Sarcoidosis and your skin: Tips for managing

If you have sarcoidosis on your skin, it’s likely that’s one of the first places it will appear. Because this disease can afflict other organs, such as your lungs, eyes, or liver, dermatologists offer the following advice to their patients who have sarcoidosis on the skin:

1. Keep all appointments for check-ups. Everyone who has sarcoidosis should have check-ups. Even if the sarcoidosis on your skin is mild and doesn’t require treatment, check-ups are important. Sometimes, sarcoidosis develops in another organ without causing any symptoms.

When you find sarcoidosis inside the body early and treat it, you may be able to prevent a serious problem.

2. Record your symptoms, so you can discuss them with your doctor during your next check-up. Some people have symptoms when sarcoidosis develops in another part of their body.

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 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 doctor about them.

   

   You’ll want to tell your doctor about any and all symptoms, even if the symptoms seem unrelated.

Signs and symptoms to watch for include:

   • Eye problems: Blurry 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
   • Lung problems: Coughing or difficulty breathing
   • Nerve problems: Bell’s palsy (one half of your face droops) or pain when moving a certain way
   • Other problems: Unexplained weight loss, fever, feeling tired all the time, joint pain, stiffness, or night sweats

3. Get your eye exams and lungs tests as recommended. Sarcoidosis often develops 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 inflammation in the lungs.

4. Treat your skin as directed, and if treatment does not work, tell your dermatologist. When sarcoidosis causes a skin condition, treatment may not be necessary. Many of these skin problems go away on their own without leaving a trace.

Dermatologists recommend treating the skin when sarcoidosis can permanently damage the skin or causes symptoms such as intense pain or itch.

5. 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.

6. Avoid anything that can irritate your lungs. Dust, chemicals, fumes, gases, and secondhand smoke can harm your lungs.

7. Live a healthy lifestyle. Eating a healthy diet, exercising, and not smoking can improve your overall health. That’s important for everyone, and especially important when you have a long-term disease.

8. Talk with others who have sarcoidosis. Finding out that you have a long-term disease that can be serious or even life-threatening can be difficult. Joining a support group can help. You can talk with others who have similar challenges and learn how they cope.

You can find online and in-person support groups for sarcoidosis on the Foundation for Sarcoidosis Research’s website at, Find a support group.

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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.

Haimovic A, Sanchez M, et al. “Sarcoidosis: A comprehensive review and update for the dermatologist. Part II. Extracutaneous disease.” J Am Acad Dermatol 2012; 66:719.e1-10.