11. What is the effect of the disease on
bones and joints?
Pain in joints is usually the only symptom. Unlike some forms of
arthritis, bone and joint sarcoidosis does not cause crippling joint
disease. Sarcoid bone lesions are painless and are usually discovered
on bone scans.
12. How common is sarcoidosis of the heart
and what are its effects?
Sarcoidosis of the heart is a serious complication of sarcoidosis.
Symptomatic cardiac sarcoidosis occurs in about 5% of sarcoidosis
patients. Complete heart block or heart rate below 40 beats per
minute, palpitation, irregular heart rhythm, dizziness and syncope
are some of the major symptoms, but many sarcoidosis patients
with heart involvement are symptom free. When extensive thickening
of the heart muscle with granulomas and scarring occur, heart failure
and sudden death can result.
13. What is the incidence of ventricular
In a necropsy study aneurysms were found in 9 out of 86 subjects.
Ventricular aneurysms without evidence of coronary artery disease
have been described in sarcoidosis.
14. How is sarcoidosis of the heart diagnosed?
Coronary angiography is usually normal, but when granulomatous
vasculitis is present then the evidence of thrombosis and aneurysm
can be observed. MRI has a sensitivity of 100% and specificity of
78% for the diagnosis of sarcoidosis. Late mycocardial enhancement
is typical, but various patterns of injury have been described.
15. Can abdominal pain occur in sarcoidosis?
Abdominal pain is an unusual symptom in sarcoidosis patients. When
it occurs it is attributed to pancreatitis due to hypercalcemia,
as well as to enlarged liver or spleen. A few cases of peritoneal
sarcoidosis have been described. A laparoscopic peritoneal-omental
biopsy will show non-caseating granulomas.
16. What is the effect of sarcoidosis on
the nervous system?
Tingling, numbness, and 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, muscle
weakness, paralysis of limbs, difficulty in swallowing, dizziness
17. How do I know if my sarcoidosis is serious?
If your lungs have been badly scarred, and if your sarcoidosis
involves the heart, eyes, central nervous system or kidneys, then
your disease is complicated and you will need treatment by a sarcoidosis
specialist. If, however, sarcoidosis has only affected the glands
in your lungs, it is probable that your disease will remain harmless.
18. Is the disease contagious?
Sarcoidosis is not contagious.
19. Is my skin rash contagious?
Skin lesions are not contagious. In some patients the skin rash
of sarcoidosis may look unsightly, but there is no need to worry
about infecting another person.
20. Is sarcoidosis a form of lung cancer?
Sarcoidosis is not related to lung cancer or any other type of
cancer or lymphoma.
21. 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.
Occasionally sarcoidosis may occur in a patient with H IV infection.
22. Is sarcoidosis a form of Hodgkin's disease?
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.
23. Does sarcoidosis cause diabetes?
No. Sarcoidosis does not cause diabetes, but prednisone, used for
treating sarcoidosis, may cause diabetes in those patients who are
predisposed to develop diabetes.
24. Is sarcoidosis an allergic disease?
Sarcoidosis is not caused by any known allergic substances including
pollens, grasses, fish, mites, or other animal and vegetable
25. Can sarcoidosis develop into asthma?
Asthma is an allergic lung disease. Some patients with sarcoidosis
may have allergies and asthma, but sarcoidosis does not develop
26. Can sarcoidosis develop into emphysema?
Although sarcoidosis causes lung destruction, it does not cause
emphysema which is caused by smoking.
27. Could my sudden shortness of breath prove
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. Lung collapse or blood clot in the
lung may cause sudden shortness of breath. It is important to see
your doctor promptly should you develop sudden shortness of breath.
28. Sometimes I feel tired. Can sarcoidosis
Patients with badly scarred lungs, heart or muscle involvement
may complain of tiredness, fatigue or lethargy. This is due to lack
of oxygen and increased work of breathing. Sarcoidosis may also
cause symptoms similar to Chronic Fatigue Syndrome (CFS).
29. 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
30. What is cor-pulmonale? How is it treated?
Long term pulmonary involvement (fibrosis/scarring) causes failure
of the right side of the heart called cor pulmonale. It is due to
the lack of oxygen. These patients may also have pulmonary hypertension.
You need to be on oxygen if your oxygen is low. Prednisone, chloroquine
or hydroxychloroquine and methotrexate are the drugs used to treat
chronic lung sarcoidosis.
31. 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
Back pain may be due to enlargement of the glands (hilar) in the
chest, muscle spasm, arthritis in the spine, involvement of the
nerves supplying the torso or even osteoporosis related to prednisone.
The pain you describe is seen frequently in overweight patients
who have been on prednisone for a long time. In overweight patients
gastro-esophageal reflux (GERD) can also cause such non-specific
pains. In some cases pain in the chest may be due to the involvement
of the lung lining or pleura. The persistent back pain requires
32. In multi-system sarcoidosis, what is
the worse case possible?
In pulmonary sarcoidosis progressive scarring of the lungs and
respiratory failure requiring lung transplant are serious. When
sarcoidosis involves the heart, eyes, brain and kidneys the disease
is severe, but prompt and appropriate treatment often improves prognosis.
33. 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?
Kidneys are not commonly affected by sarcoidosis. However, if a
patient with sarcoidosis develops granuloma in the kidney, the renal
inflammation is likely is due to sarcoidosis. On the other hand,
if kidneys are the only organs that show granulomas and the patient
does not have multi-system sarcoidosis, then other causes of kidney
disease need to be excluded.
34. Has any geologic element or mineral been
implicated as a possible agent causing sarcoidosis?
Multi-system sarcoidosis is not caused by any element, but granulomatous
disease of the lung and skin may be caused by beryllium. The disease
is called berylliosis. Zirconium (used in deodorants) can cause
granulomas in the skin, but it does not cause not systemic sarcoidosis.
35. Could "red and watery eyes"
be a symptom of diseases other than those due to allergy?
"Red and watery" eyes particularly associated with light
sensitivity is a feature of acute sarcoidosis. Similar findings
may also occur in autoimmune diseases and local eye inflammation.
36. Are there areas in the US where sarcoidosis
is more 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 effective treatment of sarcoidosis.
The National Institutes of Health strongly supports sarcoidosis
research. A recent study of 59,000 black women who participated
in the Black Women's Health Study, showed high incidence and prevalence
of sarcoidosis amongst black women. They also had more sarcoidosis
of the organs other than the lungs, Their disease required long
37. 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. Its cause is
not known, Most of the patients respond to corticosteroids and anti-tumor
necrosis factor agents.
38. What is the relationship between Raynaud's
syndrome and sarcoidosis?
There is no relationship between Raynaud's syndrome and sarcoidosis,
Raynaud's phenomenon or sensitivity to cold occurs in patients with
scleroderma and other autoimmune diseases. Occasionally, it can
occur in a sarcoid patient, but it is not a diagnostic feature.
39. Can sarcoidosis cause progressive arthritis?
Joints are infrequently affected in sarcoidosis; severe, disabling
arthritis is rare.
40. Do patients with sarcoidosis have left
Not specifically. Left sided chest pain particularly with exercise
is due to coronary artery disease. Chest pain may occur in patients
who have enlarged hilar or mediastinal glands and in patients with
sarcoidosis who have peripheral nerve involvement. If sarcoidosis
patient develops sudden severe pain, he/she needs to see a doctor
to exclude pneumothorax (air in the pleural cavity) and a blood
clot in the lung.
41. Are other rheumatological diseases associated
Infrequently, sarcoidosis may coexist with rheumatoid arthritis,
scleroderma or lupus erythematosus.
42. Are some countries or populations more
prone to sarcoidosis?
Sarcoidosis is 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. In black women sarcoidosis
has an average annual incidence rate of 71/100,000.
43. 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.
44. 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.
45. 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 an inflammatory lesion and consists of epithelioid
cells, lymphocytes, and giant cells. There are many causes of granuloma
formation. In some cases with active sarcoidosis, old injuries and
scars light up, become tender and firm, and on biopsy show sarcoid
granulomas. This can happen in the patients who are prone to developing
46. When the "eye lesions" flare-up.
what actually causes so much pain?
Inflammation of the conjunctiva, cornea and uveal tract causes
redness, pain, and light sensitivity.
47. 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 is
a common symptom and occurs in chronic bronchitis, emphysema, asthma,
pneumonia, tuberculosis, heart failure and, in some patients with
sarcoidosis, Tuberculosis patients may have cough, but every patient
who has cough does not necessarily have tuberculosis.
48. Is it common for sarcoidosis to first
appear in the lungs?
Yes, Sarcoidosis commonly involves the lungs. I n more than 90%
of the patient's chest x-ray film is abnormal.
49. Does sarcoidosis cause a lot of anxiety
Any illness, particularly in individuals who were previously healthy,
can cause anxiety and insomnia. Furthermore, anxiety may be related
to lack of information about the disease. Prednisone can cause anxiety,
insomnia, and irritability. Anxiety and insomnia are not symptoms
50. 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, but it is related to genetic makeup.
In African-Americans the liver, spleen, lymph nodes and skin are
more frequently involved. Hypertension and diabetes are other diseases
that are progressive and troublesome in African Americans patients.
Heart and eye involvement is more common in the Japanese patients.
Erythema nodosum is seen more frequently in Scandinavian patients.
Research is being done to explore genetic susceptibility in sarcoidosis.
51. Does sarcoidosis affect person's sleeping
Sarcoidosis is associated with sleep apnea syndrome, particularly
if the patient has enlarged tonsils and upper airway granulomas.
In other patients obesity causes sleep apnea and related breathing
abnormalities. Rarely, hypothalamic involvement in the brain may
cause sleep disturbances. Sleeping patterns may also be changed
due chronic fatigue in some patients with sarcoidosis.
52. How often is sarcoidosis found in children
Sarcoidosis is rare in children. Only 2 to 3% of sarcoidosis patients
are below the age of 10 years.
53. How does one know the stage of sarcoidosis?
Stages of sarcoidosis describe the chest x-ray abnormality: Stage
I disease has only enlarged hilar and mediastinal lymph nodes (these
gland sit outside the lungs); Stage II disease has enlarged lymph
glands as seen in Stage I disease, but it also has inflammation
in the lung tissue commonly called lung infiltrates, nodules, spots
or patches of the disease; Stage III has only lung infiltrates and
fibrosis (scarring of the lung); Stage IV has lung destruction and
54. 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 any two or
all three diseases. In your case with such a strong family history
of tuberculosis, your doctor should do all appropriate tests to
make sure that you do not have tuberculosis. Occasionally, it can
be difficult to differentiate between sarcoidosis and tuberculosis,
particularly in those patients who come from areas of high tuberculosis
55. What part does stress play in relapse
of sarcoidosis occurrence?
Stress can increase the misery caused by the disease.
56. How does sarcoidosis affect the mental
attitude of the patient?
Any chronic illness can affect mental health. Individuals become
frustrated, tired and depressed. Sarcoidosis can affect the central'
nervous system, but severe psychological and psychiatric symptoms
are not caused by sarcoidosis.
57. 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, although it may occur
along with night sweats, chills and high fevers. But every attempt
should be made to exclude infections, particularly tuberculosis,
and lymphoma that cause fever.
58. Is the reappearance of nodules
or bumps on arms, ears. and legs a sign of sarcoidosis recurrence
or flare up?
Reappearance of skin lesions in a sarcoidosis patient indicates
flare-up or recurrence.
59. If a person is in remission. how often
should he get a lung function study and chest x-ray film?
Once a year.
60. How often should bone density be checked?
If you are on high dose prednisone, check bone density every 6
61. Can joint pain and swelling last for
an indefinite period?
Yes, in a small number of the patients, mild joint pains, muscle
aches, and stiffness may last for a long time. Deforming joint disease
is uncommon in sarcoidosis.
62. Sarcoidosis is found more frequently
in African-American patients. As a member of this group what can
I do to prevent the progression of the illness?
Since the cause is not known, one can do little to prevent the
illness. In African-American patients, the disease tends to be chronic
and responds moderately to treatment. It is important for you to
find a sarcoidosis specialist who has seen a great deal of sarcoidosis.
A combination of various drugs that are commonly used can keep sarcoidosis
under control for decades.
63. Can you have sarcoidosis in other organs
but the chest x-ray may be normal.
Yes, in ten percent of sarcoidosis patients the chest x-ray film
may be normal. These patients may have skin, heart, brain, bones,
or joint disease. It is also possible to have sarcoidosis in the
lung without it showing up on your chest x-ray film. In such cases
a high resolution computerized tomography (HRCT) examination of
the chest is indicated.
64. Is lung collapse a common occurrence
Lung collapse or pneumothorax occurs in less than 2% of the patients.
These patients usually have advanced lung scarring.
65. What is a "local sarcoid reaction"?
It is the presence of granuloma in one tissue or part of the body
without any evidence of sarcoidosis in the rest of the body. Any
local injury involving a foreign body can produce a granulomatous
reaction e.g., tattoos may develop granulomatous response to various
inks and dyes used.