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“The Good News is You have Sarcoidosis!” Now What?


What does that mean? What will happen to me? Can it be cured? What do I do?

All these thoughts and more run through your mind when you are told that you've been diagnosed as having a disease called sarcoidosis. This monograph was written to help you understand some of the answers to these and other questions.

What is sarcoidosis?

Sarcoidosis is a common disease of unknown cause, which may involve every part of the body. Fortunately, most patients with sarcoidosis have no or only minor complaints. It is a disease that produces inflammation, usually in the form of bumps or discolored areas, which are technically called granulomas. These can occur anywhere in or on your body, including internal organs and externally on your skin. It is seen most frequently in the lungs by x-rays. Patients may have involvement of the skin, liver, lymph glands, spleen, eyes, nervous system, musculoskeletal system (the muscles and bones in the body), heart, brain, and kidneys.

About 80% of Mount Sinai Medical Center's patients need no treatment, and the illness goes away in six months to two years. Sarcoidosis may not produce any noticeable symptoms. Symptoms usually appear slowly, and they may disappear as mysteriously as they came, with or without treatment.

Sarcoidosis is not cancer or tuberculosis, and it is not contagious. It may cause symptoms that can be unpleasant, but it is not usually disabling. Symptoms can include a nagging cough, shortness of breath, swollen/discolored areas on your skin, fatigue, night sweats, eye problems, low-grade fever, joint pain, or a feeling that something just isn't right. Or you can have no symptoms at all. Symptoms can last for a while and then disappear. But if they last for more than two years, your sarcoidosis is considered chronic. Regardless of the kinds and/or duration of symptoms, your life probably will be relatively normal.

Background

Sarcoidosis has been known for a long time, but its cause and cure have not been identified. It seems to impact people in many different ways, and can be found amongst family members or co-workers, or as single cases. No one knows if there are reasons why patients with certain organ involvement are found in certain areas of the world. Nor is it known why there can be clusters within families or in work environments. Or why non-smokers tend to be diagnosed more often than smokers. (But don't start or continue to smoke with sarcoidosis!) Statistics show a higher incidence in health care workers, but that may be a statistical factor attributed to their greater attention to monitoring their own health care. No one knows who is likely to get sarcoidosis.

Why did I get it?

The cause of sarcoidosis is not known. Researchers, including your physicians at Mount Sinai Medical Center, have been working diligently for over 80 years to find the cause so that they can then work toward finding a cure. Their work continues. Sarcoidosis can affect anyone, from any race, socioeconomic, gender, geographic background or age group, although most often it is found in people from 20 to 40 years old. Once viewed to be a rare disease, it is now found worldwide. In the United States, it is more common in African-Americans than whites. At Mt. Sinai it is about 50% / 50%.

"Your Diagnosis is Consistent with Sarcoidosis"

A definite diagnosis of sarcoidosis requires a biopsy (sample of tissue) which shows a granuloma without evidence of germs or particles which can cause granulomas (TB, fungus, silica) or a positive skin test called the Kveim-Siltzbach test.

What does that mean? As a result of diagnostic procedures, patients are told that their diagnosis is consistent with sarcoidosis. Since the actual cause is still unknown, tests are conducted to eliminate the possibility of diseases other than sarcoidosis. Technically, tests will show the presence of granulomas, groups of cells that under a microscope resemble a granule. Other diseases are associated with granulomas, but in these diseases other particles also can be seen through the microscope inside the granulomas. When sufficient granulomas are found in an area of the body, lumps or bumps may appear. When an organ is involved, its functioning may be impaired and symptoms may appear. Treatment may be indicated, with duration sometimes lengthy. Unfortunately, in some cases granulomas may become scar tissue that can interfere chronically with the functioning of organs.

Diagnostics

Once your diagnosis is confirmed, you should have additional tests which tell the doctor the extent of the illness, if the illness needs treatment, and the results of treatment. Routine tests usually include a chest x-ray, pulmonary function testing, and blood analysis. The x-ray will show the progress of the disease within the lungs. The pulmonary function tests measure airflow and lung volume. Since the lungs are most often involved, comparative test results show the impact on your breathing. A blood sample may be taken to measure arterial blood levels for oxygen and carbon dioxide. Additionally, patients with sarcoidosis should have their blood and urine calcium levels monitored, since patients may have elevated levels that may cause kidney difficulties. Other tests may be ordered as necessary.

Symptoms

While you may not experience any symptoms, some people may experience one or more of the following:

General symptoms

Fatigue/weakness
Night sweats
Low-grade fever
Weight loss
Trouble sleeping
A feeling that something just isn't right

Lungs

Cough
Shortness of breath
Chest pain or pressure

Skin

Rashes, sores, or reddish patches on your skin
Swollen, painful, red bumps on arms or legs (called erthema nodosum)

Joints

Aches
Swelling
Stiffness

Eyes

Dryness
Sensitivity to light
Blurred vision or floaters
Pain

Lymph Glands

Enlarged nodes

What will happen to me?

You may have no symptoms or you may experience any of the above symptoms, which may appear to varying degrees and for unknown time periods. They may disappear and return at a later time. Your doctor will work with you to determine if treatment is appropriate, and if so, for how long.

Treatment

In a majority of patients, the disease spontaneously disappears, and no treatment is necessary. Should treatment be necessary, your doctor will recommend appropriate measures where the treatment is based on the area involved and the extent of the involvement. Traditionally, corticosteroids were the primary treatment, but today there are many options, with more in clinical trials. Drops and creams can be used for eye and skin involvement, while inhaled drugs may help with lung involvement. The sarcoidosis patient should follow his or her doctor's directions. This usually is just continuation of a normal lifestyle. When drugs are prescribed, they should be taken faithfully, just as the doctor directs. Also, your doctor will discuss with you a schedule for follow-up exams to track the status of the disease and effect of treatments.

It is particularly important that sarcoidosis patients do not smoke.

In most instances, the prognosis is usually good. For most people, the disease and its symptoms will disappear within two years. For a small percentage of patients, the symptoms may become chronic and/or worsen. Sarcoidosis is rarely fatal.

There is no means of predicting the outcome for each person.

Can it be cured?

At least 50% of patients with sarcoidosis are cured without any treatment. 25% will be cured with treatment. The remaining 25% will have chronic sarcoidosis.

What do I do?

You've taken the first step by seeing your doctor at the Mount Sinai Medical Center and receiving a confirmed diagnosis. You and your doctor will determine a course of action ranging from an evaluation to track the status of your illness to medications that assist in keeping the symptoms under control.

Be knowledgeable and understand your illness. Listen to your body as you now have a diagnosis for the symptoms you have been experiencing. But do not blame sarcoidosis for everything uncomfortable that affects your body. Ask questions; sarcoidosis is not responsible for all symptoms you have. Your doctor is your partner in helping you deal with the symptoms of the illness.

Mount Sinai Medical Center Sarcoidosis Service

The Mount Sinai Medical Center has the largest Sarcoidosis Service in the world. Since the Service's establishment by Dr. Louis Siltzbach in 1948, more than 14,000 patients with sarcoidosis have been enrolled. Approximately 40 patients per week and 200 new patients per year seek care from their doctors at Mount Sinai for their sarcoidosis. Importantly, in the United States the diagnostic Kveim-Siltzbach skin test for sarcoidosis is available to patients only at The Mount Sinai Medical Center. While they perform all other diagnostic procedures such as skin biopsy, lymph node biopsy, and lung biopsy, the skin test is diagnostic in up to 80% of their patients, eliminating the need for more invasive, uncomfortable, and expensive procedures. There is experience with immunosuppressive therapy for advanced cases as well as with lung transplantation. The Mount Sinai Medical Center is a Center for research in sarcoidosis.

Mount Sinai Medical Center Sarcoidosis Support Services Group

You are not alone. The patients of the Mount Sinai Sarcoidosis Service conduct a very active patient-run support group, assisted by expert medical staff at the Mount Sinai Sarcoidosis Clinic. The group's purpose is to give support and provide information to fellow sarcoidosis patients. Monthly meetings allow patients to voice their concerns, share experiences, learn about new diagnoses and therapy, and meet the staff of pulmonologists, dermatologists, ophthalmologists and radiologists who participate in their care. The support group maintains a hot line to answer all questions (212) 241-8733. You can be added to the mailing list by leaving your name and address on the hotline. There is no charge for belonging to the support group.