How is sarcoidosis diagnosed?

The approach to the diagnosis of sarcoidosis is in constant change. It depends on the clinical situation and varies from patient to patient.

In general, if a person has moderate to severe symptoms or treatment is going to be given, tissue diagnosis is recommended. This means that a biopsy is necessary. The most accessible area that requires the least invasive procedure is usually recommended.

If there is an enlarged lymph node that is easily accessible, this will be biopsied. If the process is in the lung, a lung biopsy will be obtained. This procedure can be performed by a video-assisted thoracoscopy (VAT) on a day surgical basis or in the hospital. A small chest tube is required for 24 to 72 hours after the procedure. Since sarcoidosis may first manifest itself in the skin especially overlying the lower legs (erythema nodosum), the lymph nodes, or the eyes, biopsies of other organ systems may be recommended.

Because of the variable approach to the diagnosis of sarcoidosis, it is important to understand the details of the diagnostic approach you have been given.

The following information is useful in discussing the diagnosis with your doctors. What is the diagnostic test or procedure? Is it a biopsy? What type of biopsy is it? Where is the biopsy going to be obtained? How long will it take? Is it a day surgical procedure? What are the risks of the procedure? What is the meaning of a positive test? What if this test or procedure is negative or shows a nonspecific result? What are the alternative approaches?

In certain situations, ask about a period of observation and deferring the biopsy. What are the other diagnoses under consideration, and what are the risks of observation?

For example, if there is moderate to severe shortness of breath, an abnormal diffusion pulmonary function test, and a chest x-ray showing small tiny nodules, a lung biopsy may be the best approach because treatment is probably going to be needed. If enlarged lymph nodes in the middle of the chest (the hilar region) are discovered from a routine chest x-ray in a 25 year old person with no symptoms, close observation may be the best approach.

Do you have to be in the hospital?

This depends on the severity of the symptoms. The diagnosis may be established without being in the hospital. In unusual situations, the illness may be of such severity that a few days in the hospital to establish the diagnosis and begin treatment may be necessary.

Most non-lung biopsy procedures can be performed on an ambulatory basis. For patients requiring a lung biopsy, the video assisted thoracoscopy (VAT) lung biopsy can be performed on a day surgical basis with a one to two day visit to the hospital or surgical center.

After the biopsy, most of the treatment is on an ambulatory basis with intermittent visits to the doctor’s office or clinic to monitor the course of the illness and make medication adjustments.

Can your family doctor treat sarcoidosis?

At first, your family doctor will probably refer you to a lung specialist for an evaluation if the chest x-ray is abnormal or a surgical specialist for a biopsy. If hospitalization is required, a lung specialist or a sarcoid specialist is usually contacted to provide consultative guidance.

After the diagnosis is established, your family doctor can monitor the course of the illness and treatment. For sarcoidosis, intermittent visits to the lung specialist are often helpful until resolution or stabilization of the process.

As with any medical condition, a second opinion by a lung specialist is an option for confirmation of the diagnosis and review of the treatment plan. In addition, review of the biopsy by a lung pathologist is also an important option for confirmation of the diagnosis.

Is sarcoidosis contagious?

No, sarcoidosis has not been established as contagious. No one can "give" anyone else sarcoidosis. No one can "catch" sarcoidosis from someone who has it.

Is sarcoidosis inherited?

Most of the time sarcoidosis occurs sporadically throughout the population with no known cause. In some situations, sarcoidosis has occurred in twins and among family members. There appears to be a susceptibility to sarcoidosis among some families. The inheritance pattern is not clear.

Can children develop sarcoidosis?

Sarcoidosis in children is rare, but it may occur. Children over age 4 have findings that are similar to sarcoidosis in the adult. Lymph nodes in the lung (hilar region) occur in over 95% of children and 50% of them have sarcoidosis of the lung.

Sarcoidosis before the age of 4 years is rare and is characterized differently than among older children and adults. A triad of rash, eye inflammation and arthritis without lung involvement is characteristic of sarcoidosis in these young children.

Diagnostic approach and treatment is similar to that for adults. For the most part, the outcome of sarcoidosis in children is favorable, in 15% to 20%. There may be sustained damage from the disease.

Does cigarette smoking cause sarcoidosis?

Cigarette smoking does not cause sarcoidosis. The disorder occurs among non-smokers, smokers and ex-smokers.

If individuals with sarcoidosis continue to smoke, the response to treatment may appear slower and the course of the illness may be longer because of the adverse effects of the continued smoking.

Can sarcoidosis occur from the workplace or the environment?

Sarcoidosis is a diagnosis of exclusion, therefore, sarcoidosis does not occur from the workplace or from the environment.

Lung diseases such as berylliosis from the workplace or hypersensitivity pneumonia from the environment mimic sarcoidosis and must be excluded, but they are given the corresponding diagnosis, not sarcoidosis.