Living With Sarcoidosis

You should take steps to stay healthy. This includes:

Don't smoke.
Avoid substances like dusts and chemicals that can harm your lungs.
Try to follow a healthy eating plan.
Be as active as you can but don't strain yourself.

Joining a patient support group may help you adjust to living with sarcoidosis. Talking to others who have the same symptoms can help you see how they have coped with them. To find a local support group, check your telephone directory.

Your regular doctor may be able to diagnose and treat your sarcoidosis, but diagnosis and treatment by a doctor who specializes in sarcoidosis is recommended. If you prefer to use your regular doctor, you should see a doctor who specializes in the organs that are affected by your sarcoidosis at least once.

For example, see an ophthalmologist if your eyes are affected or a pulmonologist if you have sarcoidosis in your lungs. These specialists are often found at major medical centers. They will work with your regular doctor to help make a diagnosis, develop a treatment plan, and schedule periodic exams and lab tests. .

living with sarcoidosis during Pregnancy

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

Sometimes your 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 you to discuss this issue with your doctor. If you become pregnant, you should be sure to get both good prenatal care and regular sarcoidosis checkups during and after pregnancy.

living with sarcoidosis: Followup Care

Regular followup care is important, even if you aren't taking medication for your sarcoidosis. New symptoms can occur at any time, and your condition can get worse slowly, without your noticing.

Followup exams usually include:

A review of your symptoms
A physical exam
A chest x ray and CT scan
Breathing tests
An eye exam
Blood tests
An electrocardiogram (EKG).

How often you have your examinations and tests depends on:

How severe your symptoms are
Which organs were affected at diagnosis
What treatment you are using
Any complications that may develop during treatment.

You will probably need routine followup care for several years when living with sarcoidosis. Whether you see your regular doctor or a sarcoidosis specialist for this depends on your symptoms during the first year of followup.

Here are some examples of how your followup care can be managed and make living with sarcoidosis easier. They are based on either your condition when you were diagnosed with sarcoidosis or the treatment used.

Followup After Initial Diagnosis

If at diagnosis, you have no symptoms, a normal breathing test, and an abnormal chest x ray:

You should plan on having a followup exam every 6 to12 months until your condition is stable or improving.
Your breathing test may need to be repeated. The need to repeat it depends on your symptoms and ability to be active.

If at your first followup visit, you have no new symptoms and your chest x ray is normal, you can go to your regular doctor for future followup care.

If at diagnosis, you have some symptoms, an abnormal chest x ray, but you don't need treatment:

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

If at your followup exam, your condition has gotten worse (i.e., you now have more symptoms, an abnormal x ray, or abnormal lab tests) you may need treatment.

If treatment is started, you may need followup tests more often.

Followup Based on Your Drug Treatment

If treatment is begun with prednisone:

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

If treatment is begun with hydroxychloroquine:

You should have an eye exam every 6 months while taking this drug.

If treatment is begun with methotrexate:

You should have blood tests every month or every other month to see if you have anemia, low white blood cell or platelet levels, or liver inflammation.

living with sarcoidosis: Other Followup Tests

Depending on how serious your condition is and what organs are affected, you may also need to have certain tests 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 you may have eye damage even if you don´t have symptoms.

These tests may include:

A slit lamp examination. Your doctor uses an instrument with a high-intensity light source to look at the front of your eyes.
A visual fields examination. Your doctor will ask you to you to look at a light through an instrument.
Inspection of your retina and optic nerve.

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

You should also have regular eye exams if you are being treated with:

Chloroquine or hydroxycholoroquine (Plaquenil)
Corticosteroids.

living with sarcoidosis: Breathing Tests

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

living with sarcoidosis: Blood Tests

A blood test for calcium should be done. If your calcium level is high, you probably will need to be treated. You also should not take vitamin and mineral supplements containing calcium or vitamin D, and you should avoid too much exposure to the sun.

living with sarcoidosis: Electrocardiogram

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