Sarcoidosis, also know as sarcoid, is a non-contagious auto-immune disease which causes inflammation and possible scarring of the body's tissues. Sarcoidosis may affect any organ or system within the body including the eyes, skin, bones and spleen.
Sarcoidosis often starts in either the lungs or the lymph nodes (small organs of the immune system). The inflammation causes granulomas - small lumps in the tissue. For example, small raised patches on the face are a sign that the skin may be affected.
The musculoskeletal system can be affected by sarcoidosis. Sarcoidosis can cause muscle pain or muscle weakness. In the joints, sarcoidosis can lead to a granulomatous form of arthritis. Sarcoidosis can also cause painless holes and swelling in the bones.
The onset of sarcoidosis is usually gradual - sarcoidosis symptoms normally develop later and many patients exhibit no symptoms at all.
Sarcoidosis is more common in women than men, and more common in adults between 20 and 40 years of age.
Acute Sarcoidosis - about 75 percent of patients have the acute form of sarcoidosis.
About half of these have no long term damage or significant problems. Sarcoidosis is often a mild condition with no permanent damage to the body's tissue.
Chronic Sarcoidosis - about 25 percent of patients develop chronic sarcoidosis.
Sarcoidosis can be present for years causing organ and system damage whilst reducing the patients physical activity. Scarring of the tissue in the lungs, skin eyes or other organs is common.
A number of tests can be used when diagnosing sarcoidosis. A physical examination of the patient may show sarcoidosis symptoms such as swollen lymph nodes, redness in the eyes and red bumps on the skin.
Other methods for diagnosing sarcoidosis include:
Chest X Ray
Pulmonary Function Test
Blood Test
Fiber optic Bronchoscopy
CT Scan
MR Scan
Eye Test
Bronchoalveolar Lavage
Thallium & Gallium Scans
Many patients receive no treatment for sarcoidosis -in up to 60 percent of cases treatment is not needed. When treatment is required it is usually for chronic sarcoidosis which is affecting critical organs such as the lungs, eyes or heart.
Drugs used to treat sarcoidosis include:
Prednisone
Hydroxychloroquine
Methotrexate
Cyclophosphamide
Azathioprine
For sarcoidosis patients, the chances of recovering from this disease is good.
Note: - sarcoidosis can cause other conditions such as hypercalcemia (high blood calcium levels ) and hypercalciura (high urine calcium levels). These conditions can lead to kidney stones.
Contents
- General Symptoms
- Sarcoidosis - Tests Used For Diagnosis
- Incidence of People with Sarcoidosis
- Treating Sarcoidosis
- Sarcoidosis: Frequently Asked Questions
- Sarcoidosis on Amazon
- Sarcoidosis Photos on Flickr
- YouTube vids on Sarcoidosis
- Sources on Sarcoidosis
- Blog Posts from Google
- Featured Lenses
- Let me know you were here...
General Symptoms
Sarcoidosis symptoms can be specific to the affected organ or system.
General symptoms of sarcoidosis include:
Fever
Fatigue, tiredness, weakness
Sweating whilst sleeping
Feeling sick
Loss of appetite or weight
In the many cases a patient may show or experience no symptoms of sarcoidosis.
Sarcoidosis: Organ Specific Symptoms
Lung Symptoms
The lungs are an organ most commonly affected by sarcoidosis - symptoms include:
coughing
wheezing
shortness of breath
chest pain (not common)
When the lungs are affected chest x rays are often used to help diagnose sarcoidosis.
Lymph Nodes
Lymph nodes are part of the body's immune system. Lymph nodes are usually present in clusters in the armpits, either side of the neck, chin and in the groin. Lymph nodes in the neck are commonly affected. When affected by sarcoidosis, lymph nodes may appear as swollen lumps.
Eye Symptoms
Eye symptoms include:
photophobia - sensitivity to light
dryness - occurs if tear ducts & glands are affected
blurred vision
red eye
burning & itching
pain
'floaters' - seeing black spots
A third of patients diagnosed with sarcoidosis will have their eyes affected by this disease. People with sarcoidosis should see an eye doctor. On rare occasions sarcoidosis of the eyes may lead to permanent eye damage and even blindness.
Skin Symptoms
These include skin rash & lesions. Skin lesions occur in about 10-35 percent of people with sarcoidosis.
Erythema nodosum lesions - in the form of painful, slightly raised bumps commonly found on the skin of the ankle & shins. There may also be a fever & swollen ankles.
Erythema nodosum lesions do not contain granulomas. Usually of short-term
duration - weeks to months.
Specific skin lesions - can be in the form of bumps, ulcers or flat areas of discolored skin. They may itch but aren't usually painful. The head area (nose,eyes,scalp), back, arms and legs are commonly affected. Of a longer duration - months to years.
Lupus pernio lesions - affects the nose causing disfiguring lesions. Often reoccurs even after treatment.
Liver Symptoms
The liver is an organ commonly affected by sarcoidosis - granulomas (bumps in the skin) often form in the liver. Permanent damage to the liver is rare. Liver symptoms include:
fatigue
fever
itching
pain in the upper right part of the abdomen
Heart Symptoms
Sarcoidosis can affect the heart - for reasons unknown it most often occurs in Japanese people. Sarcoidosis can cause the heart to pump weakly indicated by:
a shortness of breath
swelling of the legs
wheezing
coughing
Sarcoidosis can also affect the hearts pacing & transmissions systems indicated by:
the heart beating too fast or too slowly
'skipped beats' - irregular and longer duration between beats
palpitations - series of rapid heartbeats in quick succession
fluid buildup in the lungs - rare
sudden loss of consciousness - rare
Musculoskeletal System & Other Affected Areas
Musculoskeletal System - Sarcoidosis Symptoms
Sarcoidosis in the bones
Sarcoidosis can cause painless holes in bones.
Bone marrow can also be affected by sarcoidosis causing anemia - a condition in which there are too few red blood cells or a lowered number of white blood cells.
Sarcoidosis in the joints
If a person affected by sarcoidosis has erythema nodosum skin lesions, they may develop arthritis in the ankles. This form of arthritis is usually short-term clearing up after several weeks.
Granulomatous arthritis is a chronic but rare form of arthritis which can also arise through sarcoidosis. Granulomatous arthritis requires treatment and can last for months or years.
Sarcoidosis in the muscles
Sarcoidosis can cause painless swelling which often affects the fingers.
Nervous System
Sarcoidosis in the brain
The nervous system is the integrated system of nerve tissue in the body. This includes the brain spinal cord and all the body's nerves. Sarcoidosis can affect the nervous system causing a mass of granulomas in brain or meninges (membranes which cover the brain).
A mass of granulomas in the brain can lead to the following symptoms:
headaches
visual problems
weakness or numbness of an arm or leg
coma - a rare occurrence
Sarcoidosis in the nerves & spinal cord
Sarcoidosis can affect individual & multiple nerves. When multiple nerves in more than one location are affected the following symptoms can arise:
weakness
pain
a 'stinging needles' sensation in the affected area
nerves of the face are part of the nervous section often affected by sarcoidosis. It can cause one side of the face to droop - usually a sign that sarcoidosis is present.
Sarcoidosis can also affect the spinal cord which can cause weakness and paralysis of the arms and legs.
Other Systems & Areas - Sarcoidosis Symptoms
Salivary glands
The salivary glands include the parotid gland - the largest of the salivary glands which is located in front and below the ear and behind the jaw bone. Sarcoidosis can affect the parotid gland causing them to swell, making the cheeks enlarged. The mouth and throat can also become dry.
Blood, urinary tract & kidneys
A high blood and urine calcium level can be another symptom of sarcoidosis.
Granulomas release an enzyme which produces calcium. High calcium levels can then lead to kidney stones as urine is passed through the kidneys.
Spleen
Sarcoidosis can affect the spleen causing a reduction in the numbers of red or white blood cells or platelets. The spleen may also become enlarged.
Sinuses
Sinuses are air cavities within the facial bones of the skull and can be affected by sarcoidosis. A symptom is sinusitis - inflammation of the sinus cavities.
Sarcoidosis - Tests Used For Diagnosis
Overview - Diagnosing Sarcoidosis
In many cases a doctor will perform a physical examination and review a patients medical history. Additional tests usually include blood tests, chest x ray and breathing tests. Many people displaying sarcoidosis symptoms are referred by their doctor to a pulmonologist (lung physician) - the lungs are an organ often affected by sarcoidosis.
Despite the number of tests which can be used a biopsy is the only reliable method when diagnosing sarcoidosis. A biopsy is a test which uses a sample of tissue taken from the affected area. The tissue is then tested for a disease. As sarcoidosis is a disease which affects the whole body, not just one organ, a tissue sample is usually taken from an accessible area of the body. Simple skin or conjunctival biopsy samples are normally taken under local anesthetic in a doctors surgery - the conjunctiva is a membrane which lines the eyelids inner surface.
Sarcoidosis Tests & Procedures
The tests and procedures below help diagnose sarcoidosis - they can also be used to assess and monitor the disease during and after treatment.
Physical Examination
Usually performed by the patients regular doctor who will look for external sarcoidosis symptoms.
These include:
red bumps on the skin
redness in the eyes
swollen lymph nodes
The doctor will look for other possible causes of these symptoms during the examination.
Blood Tests
Blood tests are used to measure the blood levels of proteins such as ACE (angiotensin converting enzyme). ACE is made by the cells in the granulomas. However, elevated or high levels of blood ACE does not always indicate sarcoidosis - other tests to diagnose sarcoidosise are also used.
Blood tests may also show elevated calcium levels and abnormalities in the liver, kidneys and bone marrow (organs which can be affected by sarcoidosis).
Chest X Ray
Chest x rays are frequently used to test for sarcoidosis and present a safe and easy method. Granulomas may appear as a shadow on an x ray. A chest x ray may also show enlarged lymph glands. Granulomas & enlarged lymph glands are both symptoms of sarcoidosis
Pulmonary Function Tests
Like x rays, pulmonary function tests are safe and easy to perform.
Pulmonary function tests can include:
using a spirometer - a spirometer is a device which measures the rate and volume a person can blow out after taking a deep breath. Sarcoidosis can scar and/or inflame the tissue of the lungs affecting performance on this test.
measuring lung volume - sarcoidosis can contract or shrink the lungs, lowering the lungs volume & affecting their capacity to hold air.
measuring diffusing capacity - the efficiency of gas moving from the lungs into the bloodstream can be affected. Sarcoidosis can make it harder for oxygen to enter the bloodstream.
Fiber Optic Bronchoscopy
A fiber optic bronchoscope is a slender tubular instrument used to examine the bronchial tubes. A flexible tube passes light through a fibre optic cable. The tube is
inserted into the airway of the lung allowing a doctor to inspect the tissue lining.
Fiber Optic Bronchoscopy Biopsy
A bronchoscope can also be used to take small samples of lung tissue & 'lung washings' (which contain lung cells) from parts of the lungs.
Bronchoalveolar Lavage (BAL)
A saline solution (salt water) is injected into the lung. The fluid is removed using the suction action from a fibre optic bronchoscope. The fluid is then analyzed for washed out cells and other materials from alveoli (tiny air sacs) of the lung. The pulmonary inflammation (a symptom of sarcoidosis) begins in the alveoli so washed out cells from this area can indicate sarcoidosis of the lungs.
Scans & Other Procedures
CT Scan
Computed tomographic scans (CT scans) can provide a more detailed image of an affected area compared to an x ray. Multiple x ray images are taken and assimilated using a computer to form a 2d cross sectional image. CT scans are a non-invasive tool. However, they are not often used to diagnose sarcoidosis as they subject a person to higher levels of radiation compared to x ray. CT scanners are also expensive. CT scans are more likely to be used to assess tissue damage to specific areas not easily accessible for biopsy such as the spinal cord, nerves and the brain.
MRI Scan
Magnetic resonance imaging (MRI) is a non-invasive procedure which uses powerful magnets and radio waves to see inside the body. MRI provides an unparalleled view inside the body and can show the symptoms of sarcoidosis in the organs including inflammation and scarring of tissue. MRI is a safe procedure with no known hazards.
Thallium & Gallium Scans
Thallium & gallium are radioactive elements which can be put into the body and their movements 'traced'. These 'tracers' are usually injected into the body - the body is then scanned at a specified time after injection. Thallium & gallium can collect in areas of inflammation which indicates the possibility of sarcoidosis in the body.
Inflammation could be caused by another disease so other tests such be used for a more definite diagnosis.
Eye Test
People diagnosed with sarcoidosis should be referred to an eye doctor (ophthalmologist). An eye test can help monitor the disease even if no symptoms are present in the eye.
People with sarcoidosis may be prescribed a drug known as Plaquenil (hydroxychloroquine) to treat sarcoidosis. Side effects of this drug can affect vision so eyes should be tested periodically.
Incidence of People with Sarcoidosis
Dr Hutchinson treated a patient who had "multiple, raised, dusty-red patches on his feet, fingers, and arm". Overtime Dr Hutchinson saw more patients with similar symptoms. In many cases patches and lumps on the skin were shown in the skin, eyes or other organs. Despite different organs being affected across a range of patients, each patient had only one affected organ. Later discoveries showed that sarcoidosis involved the whole body.
Once thought rare, sarcoidosis is a fairly common non contagious disease which can affect most parts of the body and occurs worldwide. In the United States it affects approximately 11 out of every 100,000 Caucasians and approximately 36 out of every 100,000 African Americans.
Age - sarcoidosis can affect men and women of all ages - it is more common in adults between 20 - 40 years.
Gender - sarcoidosis can affect both men and women - it is slightly more prevalent in women than men although rates vary between nations.
Prevalence & Race - sarcoidosis occurs worldwide although is more common in people of African, Asian, German, Irish, Puerto Rican or Scandinavian origin. It frequently occurs in the white population of Scandinavia and the black population of the Caribbean region. For example, sarcoidosis is a common disease in Sweden affecting over 60 people per 100,000 of the population.
Genetics - sarcoidosis can run in families being passed down from one generation to the next. However a genetic link has not yet been proven.
Environmental Factors - sarcoidosis is more prevalent in non-smokers than smokers.
Health care workers have a higher rate of sarcoidosis and exposure to materials such as beryllium metal (used in aircraft and weapons manufacture) and dust from birds or hay may cause sarcoidosis-like reactions in the lungs.
Treating Sarcoidosis
Despite such variation, the majority of people affected by sarcoidosis have the acute form of this disease.
Treatment is not always needed. Up to 60 percent of people with sarcoidosis receive no treatment and still recover. However, those who do not receive treatment need regular checkups as symptoms can develop later.
Treatments are usually taken to control the symptoms of sarcoidosis, or to improve the function of organs or body systems affected by the disease. There is no sarcoidosis cure.
Treatments do not always affect the long term outcome of the disease - a study found that 5-10 years after diagnosis there was no significant difference between those who had treatment compared to those who didn't (see references).
Where applicable, tests for sarcoidosis such as chest x rays and blood tests can be used to monitor the progress of a treatment.
Treating Sarcoidosis Affected Organs & Body Systems
The effects of sarcoidosis are often mild presenting no symptoms and an organ affected by sarcoidosis can continue to function normally. In such cases identifying the disease in that organ is unnecessary and no treatment is given (see sarcoidosis medications).
Lungs
The lungs are an organ commonly affected by sarcoidosis. If no symptoms are present, treatment is not normally given and people recover with time. Progress of recovery can be monitored using chest x rays and breathing tests. These tests can also be used to diagnose sarcoidosis.
Eyes
Eye drops are usually prescribed for sarcoidosis of the eyes. The eyes often respond well to this type of medication. However, some medications used to treat sarcoidosis such as hydrochloroquine can cause eye problems and the eyes should be periodically tested by an ophthalmologist (eye doctor).
Heart
Steroids can be used to treat sarcoidosis of the heart. Heart drugs can also be given to improve the hearts pumping ability or to correct a disturbed heart rhythm. A cardiac pacemaker or defibrillator can be used to restore severe rhythm disturbance. On rare occasions, a heart transplant may be needed if the heart is severely affected by sarcoidosis and doesn't respond well to these treatments.
Liver
Sarcoidosis medications are used to treat sarcoidosis of the liver - drug treatment can
reduce the granulomas in the liver. Rarely performed, a liver transplant may be needed if the heart is severely affected by sarcoidosis and doesn't respond well to medication.
Skin
The skin can be affected by sarcoidosis in a number of ways (see symptoms of sarcoidosis). People with erythema nodosum lesions are not normally treated using drugs. Erythema nodosum lesions usually disappear in weeks or months with or without treatment. For those who experience discomfort from the lesions non-prescription anti-inflammatory drugs such as aspirin or ibuprofen may be taken.
However treatment is often needed for lupus pernio lesions - another symptom of sarcoidosis of the skin
Nervous System
Neurosarcoidosis usually requires treatment. In severe cases strong medication, cyclophosphamid is prescribed. Treatment for neurosarcoidosis can last a long time as nerve tissue heals slowly.
Sarcoidosis Drugs - Effectiveness & Side Effects
Medications are used to treat sarcoidosis. Most sarcoidosis medications are used to suppress the immune system. An abnormal response from the immune system is thought be involved in sarcoidosis (see What is sarcoidosis?).
However, there are disadvantages when using medication to suppress the immune system:
By suppressing the immune system, the body's defenses are lowered and a person has a greater risk of infection from other diseases
Sarcoidosis medications are usually strong and can have bad side effects.
Sarcoidosis - types of medication
Prednisone
Prednisone is a drug most often used to treat sarcoidosis. A corticosteroid, prednisone is used to relieve tissue inflammation (a common symptom of sarcoidosis). People with sarcoidosis normally respond to the effects of prednisone.
Those who show no response to prednisone after a few months of treatment may:
have been wrongly diagnosed as having sarcoidosis
already have scarring and sarcoidosis won't improve with this type of treatment.
Prednisone treatment can last several months to many years - the longer the duration of treatment the greater the chance that symptoms will not return.
However, prednisone can have bad side effects and the doctor and person with sarcoidosis must 'weigh up' the benefits from using this drug against possible side effects. Low doses of prednisone are often prescribed to relieve symptoms without causing significant side effects.
Prednisone side effects can include:
high blood pressure
diabetes
heartburn
acne
weight gain
mood swings
sleep disturbance
Long term treatment using prednisone can lead to other side effects:
osteoporosis - thinning of the bones & skin
cataracts
glaucoma
Hydroxychloroquine
Hydroxychloroquine (brand name: Plaquenil) is another drug with anti-inflammatory properties. It is used to treat a number of other diseases including malaria, rheumatoid arthritis and lupus erythematosus.
Hydroxychloroquine is more effective at treating sarcoidosis of the skin and when blood calcium levels are high. There are fewer side effects with hydroxychloroquine compared to Prednisone. However, the drug is effective in only about a third of persons with sarcoidosis.
Hydroxychloroquine side effects include
stomach irritation
eye problems - it is recommended that people who take hydroxychloroquine have their eyes tested every 6 months
Methotrexate
Methotrexate is another sarcoidosis medication which is also used to treat other diseases. These include cancer, psoriasis and rheumatoid arthritis. The drug works in a high percentage of people with sarcoidosis (about 60 to 80 percent). However, it takes up to 6 months to relieve symptoms and methotrexate has side effects which can be dangerous or life-threatening.
Methotrexate side effects include:
nausea
mouth sores
an allergic reaction - can affect the lungs (rare)
boils or acne
joint pain
Methotrexate can also kill white bloods cells which are used by the immune system to fight off infection. People taking this drug should have regular blood tests to check white blood cell levels.
Long term use of methotrexate can lead to serious liver problems. If methotrexate is taken for more than 2 years a biopsy should be carried out on the liver to see if there is damage & if this treatment can still be used.
When methotrexate is taken in small doses side effects are usually limited.
Folic acid can be taken to reduce the chances of side effects.
Azathioprine
Azathioprine (brand name: Imuran) is another multi-use drug & is used to treat a number of diseases including rheumatoid arthritis - its is also used with organ transplants. Azathioprine treatment lasts for 6 months or more. Azathioprine can improve the symptoms in about 50 percent of people with sarcoidosis.
Azathioprine side effects include:
nausea
itchy rashes
sore mouth, throat and/or ulcers
skin becomes sensitive to ultraviolet light.
a lowering of white blood cells - regular blood tests should be used to monitor white blood cell levels
Cyclophosphamide
Cyclophosphamide (brand name: Cytoxan) is a powerful drug. Due to its potentially life threatening side effects it is used only in people with severe forms of the disease (such as neurosarcoidosis).
Cyclophosphamide side effects include:
irritation of the bladder
lowering of white blood cells
nausea
loss of appetite or weight
bladder cancer - found in some people who have been taking cyclophosphamide for more than 2 years
Sarcoidosis: Frequently Asked Questions
Q. Sarcoid and Cancer - Is Sarcoidosis A Form Of Cancer?
A. Sarcoidosis is not a form of cancer. Sarcoidosis and cancer differ in the way cells develop. In cancer, cells multiply out of control and lack order. In sarcoidosis, cells act as if they are growing around an unseen invader eventually forming granulomas or lumps.
Despite these differences, there is a link between sarcoidosis and cancer. People with sarcoidosis may be at a slightly higher risk of developing cancer - particularly liver, lung and skin cancers & lymphomas. This elevated risk may be related to the chronic inflammation in an affected organ(see symptoms of sarcoidosis). However, the overall risk is similar to what is seen in other chronic conditions, such as diabetes, inflammatory bowl disease, and rheumatoid arthritis. Some drugs used to treat sarcoidosis have been shown to increase the risk of cancer, but only when used in high doses for other conditions.
Q. Is Sarcoidosis Contagious?
A. Sarcoidosis is not a contagious disease - it is not 'passed on' or 'caught' from another person.
Q. Is Sarcoidosis A Genetic Disease?
A. Sarcoidosis has been found to occur in families - however a genetic predisposition to this disease is unproven. If a person has sarcoidosis there may be a slightly increased risk of another family member developing this disease.
Q. What Is The Cause Of Sarcoidosis?
A. The cause of sarcoidosis is unknown. Possible causes could be infection, a hypersensitivity response, a genetic predisposition or environmental causes such as exposure to chemicals. As the cause is unknown current treatments are designed to treat the symptoms of sarcoidosis rather than cure this disease.
Q. Why Is Diagnosing Sarcoidosis Difficult?
A. Diagnosing sarcoidosis is difficult because:
the cause of sarcoidosis is unknown
some symptoms are similar to those of other conditions
people may have a mild form of sarcoidosis and not display any symptoms at all
Multiple tests and procedures are therefore used to diagnose sarcoidosis which provide a fairly accurate diagnosis. About 95% of people with sarcoidosis have the correct diagnosis.
Q. How Can I Prevent Myself From Getting Sarcoidosis?
A. As the cause of sarcoidosis is not known there is no known way to prevent this disease. Only general preventative advice can be given. A possible cause could be environmental factors, so it would be advisable to not smoke, and to stay away from substances such as dust and chemicals which can harm the lungs.
Q. What Is Sarcadosis & Sarcodosis?
A. There are no conditions called sarcadosis or sarcodosis. These terms may be misspellings when referring to sarcoidosis.
Sarcoidosis on Amazon
An Atlas of Sarcoidosis
Amazon Price: $229.00 (as of 07/26/2008)
Sarcoidosis - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
Amazon Price: $28.95 (as of 07/26/2008)
Sarcoidosis Resource Guide and Directory
Amazon Price: (as of 07/26/2008)
Infliximab and leflunomide show promise for cutaneous sarcoidosis.(Dermatologic Therapy): An article from: Skin & Allergy News
Amazon Price: $5.95 (as of 07/26/2008)
Sarcoidosis mimicking disseminated testicular cancer.(Case Report): An article from: Southern Medical Journal
Amazon Price: $5.95 (as of 07/26/2008)
YouTube vids on Sarcoidosis
Sources on Sarcoidosis
Living With Sarcoidosis & Other Chronic Health Conditions by Gilbert Barr Jr.
<i>Living With Sarcoidosis & Other Chron more...0 points
The Official Patient's Sourcebook on Sarcoidosis by Icon Health Publications
This book has been created for patients who have d more...0 points
Me & Sarcoidosis: A Lifetime Partnership: A Patient's Story About Living With a Chronic Health Condition by Gilbert Barr
This is a story about one man%u2019s journey throu more...0 points
Sarcoidosis (Lung Biology in Health and Disease)
This reference is the most current and comprehensi more...0 points
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