A person should take steps to stay healthy. This includes:

Not smoking.

Avoiding substances like dusts and chemicals that can harm the lungs.

Trying to follow a healthy eating plan.

Being as active as possible without straining.

Joining a patient support group may help adjust to living with sarcoidosis. Talking to others who have the same symptoms can help a person to see possible similarities, as well as alternatives regarding treatment and health care management. There are times when a shared experience can be very useful when coping with the challenges of sarcoidosis.

A patient’s regular doctor may be able to diagnose and treat the sarcoidosis, but diagnosis and treatment by a doctor who specializes in sarcoidosis is recommended. If a person prefers to use their regular doctor, they should see a doctor who specializes in the organs that are affected by their sarcoidosis at least once. For example, an ophthalmologist should be seen if the eyes are affected or a pulmonologist if the sarcoidosis is in the lungs. These specialists are often found at major medical centers. They will work with a person’s regular doctor to help make a diagnosis, develop a treatment plan, and schedule periodic exams and lab tests.

Pregnancy

Many women give birth to healthy babies while being treated for sarcoidosis. Pregnancy usually doesn’t affect the course of sarcoidosis, and person can continue corticosteroid treatment through their pregnancy. None of the other drugs are recommended for use during pregnancy.

Sometimes sarcoidosis may get worse after the baby is delivered.

Women with severe sarcoidosis, especially if they are older, may have trouble becoming pregnant.

It’s important for a person to discuss this issue with their doctor. A patient who becomes pregnant should be sure to get both good prenatal care and regular sarcoidosis checkups during and after pregnancy.

Followup care

Regular followup care is important, even if a person isn’t taking medication for their sarcoidosis. New symptoms can occur at any time, and the condition can get worse slowly, without the person noticing.

Followup exams usually include:

A review of the symptoms

A physical exam

A chest X-ray and CT scan

Breathing tests

An eye exam

Blood tests

An electrocardiogram (EKG).

The frequency of examinations and tests depends on:

How severe the symptoms are

Which organs were affected at diagnosis

What treatment is being used

Any complications that may develop during treatment.

A person will probably need routine followup care for several years. Whether they see their regular doctor or a sarcoidosis specialist for this depends on the symptoms during the first year of followup.

Here are some examples of how followup care can be managed. They are based on either the person’s condition at the time of diagnosis with sarcoidosis or the treatment used.

Followup after initial diagnosis

If at diagnosis, there are no symptoms, a normal breathing test, and an abnormal chest X-ray:

A person should plan on having a followup exam every 6 to 12 months until their condition is stable or improving.

A breathing test may need to be repeated. The need to repeat it depends on the symptoms and ability to be active.

If at the first followup visit, there are no new symptoms and the chest X-ray is normal, a person can go to their regular doctor for future followup care.

If at diagnosis, there are some symptoms, an abnormal chest X-ray, but a person doesn’t need treatment:

They should plan on having a followup exam in 3 to 6 months.

If at the followup exam, a person’s condition has become worse (i.e., there are now more symptoms, an abnormal X-ray, or abnormal lab tests) they may need treatment.

If treatment is started, followup tests may be needed more often.

Followup based on the drug treatment

If treatment is begun with prednisone:

Checks should be carried out for the side effects of high blood pressure, too much weight gain, diabetes, loss of calcium from the bones, and pain in one or both hips.

If treatment is begun with hydroxychloroquine:

An eye exam should be performed every 6 months while taking this drug.

If treatment is begun with methotrexate:

Blood tests should be done every month or every other month to see if there is anemia, low white blood cell or platelet levels, or liver inflammation.

Other followup tests

Depending on how serious the condition is and what organs are affected, certain tests may need to be done regularly.

Eye tests

Everyone who is diagnosed with sarcoidosis, even if they don’t have eye symptoms, should see an ophthalmologist (eye doctor) for eye tests. This is important because there may be eye damage even if there are no symptoms.

These tests may include:

A slit lamp examination. An instrument with a high-intensity light source is used to look at the front of the eyes.

A visual fields examination. The patient will be asked to look at a light through an instrument.

Inspection of the retina and optic nerve.

If eye symptoms develop, a doctor will have you repeat the tests.

A person should also have regular eye exams if they are being treated with:

Chloroquine or hydroxycholoroquine (Plaquenil)

Corticosteroids.

Breathing tests

These tests are used to check the course of sarcoidosis in the lungs. The results are compared over time.

Blood tests

A blood test for calcium should be done. If the calcium level is high, treatment is probably needed. A person also should not take vitamin and mineral supplements containing calcium or vitamin D, and should avoid too much exposure to the sun.

Electrocardiogram

This test is needed to make sure that the heart is still not affected by sarcoidosis. The heart can be affected at any time if the sarcoidosis is active.

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Disclaimer:

The comments from individuals, regarding their personal experiences with treatments of choice, successes or disappointments relating to specific medications, either medical prescriptions and or alternative homeopathic medicines or nutritional substances, is not intended to provide a basis for action in particular circumstances without consideration and consultation by a competent physician or professional. Please consult your primary care physician or doctor who is attending to your health care as a safety precaution. In addition, the posting of testimonials or any comparative information is for the sole purpose of offering information, education, and alternative opportunities for our readers and in no way should be construed as a directive on the part of the Armsted R. Christian Foundation for Sarcoidosis Research. If professional advice or other expert assistance is required, the services of a competent physician or professional person should be sought.