sarcoidosis signs and symptomse

Signs and symptoms of sarcoidosis. Image source: National Heart, Lung, and Blood Institute.

Sarcoidosis involves inflammation that produces tiny lumps of cells in various organs in the body. The lumps are called granulomas because they look like grains of sugar or sand. They are very small and can be seen only with a microscope.


These tiny granulomas can grow and clump together, making many large and small groups of lumps. If many granulomas form in an organ, they can affect how the organ works. This can cause symptoms of sarcoidosis.


Sarcoidosis can occur in almost any part of the body, although it usually affects some organs more than others. It usually starts in one of two places:


  • Lungs
  • Lymph nodes, especially the lymph nodes in the chest cavity.

    Sarcoidosis also often affects the:


  • Skin
  • Eyes
  • Liver.

    Less often, sarcoidosis affects the:


  • Spleen
  • Brain
  • Nerves
  • Heart
  • Lacrimal glands
  • Salivary glands
  • Bones and joints.

    Rarely, sarcoidosis affects other organs, including the:


  • Thyroid gland
  • Breasts
  • Kidneys
  • Reproductive organs.

    Sarcoidosis almost always occurs in more than one organ at a time.


    Sarcoidosis has an active and a nonactive phase:


  • In the active phase, the granulomas form and grow. In this phase, symptoms can develop, and scar tissue can form in the organs where the granulomas occur.

  • In the nonactive phase, the inflammation goes down, and the granulomas stay the same size or shrink. But the scars may remain and cause symptoms.

    The course of the disease varies greatly among people.


  • In many people, sarcoidosis is mild. The inflammation that causes the granulomas may get better on its own. The granulomas may stop growing or shrink. Symptoms may go away within a few years.

  • In some people, the inflammation remains but doesn't get worse. You may also have symptoms or flare-ups and need treatment every now and then.

  • In other people, sarcoidosis slowly gets worse over the years and can cause permanent organ damage. Although treatment can help, sarcoidosis may leave scar tissue in the lungs, skin, eyes, or other organs. The scar tissue can affect how the organs work. Treatment usually does not affect scar tissue.

    Changes in sarcoidosis usually occur slowly (e.g., over months). Sarcoidosis does not usually cause sudden illness. However, some symptoms may occur suddenly. They include:


  • Disturbed heart rhythms
  • Arthritis in the ankles
  • Eye symptoms.

    In some serious cases in which vital organs are affected, sarcoidosis can result in death.


    Sarcoidosis is not a form of cancer.


    There is no known way to prevent sarcoidosis.


    Sarcoidosis was once thought to be an uncommon condition. It's now known to affect tens of thousands of people throughout the United States alone. Because many people who have sarcoidosis have no symptoms, it's hard to know how many people have the condition.


    Sarcoidosis was identified in the late 1860s. Since then, scientists have developed better tests to diagnose it and made advances in treating it.



    The cause of sarcoidosis is not known. And, there may be more than one thing that causes it.


    Scientists think that sarcoidosis develops when the immune system responds to something in the environment (e.g., bacteria, viruses, dust, chemicals) or perhaps to the body's own tissues (autoimmunity).


    Normally, the immune system defends the body against things that it sees as foreign and harmful. It does this by sending special cells to the organs that are being affected by these things. These cells release chemicals that produce inflammation around the foreign substance or substances to isolate and destroy them.


    In sarcoidosis, this inflammation remains and leads to the development of granulomas or lumps.


    Scientists have not yet identified the specific substance or substances that trigger the immune system response in the first place. They also think that sarcoidosis develops only if a person has inherited a certain combination of genes.


    A person cannot catch sarcoidosis from someone who has it.


    More research is needed to discover what causes sarcoidosis.


    Who is at risk?

    Sarcoidosis affects people of all ages and races worldwide.


    It occurs mostly in:


  • Adults between the ages of 20 and 40
  • African Americans (especially women)
  • People of Asian, German, Irish, Puerto Rican, and Scandinavian origin.

    In the United States, sarcoidosis affects African Americans somewhat more often and more severely than Caucasians.


    Studies have shown that sarcoidosis is more likely to affect certain organs in certain populations. For example,


  • Sarcoidosis of the heart and eye appears to be more common in Japan.
  • Painful skin lumps on the legs occur more often in people from Northern Europe.

    People who are more likely to get sarcoidosis include:


  • Health care workers
  • Nonsmokers
  • Elementary and secondary school teachers
  • People exposed to agricultural dust, insecticides, pesticides, or mold
  • Firefighters.

    Brothers and sisters, parents, and children of people who have sarcoidosis are more likely than others to have sarcoidosis.


    Signs and symptoms

    Many people who have sarcoidosis have no symptoms. Often, the condition is discovered by accident only because a person has a chest X-ray for another reason, such as a pre-employment X-ray.


    Some people have very few symptoms, but others have many.


    Symptoms usually depend on which organs the disease affects.


    Lung symptoms

  • Shortness of breath
  • A dry cough that doesn't bring up phlegm, or mucus
  • Wheezing
  • Pain in the middle of your chest that gets worse when you breathe deeply or cough (rare).

    Lymph node symptoms

  • Enlarged and sometimes tender lymph nodes – most often those in the neck and chest but sometimes those under the chin, in the arm pits, or in the groin.

    Skin symptoms

  • Various types of bumps, ulcers, or, rarely, flat areas of discolored skin, that appear mostly near the nose, eyes, back, arms, legs, and scalp. They usually itch but aren't painful. They usually last a long time.

  • Painful bumps that usually appear on the ankles and shins and can be warm, tender, red or purple-to-red in color, and slightly raised. This is called erythema nodosum. A person may have fever and swollen ankles and joint pain along with the bumps. The bumps often are an early sign of sarcoidosis, but they occur in other diseases too. The bumps usually go away in weeks to months, even without treatment.

  • Disfiguring skin sores that may affect your nose, nasal passages, cheeks, ears, eyelids, and fingers. This is called lupus pernio. The sores tend to be ongoing and can return after treatment is over.

    Eye symptoms

  • Burning, itching, tearing, pain
  • Red eye
  • Sensitivity to light
  • Dryness
  • Floaters (i.e., seeing black spots)
  • Blurred vision
  • Reduced color vision
  • Reduced visual clearness
  • Blindness (in rare cases).

    Heart symptoms

  • Shortness of breath
  • Swelling in the legs
  • Wheezing
  • Coughing
  • Irregular heartbeat, including palpitations (a fluttering feeling of rapid heartbeats) and skipped beats
  • Sudden loss of consciousness
  • Sudden death.

    Joint and muscle symptoms

  • Joint stiffness or swelling – usually in the ankles, feet, and hands.
  • Joint pain.
  • Muscle aches (myalgias).
  • Muscle pain, a mass in a muscle, or muscle weakness.
  • Painful arthritis in the ankles that results from erythema nodosum. It may need treatment but usually clears up in several weeks.
  • Painless arthritis that can last for months or even years. It should be treated.

    Bone symptoms

  • Painless holes in the bones.
  • Painless swelling, most often in the fingers.
  • Anemia that results from granulomas affecting the bone marrow. This usually should be treated.

    Liver symptoms

  • Fever
  • Fatigue
  • Itching
  • Pain in the upper right part of the abdomen, under the right ribs
  • Enlarged liver.

    Parotid and other salivary gland symptoms

  • Swelling, which makes the cheeks look puffy
  • Excessive dryness in the mouth and throat.

    Blood, urinary tract, and kidney symptoms

  • Increased calcium in the blood or urine, which can lead to painful kidney stones
  • Confusion
  • Increased urination.

    Nervous system symptoms

  • Headaches.
  • Vision problems.
  • Weakness or numbness of an arm or leg.
  • Coma (rare).
  • Drooping of one side of the face that results from sarcoidosis affecting a facial nerve. This can be confused with Bell's palsy, a disorder that may be caused by a virus.
  • Paralysis of your arms or legs that results from sarcoidosis affecting the spinal cord.
  • Weakness, pain, or a "stinging needles" sensation in areas where many nerves are affected by sarcoidosis.

    Pituitary gland symptoms (rare)

  • Headaches
  • Vision problems
  • Weakness or numbness of an arm or leg
  • Coma (rare).

    Other symptoms

  • Nasal obstruction or frequent bouts of sinusitis.
  • Enlarged spleen, which leads to a decrease in platelets in the blood and pain in the upper left abdomen. Platelets are needed to help the blood clot.

    Sarcoidosis may also cause more general symptoms, including:


  • Uneasiness, feeling sick (malaise), an overall feeling of ill health
  • Tiredness, fatigue, weakness
  • Loss of appetite or weight
  • Fever
  • Night sweats
  • Sleep problems

    These general symptoms are often caused by other conditions. If a person has these general symptoms but doesn't have symptoms from affected organs, he or she probably does not have sarcoidosis.



    Sarcoidosis is diagnosed by taking a detailed medical history and conducting a physical exam and several diagnostic tests. The purpose is to:


  • Identify the presence of granulomas in any of the organs.
  • Rule out other causes of the symptoms.
  • Determine the amount of damage to any of the affected organs.
  • Determine whether a person needs treatment.

    Medical history

    A doctor will ask for a detailed medical history. He or she will want to know about any family history of sarcoidosis and what jobs a person has had that may have increased their chances of getting sarcoidosis.


    The doctor may also ask whether a person has ever been exposed to inhaled beryllium metal, which is used in aircraft and weapons manufacture, or organic dust from birds or hay. These things can produce granulomas in the lungs that look like the granulomas that are caused by sarcoidosis but are actually signs of other conditions.


    Physical exam

    A doctor will look for symptoms of sarcoidosis, such as red bumps on the skin; swollen lymph nodes; an enlarged liver, spleen, or salivary gland(s); or redness in the eyes. He or she will also listen for abnormal lung sounds or heart rhythm, and will check for other likely causes of the symptoms.


    Diagnostic tests

    There is no one specific test for diagnosing sarcoidosis. It is harder to diagnose sarcoidosis in some organs (e.g., heart, nervous system) than in others. A doctor will probably conduct a variety of tests and procedures to help in the diagnosis.


    These include:


  • chest X-ray. A chest X-ray takes a picture of the heart and lungs. It may show granulomas or enlarged lymph nodes in the chest. About 95 out of every 100 people who have sarcoidosis have an abnormal chest X-ray.


    Doctors usually use a staging system for chest X-rays taken to detect sarcoidosis:


         Stage 0: Normal chest X-ray
         Stage 1: Chest X-ray showing enlarged lymph nodes but otherwise clear lungs
         Stage 2: Chest X-ray showing enlarged lymph nodes and shadows in the lungs
         Stage 3: Chest X-ray showing shadows in the lungs, but the lymph nodes are not enlarged
         Stage 4: Chest X-ray showing scars in the lung tissue.


    In general, the higher the stage of the X-ray, the worse the symptoms and lung function are. But there are a lot of differences among people. If the X-ray results show Stages 0, 1, 2, or 3, the patient may not have symptoms or need treatment, and may get better and have normal chest X-rays again over time.

  • blood tests. These tests can show the number and type of cells in the blood. They also will show whether there are increases in the calcium levels or changes in the liver, kidney, and bone marrow that can occur with sarcoidosis.

  • lung function tests. One test uses a spirometer, a device that measures how much and how fast a person can blow air out of their lungs after taking a deep breath. If there is a lot of inflammation and/or scarring in the lungs, a person will not be able to move normal amounts of air in and out.

    Another test measures how much air the lungs can hold. Sarcoidosis can cause the lungs to shrink, and they will not be able to hold as much air as healthy lungs.

  • electrocardiogram (EKG). This test will help show if the heart is affected by sarcoidosis.

  • pulse oximetry. A small clip attached to the finger tip can show how well the heart and lungs are moving oxygen into the blood.

  • Arterial blood gas test. This test is more accurate than pulse oximetry for checking the level of oxygen in the bloodstream. Blood is taken from an artery (usually in the wrist). It is then analyzed for its oxygen and carbon dioxide levels.

  • fiberoptic bronchoscopy. In this procedure, a doctor inserts a long, narrow, flexible tube with a light on the end through the nose or mouth into the lungs to look at your airways. This tube is called a bronchoscope. A person most likely would have this procedure as an outpatient in a hospital under local anesthesia.

  • Bronchoalveolar lavage (BAL). During bronchoscopy, a doctor may inject a small amount of salt water (saline) through the bronchoscope into the lungs. This fluid washes the lungs and helps bring up cells and other material from the air sacs deep in the lungs where the inflammation usually starts to develop. The cells and fluid are then examined for signs of inflammation.

  • biopsy. A doctor may take a small sample of tissue from one of the affected organs. For example, when breathing tests or chest X-rays show signs of sarcoidosis in the lungs, a doctor may do a fiberoptic bronchoscopy biopsy. This will help confirm the diagnosis. Tiny forceps as inserted through the bronchoscope to collect tissue that will be examined. Because the granulomas may be spread out in the lungs, the bronchoscope may miss some of them.
    Biopsies of the skin and liver are sometimes done to detect granulomas in these organs.

    A person may have sarcoidosis in other organs as well and multiple biopsies may be necessary. However, every organ involved does not need to be biopsied for a diagnosis to be made.

  • computed tomography (CT) scan. This test provides a computer-generated image of the organs that has more detail than a regular chest X-ray. It can provide more information about how sarcoidosis has affected an organ.

    A doctor may do a CT scan to:
         Obtain more information about how much of the lung is affected by sarcoidosis.
         Detect sarcoidosis in the liver. A CT scan of the abdomen will show if the liver is enlarged and if there is a pattern suggesting granulomas.

  • magnetic resonance (MR) scan. This test is also called nuclear magnetic resonance (NMR) scanning or magnetic resonance imaging (MRI). This scan uses powerful magnets and radio waves to make images of some of the organs that a doctor doesn't want to risk doing a biopsy on. For example, an MR scan can be used to diagnose sarcoidosis in the brain, spinal cord, nerves, or heart.

  • thallium and gallium scans. These scans are often done to see if sarcoidosis is affecting the heart. Thallium and gallium are radioactive elements. A doctor injects a small amount of one of them into the patient's vein in the arm. The elements collect at places in the body where there is inflammation. After a while, the body is scanned for radioactivity. Increased radioactivity at any place may be a sign of inflammation.

    This test gives information on the tissue in the body that has been affected by sarcoidosis and the amount of damage to it. But since this test shows all inflammation in the body, even inflammation caused by conditions other than sarcoidosis, it does not give a definite diagnosis of sarcoidosis.

  • positron emission tomography (PET) scan. This test also uses radioactive injections. It may be more sensitive than gallium in detecting areas of inflammation. Some doctors are using it instead of gallium scans.

    Your doctor may not need to find every one of the organs affected by sarcoidosis, only those that cause symptoms. Often the organs affected by the condition continue to function well and don't need to be treated.


    The goals of treatment are to:


  • Improve how the organs affected by sarcoidosis work
  • Relieve symptoms
  • Shrink the granulomas.

    Treatment may shrink the granulomas and even cause them to disappear, but this may take many months. If scars have formed, treatment may not help, and a person may have ongoing symptoms.


    A person's treatment depends on:


  • What symptoms he or she has
  • How severe the symptoms are
  • Whether any of the vital organs (e.g., the lungs, eyes, heart, or brain) are affected
  • How the organ is affected.

    Some organs must be treated, regardless of the symptoms. Others may not need to be treated. Usually, if a person doesn't have symptoms, he or she doesn't need treatment, and they probably will recover in time.



    The main treatment for sarcoidosis is prednisone. Prednisone is a corticosteroid, or anti-inflammatory drug. Sometimes it is used with other drugs. Sometimes other corticosteroids are used.


    Prednisone almost always relieves symptoms of inflammation. If a symptom doesn't improve with prednisone treatment within a couple of months, consult your physician.


    Prednisone is usually given for many months, sometimes for a year or more.


    Low doses of prednisone can often relieve symptoms without causing major side effects.


    When used at high doses, prednisone can cause serious side effects.


    Side effects can include:


  • Weight gain.
  • Diabetes.
  • High blood pressure.
  • Mood swings (depression).
  • Difficulty sleeping at night.
  • Heartburn.
  • Acne.
  • Thinning of the skin and bones (called osteoporosis).
  • Cataracts.
  • Glaucoma.
  • Adrenal gland insufficiency, which occurs when the adrenal glands don't make enough of certain hormones. This requires treatment by an endocrinologist, a doctor who specializes in the diagnosis and treatment of the endocrine glands. The endocrine glands include the adrenal and pituitary glands.
  • Aseptic or avascular necrosis of the hip, the development of cysts and hardened and dead tissue in the hip. A doctor can usually help a person manage these side effects.

    When it is time to stop taking prednisone, a person should cut back slowly, with a doctor's help. This will help prevent flare-ups of sarcoidosis and allow the body to adjust to life without the drug.


    A person may also want to see an endocrinologist to make sure that the endocrine glands are making enough hormones. The endocrinologist may prescribe certain hormones for the patient to take until their endocrine glands are working well again.


    Other drugs used to treat sarcoidosis

    Other drugs are sometimes used to treat sarcoidosis. A doctor may prescribe one of them if:


  • A person's condition gets worse while they are taking prednisone
  • A person can't stand the side effects of prednisone.

    Most of these other drugs are immune system suppressants. This means that they prevent the immune system from fighting things like bacteria and viruses. As a result, a person may have a greater chance of getting infections.


    Most of these drugs also can cause serious side effects. Some also could increase the chances of getting cancer, especially if they are taken at high doses.


    A person and his or her doctor must weigh living with the symptoms of sarcoidosis against the side effects of the drugs.


    Some drugs work better than others for different people.


    A person may be given more than one drug.


    Some drugs used to treat sarcoidosis are taken by mouth. Others are applied locally to an affected area.


    Local therapy is the safest way to treat sarcoidosis. The drug is applied directly to the affected area. As a result, only small amounts of the drug reach other parts of the body.


    Drugs used for local therapy include:


  • Eye drops
  • Inhaled drugs for the lungs
  • Skin creams.

    Drugs can be used locally only if the affected area is easily reached. For instance, inhaled steroids can ease coughing and wheezing in the upper airways, but they don't seem to relieve these symptoms when the affected lung tissue is deep within the chest.


    A person should talk with their doctor about these treatments and the side effects that may occur.


    The other drugs used to treat sarcoidosis include:


  • hydroxychloroquine (Plaquenil). This drug can usually help people who have sarcoidosis in the skin or a high level of calcium in their blood. This drug can irritate the stomach. It also can cause eye problems. Before starting on this drug, a person should see an ophthalmologist, or eye doctor, for some baseline tests. Once a person starts taking it, they should have their eyes examined every 6 months.

  • methotrexate. This drug is taken once a week by mouth or injection and usually takes up to 6 months to relieve symptoms. This drug may cause side effects, especially if taken in high doses. These include:


         Mouth sores.
         A decrease in infection-fighting white blood cells. A person then has a greater chance of getting an infection. If this drug is taken, a person should have regular blood tests to check the levels of their white blood cells.
         An allergic reaction in the lungs that goes away when the person stops taking the drug. This is extremely rare.
         Liver damage. This is the most serious side effect. If methotrexate is taken, a person should be monitored regularly by a physician.


    If a person is pregnant, they should not take this drug. Taking folic acid can help reduce the chances of having bad side effects from methotrexate.

  • azathioprine (Imuran). This drug may work in about half of the people who have sarcoidosis. It is usually taken for at least 6 months. Side effects include:


         Reduced white blood cell levels, which increases a person's chances of getting an infection.

    This drug has caused cancer in some people, especially when they have taken it at high doses. It should not be taken by patients who are pregnant.


  • cyclophosphamide (Cytoxan). This is a very toxic drug. It is rarely used to treat sarcoidosis. It is given only to people who have serious forms of sarcoidosis, such as sarcoidosis in their central nervous system (neurosarcoidosis). This drug is more likely to cause nausea and reduce the white blood cell levels than either methotrexate or azathioprine. A doctor should check the white blood cell levels often while a person is taking this drug to make sure they have a high enough level to fight infection. Cyclophosphamide can also irritate the bladder. Some people who have taken it for more than 2 years have developed bladder cancer. It should not be taken during pregnancy. Cyclophosphamide can be given intravenously (through one of the veins), which lessens some of its side effects, but this doesn't reduce the risk of cancer.

    Treatments for specific types of sarcoidosis

  • eyes. Sarcoidosis in the eyes almost always responds well to treatment. Often, the only treatment needed is eye drops containing corticosteroids. A person should have yearly eye exams, even if they think their eyes are doing well.

  • spleen. Sarcoidosis can cause the spleen to enlarge. This can lead to a decrease in the red or white blood cells or platelets and increase the chances of infection and blood clotting disorders. Treatment is usually given to increase the number of blood cells and ease pain. In rare cases, the spleen may need to be removed.

  • liver. Sarcoidosis rarely causes permanent liver damage. As a result, the liver usually isn't treated unless it's causing major symptoms (e.g., fever). Drug treatment can usually reduce granulomas in the liver. Liver transplantation has been successful in those rare cases in which the condition has become worse. Follow-up care includes regular blood tests to find out how well your liver is working. A person should check with their doctor to find out how often they need these tests.

  • nervous system. Sarcoidosis in the nervous system (neurosarcoidosis) usually needs treatment. Nerve tissue heals slowly, so treatment often takes a long time. A person may need to take several drugs at high doses.

  • erythema nodosum. These painful bumps on the shins often go away in weeks to months without treatment. A doctor probably will not give medication unless a person is very uncomfortable. Aspirin or ibuprofen, an anti-inflammatory drug that can be bought without a prescription, will usually help.

  • heart. Sarcoidosis in the heart is usually treated with steroids. Heart drugs may also be given to improve the heart's pumping ability or to correct a disturbed heart rhythm. If a person has a severe heart rhythm disturbance, their doctor may prescribe one of these devices:


         A cardiac pacemaker, a small battery-operated device, often put under the skin, that regulates the heartbeat
         A defibrillator, an implanted device that shocks the heart into a normal heartbeat or, if it has stopped, into beating.

    If the heart is severely affected and doesn't respond to treatment, a transplant may be done. But this is rarely needed.

  • lupus Pernio. This rash on the face, especially the cheeks and nose, can be distressing because it's in a very visible area. It often occurs with loss of the sense of smell, nasal stuffiness, and sinus infections. Options for treatment include:


  • Local treatment with skin creams
  • Oral drugs (plaquenil or prednisone, for example)
  • Local injections of steroid preparations.

    Lupus pernio is often treated by dermatologists, doctors who specialize in skin diseases, working with a sarcoidosis specialist. Because sarcoidosis varies so much among different people, a doctor may find it hard to tell whether the treatment is helping.


    Other drugs being studied for use in treating sarcoidosis

    Scientists also are studying drugs that are used for other conditions to see if they can help people who have sarcoidosis. These drugs include:


  • Etanercept (Enbrel). This drug is an immune system suppressant. It's injected under the skin to reduce symptoms of rheumatoid arthritis. It may also be used to treat psoriasis or ankylosing spondylitis, a type of arthritis that affects the joints in the spine. Early studies suggest that it will not be useful in treating sarcoidosis, but research is ongoing.

  • Infliximab (Remicaide). This drug is an immune system suppressant. It's injected into a vein in the arm. It's used to treat Crohn's Disease, rheumatoid arthritis, and ankylosing spondylitis. Some studies have shown it to help sarcoidosis patients who also have lupus pernio, eye disease, or neurosarcoidosis. This drug has serious side effects but may improve lung function in some people who aren't helped by corticosteroids. More research is needed.

  • Pentoxifylline. This drug is an immune system suppressant. Stomach and gastrointestinal side effects are common. Early studies show that it has helped some people who have sarcoidosis in their lungs reduce their doses of prednisone while taking it. More research is needed.

  • Tetracycline. Tetracycline antibiotics are used to treat Lyme Disease, some types of pneumonia, and acne. A few small studies suggest that they may help in treating sarcoidosis in the skin. Research is ongoing.

  • Thalidomide. This immune system suppressant can cause bad side effects. It is effective against other conditions that involve granulomas of the skin (e.g., leprosy, tuberculosis). Scientists are studying this drug to see if it can be used to treat sarcoidosis in the skin.

    The future

    Scientists worldwide are trying to learn more about sarcoidosis and how to improve its diagnosis and treatment. Some recent studies have led to possible new treatments, which, in turn, are being studied. Current research includes studies of:


  • The agent or agents that cause sarcoidosis
  • Why sarcoidosis seems to act differently in people of different races
  • Why sarcoidosis appears in some families
  • How genes, passed from one generation to another, may make some people more likely than others to develop sarcoidosis
  • How cells act and communicate with each other to cause sarcoidosis symptoms.

    Living with sarcoidosis

    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 see how they have coped with them.


    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.



    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.


    Follow-up care

    Regular follow-up 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.


    Follow-up 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 follow-up.


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


    Follow-up 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 follow-up 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 follow-up visit, there are no new symptoms and the chest X-ray is normal, a person can go to their regular doctor for future follow-up 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 follow-up exam in 3 to 6 months.


  • If at the follow-up 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, follow-up tests may be needed more often.

    Follow-up 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 follow-up 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.



    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.