Ambulatory Health Care Center

University of Southern California

1200 N. State St., Rm. 11-900

1. What is sarcoidosis?

Sarcoidosis is an inflammation in which lymphocytes, a type of blood cell, become overactive. These overactive

lymphocytes release chemical substances which cause granulomas (a collection of inflammatory cells) in various

organs of the body. Although sarcoidosis is a multisystem disorder, it affects the lungs 90% of the time, making it

primarily a lung disease.

2. What does the name "sarcoidosis" mean?

The name Sarcoid comes from the Greek word sarko meaning "flesh". The OID is also from the Greek and

means "like". So, sarcoidosis means flesh-like or fleshy, referring to the small skin tumors that can develop. It is

pronounced SAR-COY-DO-SIS.

3. What causes sarcoidosis?

So far, research has shown that sarcoidosis is not caused by any known bacteria, mold or dust particles. Nor is it

due to any gases or fumes. Some researchers believe that sarcoidosis is caused by a virus, but the nature of such an

agent remains unclear.

4. How do I know if I have sarcoidosis?

Many patients do not have any symptoms, but some have difficulty in breathing. Others have dry cough; still others

may have pain in the chest, tiredness, lethargy and listlessness. Sarcoidosis may also cause fever and weight

loss. Whether you have symptoms or not, your chest x-ray will almost always be abnormal.

5. What organs are affected by sarcoidosis?

The lungs are the most commonly affected organs by far, but-the disease can also involve the eyes, skin, lymph

glands, bones and joints, heart, nervous system and other internal organs. For this reason sarcoidosis is classified as

a multisystem disorder.

6. What is the effect of the disease on lungs?

Shortness of breath, cough, chest pain and tightness are the most common complaints of sarcoidosis of the lungs.

Severe scarring (fibrosis) of the lungs can cause respiratory failure.

7. What is the effect of the disease on eyes?

Burning, itchy, red, light sensitive eyes are the usual symptoms. If sarcoidosis of the eyes is not recognized

and properly treated, blindness may occur.

8. What is the effect of sarcoidosis on skin?

Reddish-blue patches, rash, nodules and small growths are features of skin sarcoidosis. Skin nodules are neither

itchy nor painful. They do not weep fluid. In some cases, skin tumors or growths can be become scarred and ugly.

9. What is the effect of sarcoidosis on lymph glands?

Often there are no symptoms to this form of sarcoidosis, or at the most, glands in the neck, axillae and groin may

become enlarged and swollen.

10. What is the,e4fect of the disease on bones and

Pain in joints is usually the only symptom and often there is no pain. Unlike some forms of arthritis, bone and joint

sarcoidosis does not cause crippling of any kind.

11. What is the effect of the disease on the heart?

Irregular heart rhythm and episodes of dizziness are some of the major symptoms, but it is possible to be symptom

free. When extensive thickening of the heart muscle with granulomas and scarring occur, sudden death can result.

12. What is the effect on the nervous system?

Tingling, numbness, paralysis of the face, usually on one side, are common symptoms. Sudden onset of facial

paralysis is temporary and the patient recovers full use of muscles over a period of time. Sarcoidosis of the nervous

system can also result in seizures, paralysis of limbs, difficulty in swallowing, dizziness and vertigo.

13. How do I know if my sarcoidosis is serious?

If your lungs have been badly scarred, and if your sarcoidosis involves the heart, eyes or central nervous system,

then most likely your disease is complicated and you will need treatment by a sarcoidosis specialist. If, however, sar-

coidosis has only affected the glands in your lungs, it is probable that your disease will remain harmless.

14. Is the disease contagious?

There is no evidence that sarcoidosis is contagious.

15. Is my skin rash contagious?

Not at all. In some patients the skin rash of sarcoidosis may look unsightly, but there is no need to worry about

infecting another person.

16. Is sarcoidosis a form of lung cancer?

No. Sarcoidosis is not related to lung cancer.

17. Is it related to or a form of AIDS?

No. Sarcoidosis is not related to Acquired Immune Deficiency Syndrome (AIDS) or any sexually transmitted or

intravenous drug use disorder.

When you see your doctor or other medical personnel for your disease, you might hear the words "Hodgkin's

disease" mentioned. Remember, sarcoidosis may look like Hodgkin's disease, but it is not related to Hodgkin's

disease.

No. Sarcoidosis does not cause diabetes, but prednisone, used for treating sarcoidosis, may cause diabetes in those

patients who are predisposed to develop diabetes.

20. Is sarcoidosis an allergic disease?

Sarcoidosis is not caused by any known allergic substances including pollens, grasses, fish, mites, or other

animal and vegetable proteins.

21. Can sarcoidosis develop into asthma?

Asthma is an allergic lung disease. Some patients with sarcoidosis may have allergies that cause asthma, but

sarcoidosis does not develop into asthma.

22. Can sarcoidosis develop into emphysema?

Although sarcoidosis causes lung destruction, it does not

cause emphysema.

23. Could my sudden shortness of breath

prove fatal?

Usually, not. Shortness of breath in sarcoidosis develops over a period of time. If you have a sudden attack of

shortness of breath it is probably not due to your sarcoidosis. For sudden shortness of breath, see your doctor.

24. Sometimes I feel tired. Does sarcoidosis

cause fatigue?

Patients with badly scarred lungs, heart or muscle involvement complain of tiredness, fatigue or lethargy

due to lack of oxygen and increased work of breathing.

25. How long does it take to recover from

If your sarcoidosis appears suddenly, in many cases overnight, and you have large, tender, red, bumps on

your legs (erythema nodosum), then you can expect to be free of disease within 12 to 18 months. If your illness

develops gradually, over many months or years, it may last much longer, anywhere from several months to your

entire lifetime.

26. Can you tell me about congestive cardiomyopathy brought on by long term pulmonary involvement? How is it treated?

Long term pulmonary involvement (fibrosis/scarring) causes failure of the right side of the heart called cor pul-

monale. It is due to the lack of oxygen. You need to be on oxygen if your oxygen is low. Prednisone, chloroquine on

hydroxychloroquine and methotrexate are the drugs used to treat sarcoidosis of the heart muscle.

27. In talking to several women who have sarcoidosis, I discovered some of us have severe

back pain, in the muscle along the bra line and then up the middle. It is more severe at some

times than others. Can you shed any light as to the cause?

Back pain may be due to enlargement of the glands (hilar) in the chest, muscle spasm, arthritis in the spine involve-

ment of the nerves supplying the torso or even osteoporosis related to prednisone. In some cases pain in the chest may

be due to the involvement of the lung lining or pleura. Thus, persistent back pain requires careful evaluation.

28. If sarcoidosis is a multi-system disease, what is the worse case possible?

When sarcoidosis involves the heart, eyes, brain and kidneys the outlook is bad.

29. There isn't much known about granulomatous nephritis. What if any relation does it have with

sarcoidosis? How do you know the difference between the two diseases?

If a patient with sarcoidosis develops granuloma in the kidney, the renal inflammation then most likely is due to

sarcoidosis. On the other hand, if kidneys are the only organs that show granulomas, then other causes need

to be excluded.

30. Has any geologic element or mineral been implicated as a possible agent causing

Multisystem sarcoidosis is not caused by any element, but granulomatous disease may be caused by beryllium in the

lungs and skin. The disease is called berylliosis.

31. Could "red and watery eyes" be a symptom of diseases other than those due to allergy?

"Red and watery" eyes particularly with light sensitivity may be due to sarcoidosis, autoimmune disease, or local

eye inflammation or tumor.

32. Are there areas in the US where sarcoidosis is mere prominent? If the answer is yes, has

any research been done to find out the reason?

Sarcoidosis is common in the south and southeast; a lot of research is being done to find out the cause and distribu-

tion of sarcoidosis.

33. My brother has neurosarcoidosis. What is it and how is it caused?

Sarcoidosis of the central nervous system occurs in about 10 percent of the patients. Any part of the nervous system

including the brain, meningitis, nerves and spinal cord may be damaged.

34. What is the relationship between Raynaud's syndrome and sarcoidosis?

There is no definite relationship between Raynaud's syndrome and sarcoidosis. Raynaud's phenomenon or

sensitivity to cold occurs in patients with scleroderma and other autoimmune diseases.

35. Can sarcoidosis cause progressive arthritis?

Joints are infrequently affected in sarcoidosis, severe arthritis is rare.

36. Do patients with sarcoidosis have left arm pain?

Not specifically, but chest pain may occur in patients who have enlarged hilar or mediastinal glands and in patients

with sarcoidosis of peripheral nerves.

37. Are other rheumatological diseases associated with sarcoidosis?

Not commonly. There are a few patients who may have sarcoidosis associated with rheumatoid arthritis,

scleroderma or lupus erythematosus.

38. Are some countries or populations more prone to sarcoidosis?

Sarcoidosis is very prevalent in Scandinavian countries. The incidence there is about 600 per 100,000 of population;

whereas, in America the incidence is about 40-60/100,000.

39. Is it possible that sarcoidosis will go away and never return?

Yes, in patients with bilateral hilar adenopathy and erythema nodosum, sarcoidosis often goes away without

any treatment.

40. Is it possible to be in remission and have no symptoms but still have low pulmonary test reading?

Yes, it is possible to have mildly impaired lung function with no evidence of active disease. This is due to residual

scarring of the lungs.

41. When I had a biopsy done, the specimen showed granulomas. What does it mean?

I received injuries about 20 years ago. The scars now look like keloids.

Granuloma is a lesion consistent with sarcoidosis. When sarcoidosis becomes active, old injuries and scars light up,

become tender and firm, and on biopsy show granulomas.

42. When the "eye lesions" flare-up, what actually causes so much pain?

Inflammation of the conjunction, cornea and uveal tract cause redness, pain, and light sensitivity.

43. What is the cause of the constant and persistent cough? It reminds me of my uncle

who had tuberculosis.

Cough is related to inflammation of the airway or bronchi. It has no relationship tuberculosis.

44. Is it common for sarcoidosis to first appear in the lungs?

Yes. Sarcoidosis commonly involves the lungs. In more than 90% of the patients chest x-ray film is abnormal.

45. Does sarcoidosis cause a lot of anxiety and insomnia?

Any illness, particularly in individuals who were previously healthy, can cause anxiety and insomnia. Furthermore, anx-

iety may be related to lack of information about the disease.

46. To what do you attribute the high number of African-Americans with sarcoidosis and the fact

that their disease is usually more severe than other ethnic groups?

We do not know the reason. Hypertension and diabetes are other diseases that are progressive in African-Americans

patients. Perhaps, yet unknown genetic or hereditary factors play a role.

47. Does sarcoidosis affect person's sleeping pattern?

Only if the patient has enlarged tonsils and upper airway granulomas. In a sarcoidosis patient the presence of obesi-

ty might be the cause of sleep apnea and related breathing abnormalities. Rarely, hypothalamic involvement may

cause sleep disturbances.

48. How often is sarcoidosis found in children?

Sarcoidosis is rare in children. Only 2 to 3% of sarcoidosis are below the age of 10 years.

49. How does one know the stage of sarcoidosis?

These stages are based on the appearance of a chest roentgenogram.

50. My father died of miliary tuberculosis. My mother had lupus; my brother had

tuberculosis. I have sarcoidosis. Are these diseases related?

Tuberculosis, sarcoidosis, and lupus erythematosus are not causally related. However, occasionally, a patient may

develop two or all three diseases.

51. What part does stress play in relapse of sarcoidosis occurrence?

Stress does not cause sarcoidosis, but stress can increase the misery caused by the disease.

52. How does sarcoidosis affect the mental attitude of the patient?

Any chronic illness will have an effect on mental attitude. Individuals become frustrated, tired and depressed.

53. Is chronic low grade fever (99.4) typical of sarcoidosis? Should any medicines be taken to

reduce fever?

Any type of fever is unusual in sarcoidosis. Fever may occur in sarcoidosis along with night sweats, chills and

high fevers. But, every attempt should be made to exclude infections and lymphoma that commonly

cause fever.

54. Is the reappearance of nodules or bumps on arms, ears, and legs a sign of sarcoidosis

recurrence or flare up?

Reappearance of skin lesions indicates flare up of sarcoidosis.

Once a year.

56. How often should bone density be checked?

If you are on high dose prednisone, check bone density frequently, say every 3-6 months.

Anyone can get sarcoidosis. The disease occurs throughout the world. Although it is more frequent in some parts of

the world and less common in others, no race, sex or age group is excluded from the disease.

58. Why do we get sarcoidosis?

We do not know why some people get sarcoidosis and others do not. The best that can be said about sarcoidosis

at our present stage of knowledge is that when a susceptible host meets an agent which enters the body,

most likely by inhalation, sarcoidosis results.

59. Are there any other ways I can help myself?

You should follow sensible health measures. Do not smoke and do not drink excessively. Avoid drugs or chemicals

injurious to your liver. Also, avoid exposure to toxic inhalants, dust, fumes, gases and chemicals that can injure

your lungs.

60. Do I have to get rid of my pets?

No. You do not have to get rid of cats, dogs, horses or other pets if you have sarcoidosis.

61. Does the disease run in families? Will my children get it?

There are a few families where sarcoidosis has affected more than one member of the family. In general, you need

not worry about transmitting the disease to your children. However, much research is still being done on this topic.

62. Will sarcoidosis affect my life style?

Most of the patients with sarcoidosis lead normal lives. They carry on usual social, intellectual, artistic and athletic

activities. Sarcoidosis, unless severe and progressive, will not interfere with your life style, nor should it interfere

with the achievement of your goals.

63. Will sarcoidosis affect my pregnancy?

Sarcoidosis should not interfere with pregnancy. It does not affect the unborn baby. Many women with sarcoidosis

improve during pregnancy because their bodies are producing more corticosteroids. However, your doctor will

check your chest x-ray three months after delivery to monitor possible recurrence of the disease.

About one in ten patients with sarcoidosis has high blood calcium levels. If your calcium level is high,

avoid calcium rich substances such as milk, cheese, and any vitamins containing calcium, Also, avoid direct

sunshine and vitamin D if your calcium level is high.

65. Should I take vitamin supplements?

Be careful about taking calcium supplements and vitamin D if you have sarcoidosis, but other vitamins are harm-

less. Vitamin therapy is not indicated in the treatment of sarcoidosis, but unless you are taking excessively high

doses of any vitamins, you can continue your supplements. Do check with your doctor, however, before

continuing with very high doses of vitamins.

66.Should I restrict my exercise?

If your lungs cannot keep up with you and you feel out of breath, you should stop and rest. But do not restrict your

activities just because you have sarcoidosis.

67. Will smoking affect my disease?

Smoking does not cause sarcoidosis, but if you have lung disease due to sarcoidosis, then smoking may worsen

your breathlessness by adding new injury to your breathing tubes in the form of bronchitis or emphysema. You

should be aware that any lung disease can be further compromised by smoking. If you smoke, and you have

sarcoidosis, this is a good time to help your lungs by quitting your habit.

68. Will drinking affect my disease?

Moderate social drinking has no effect on sarcoidosis.

69. Will having sarcoidosis affect my sex life?

Only if you have sarcoidosis of the nervous or endocrine system, might you experience impotence.

This feature is rare.

Only those patients who have extensive fibrosis of the lungs may need supplemental oxygen.

In that case, your doctor will measure your oxygen content and advise accordingly.

71. Is it true that prednisone does not change the course of the progression of the disease, it

only suppresses symptoms?

Prednisone suppresses granulomatous inflammation due to sarcoidosis. In some patients, sarcoidosis

subsides while other patients might need prednisone for a long time.

73. What is the treatment for a patient who has enlarged lymph nodes and involvement of the

lungs, spleen, and liver. The patient also has diabetes mellitus?

Although prednisone would be an ideal drug, in this case the presence of diabetes mellitus is contraindicated.

Hydroxychloroquine and methotrexate should be tried.

74. What is the best treatment for neurosarcoidosis?

At least 10% of all patients with sarcoidosis have neurosarcoidosis. Prednisone, hydroxychloroquine, methotrexate,

azathioprine, cyclophosphamide and radiation have been tried in varying dosages.

75. How long should prednisone be taken? Are there any tests to check on toxic levels?

As long as it is needed to control effects of sarcoidosis. There is no blood test to assess toxic levels of steroids.

76. How does one know if the adrenal glands are still producing corticosteroids?

By measuring blood cortisol levels and performing a challenge test.

77. If my calcium levels are in the normal range and I'm taking prednisone, should I be taking

If your nutrition is inadequate and if you are a woman in menopausal years, you should take a calcium supplement.

78. Is plastic surgery the right treatment for my skin lesions?

The most troublesome skin lesions are slowly developing reddish-blue patches (plaques) and scarred areas that occur

on the face. Most of these rashes can be brought under control by corticosteroids and chloroquine, and methotrex-

ate. Plastic surgery is rarely needed. The risk is that some sarcoidosis patients will develop raised, disfiguring scars

(keloids) after surgery. You will need to discuss the pros and cons of plastic surgery with a sarcoidosis specialist

before undergoing the surgery.

79. What are the side effects of corticosteroids?

Corticosteroids have many side effects; some are disabling. Your doctor will discuss the effect of these

drugs. Common side effects include excessive weight gain, acne, diabetes in susceptible people, high blood

pressure, glaucoma, cataracts, thinning of the bone (osteoporosis) and psychological symptoms.

80. What are the side effects of the other drugs?

Chloroquine does not have the same side effects as corticosteroids. However, if given for a long period of time it

may cause damage to the eyes. Hydroxychloroquine does not have many side effects. Immunosuppressive drugs

have more serious side effects such as increased susceptibility to infections, anemia, and suppression of the body's

ability to fight disease.

81. I will start chemotherapy and radiation for uterine cancer. Will this affect my active

pulmonary sarcoidosis? How?

Chemotherapy, particularly methotrexate, chlorambucil and azathioprine are used in treating sarcoidosis patients

when prednisone fails to control the disease or produces too many side effects. It is conceivable that your

sarcoidosis may indeed improve during the chemotherapeutic treatment.

82. When I'm off steroids, my doctor tells me that I could take up to 12 Advil per day. Is the

drug of any value in treating sarcoid?

Advil is good for pain. It is a nonspecific analgesic and anti-inflammatory drug used in controlling joint pains.

It is not used to treat sarcoidosis.

83. Has acupuncture any therapeutic value in managing sarcoidosis?

Acupuncture does not cure sarcoidosis. If a patient with sarcoidosis has muscle aches and pains, acupuncture may

be of help.

84. Is deflazacort being used in this country? Besides being "bone sparing", is deflazacort

better than prednisone?

Prednisone, cortisone, triamcinolone, hydrocortisone and deflazacort are all corticosteroids.

85. Is hypertension a side effect of long term therapy of sarcoidosis with prednisone and

Prednisone causes salt retention and may cause hypertension. Immuran does not cause an increase in

blood pressure.

86. Do corticosteroids cause sterility and liver damage?

Corticosteroids cause weight gain, acne, osteoporosis, hypertension, diabetes mellitus in susceptible individual,

depression and suicidal tendencies, cataract, skin bruising, and infections. There are many other side effects and the

patients should always discuss with his doctor. Prednisone does not cause either sterility or liver damage.

87. What should be done to help fatigue of sarcoidosis?

Fatigue in sarcoidosis is common. It is perhaps related to its cause; some patients respond to prednisone and

hydroxychloroquine.

88. Would physical therapy be helpful in treating joint inflammation and muscle involvement?

Yes, physical therapy along with analgesics and corticosteroids is very helpful in managing joint involvement.

89. What is the best treatment for sarcoidosis of the bones and bone marrow?

Prednisone with hydroxychloroquine is an effective treatment.

First, the physician will have to reevaluate the nature of sarcoidosis. If the lungs are completely scarred

no medication will be effective. If the disease is active, explore the possibility of giving her hydroxychloroquine 200 mg BID.

91. Are there any preventative measures that may be taken to avoid seasonal relapses?

Sarcoidosis, unlike hay fever, asthma and other allergic diseases, has no definite seasonal exacerbations.

92. What is a gallium lung scan?

The test is done by injecting a radioactive substance gallium-67 into one of your veins. The gallium then is picked

up by the organs affected by sarcoidosis and other inflammations. Two days after, the body is scanned and pictures

are obtained to see the extent and severity of sarcoidosis. The test is not routinely performed in every patient.

Discuss this with your doctor.

93. What is bronchoalveolor lavage?

A bronchoscope is a long, narrow tube with a light at the end. It is used to examine the breathing tubes and the

lungs. It is also used to collect fluid from the lungs. This fluid is examined for various cells and substances that

reflect the inflammation and immune changes in the lungs. This process is referred to as bronchoalveolar

lavage (BAL}.

95. How often a sarcoidosis patient should have a TB test and a Gallium Scan?

Gallium is performed to study the extent and activity of sarcoidosis. It may be used to assess the response of the

disease to treatment. A tuberculin (TB) test is performed initially when the sarcoidosis patient is investigated in

order to exclude tuberculosis.

96. I have never had a gallium scan, should I?

No, not if you do not have any symptoms and your physician does not feel a need for the test.

97. When is a mediastinoscopy indicated?

If a patient has enlarged glands in the mediastinum and the chest, and the diagnosis has not been established by

transbronchial lung biopsy, then a mediastinoscopy is indicated.

98. What tests are there for predicting disease activity in sarcoidosis?

Chest x-ray film, lung function tests, serum angiotensin converting enzyme, serum calcium and Gallium-67 scan

and lymphocytes in bronchoalveolar lavage are some of the tests used to assess activity.

99. How useful is the serum angiotensin converting enzyme (SACE) test?

Serum ACE level is high is about 60% of the patients with active sarcoidosis. ACE level comes down when the

disease undergoes remission or responds to treatment. There are other conditions that also may have high

ACE. Levels.

100. What is the single most specific test to diagnose sarcoidosis?

The best way to diagnose sarcoidosis is to obtain a tissue biopsy and demonstrate the presence of noncaseating gran-

ulomas, excluding any other causes of the granulomatous reaction including tuberculosis, histoplasmosis,

coccidioidomycosis, and berylliosis.

101. If a person does not have sarcoidosis and is injected with the Kveim antigen, is there any concern

that this person could later develop sarcoidosis?

No, to date there is no such case report.

102. Is Kveim-Siltzbach lest FDA approved? In this day and age of AIDS is the test safe?

Kveim-Siltzbach is not approved by the FDA. The test is safe, however.

103. What medicines are used in the treatment of sarcoidosis?

The most commonly used group of drugs is corticosteroids (cortisone, prednisone, methylprednisolone). However,

many physicians use chloroquine and hydroxychloroquine (used in the treatment of malaria) and immunosuppressive

drugs (methotrexate, azathioprine, cyclophosphamide, chlorambucil). Many drugs, are not approved by the FDA

in the treatment of sarcoidosis.

104. How do I know if my disease warrants corticosteroids (prednisone, cortisone) treatment?

Your physician in consultation with a sarcoidosis specialist will determine the extent and severity of sarcoidosis and

advise accordingly. In general, severe shortness of breath, irregular heart rate, red eyes and nervous system involve-

ment warrant treatment with corticosteroids.

105. If one is travelling overseas, what inoculations, if any, should be taken?

You do not need any special inoculations because of your sarcoidosis.

106. Who is the best physician to take care of my illness?

Sarcoidosis is best controlled by a doctor whose special interest is sarcoidosis. Since the lungs are the most

frequently affected organs, a lung specialist is often the physician who treats sarcoidosis patients. There are many

sarcoidosis specialists, most of them at major medical

107. Where can I read more about sarcoidosis?

Your local chapter of the American Lung Association will help you with sarcoidosis literature or provide you with

sarcoidosis specialist in your area who will be happy to send you more information.

108. If I travel to Europe, Asia, Canada or any other country, would I be able to find a

sarcoidosis specialist in case of emergency?

Yes. For the addresses, write to your local sarcoidosis support group. Several sarcoidosis support groups exist

in the US, UK, and Europe.