dr-faqSarcoidosis FAQs

Source: Cleveland Clinic

Is there a cure for sarcoidosis?

There is no cure for sarcoidosis, but the disease may get better on its own over time or with drug therapy. Drug treatments are used to relieve symptoms, reduce the inflammation of the affected tissues, reduce the impact of granuloma development, and may prevent the development of lung fibrosis or other irreversible organ damage.

I recently was diagnosed with sarcoidosis. What is my outlook?

Most people with sarcoidosis live normal lives. About 60% of people with sarcoidosis recover on their own without any treatment, 30% have persistent disease that may or may not require treatment, and up to 10% with progressive long-standing disease have serious damage to organs or tissues that can be fatal. The rate of death from sarcoidosis historically has ranged from 1% to 5% in various studies but is likely closer to the low end of that range.

Is sarcoidosis a genetic disease? Will my children get it?

Within some individual families, the presence of sarcoidosis in a first- or second-degree relative has been shown to increase the chance of getting the disease by nearly five-fold. Multiple genes have been identified that affect the chances of getting sarcoidosis, and it is the combination of these genes that come together to influence susceptibility. Some of the genes will be passed to offspring, which likely accounts for a large proportion of the elevated risk in close relatives. Despite this, there is currently no screening test to identify who is at risk, and the likelihood of any given relative getting the disease is still so low that screening for sarcoidosis is not currently recommended.

Is sarcoidosis a type of cancer?

Sarcoidosis is not a form of cancer.

Can sarcoidosis develop into asthma or emphysema?

Although sarcoidosis commonly affects the lungs and can cause shortness of breath, wheezing, and cough, sarcoidosis does not cause emphysema nor does it develop into asthma.

Is sarcoidosis more common in certain areas in the United States?

Sarcoidosis appears to be more common in the South and Southeast, but why this is so remains unknown at the present time.

Can my family get sarcoidosis from me?

Sarcoidosis is not contagious so your friends and family members won’t catch the disease from you.

Is my skin rash from sarcoidosis contagious?

No. The rash cannot be passed to others through touch or other means.

Why does sarcoidosis affect African-Americans more often than other races or ethnic groups?

In addition to African-Americans—and African-American women in particular—sarcoidosis most commonly occurs in people of Scandinavian, German, Irish, and Puerto Rican descent. Genes are likely responsible for most of this phenomenon.

Will sarcoidosis affect my pregnancy?

Sarcoidosis itself should not interfere with your pregnancy or affect your unborn baby. Many women’s symptoms improve while they are pregnant because the body produces a higher level of its own corticosteroids. However, if the disease has caused significant organ damage, especially to the heart or lungs, it may be more difficult to successfully carry the baby to term and could be dangerous for both the mother and the baby. This issue should be discussed carefully with your doctor if you are contemplating pregnancy.

Do I need to alter my diet?

Not unless the sarcoidosis is causing high blood calcium levels. About 1 in 10 people with sarcoidosis do have high blood calcium levels. If this is the case for you, you’ll need to reduce your intake of calcium rich foods (such as dairy products, oranges, canned salmon with bones), vitamins containing calcium, and vitamin D. Excessive sun exposure (eg, sunbathing) should be avoided.

Will drinking alcoholic beverages affect my sarcoidosis?

Moderate social drinking has no effect on sarcoidosis.

Will sarcoidosis affect my sex life?

Rarely, sarcoidosis can affect the endocrine glands or the reproductive organs in a way that affects sex life. More often, sexual dysfunction is related to the presence of small fiber neuropathy or other factors like depression.

What are the side effects of treatment with corticosteroids?

Common side effects of corticosteroids include excessive weight gain, insomnia, acne, diabetes in susceptible people, high blood pressure, glaucoma, cataracts, osteoporosis, depression and emotional irritability, skin bruising, and increased risk of infections. Your doctor will discuss the side effects of corticosteroids and all drug treatments with you.

If I think I might have sarcoidosis, what should I look for in selecting a doctor or treatment center?

Because the signs and symptoms of sarcoidosis can resemble other diseases, the diagnosis of sarcoidosis can be difficult to make. Therefore, it would be wise to seek out a doctor and/or treatment center with a declared interest and expertise in sarcoidosis diagnosis and treatment. Also, because the disease can affect multiple organs, the treatment center selected should be capable of providing a comprehensive plan of care through a team of specialists. Finally, because the disease may disappear and reappear over a lifetime, the health care provider selected should be one that is committed to a lifetime of quality care and follow-up.

Where can I get more information?

Your doctor is the best resource for finding out important information related to your particular case. Not all patients with sarcoidosis are alike, and it is important that someone who knows you as a whole person evaluates your situation. Because sarcoidosis can affect different organ systems and can change over time, it is important for patients with sarcoidosis to see their doctors at regularly scheduled intervals. To help you find a doctor, see the FSR Physician Finder.

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