better.

Images
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References
Haimovic A, Sanchez M, et al. “Sarcoidosis: A comprehensive review and update for the dermatologist:

Part I. Cutaneous disease.” J Am Acad Dermatol. 2012; 66:699.e1-18.

Part II. Extracutaneous disease.” J Am Acad Dermatol 2012; 66:719.e1-10.

Vivehanantha S, Thompson D, et al. “P8673: Contact allergy exacerbating primary cutaneous sarcoidosis.” J Am Acad Dermatol 2014;70(5):AB67. Commercial support: None identified.

Written by:
Paula Ludmann, MS

Reviewed by:
Arturo R. Dominguez, MD, FAAD
Neelam Khan, MD, FAAD
Ivy Lee, MD, FAAD

Last updated: 3/24/23