How to Deal With Sarcoidosis

Sarcoidosis is the growth and accumulation of inflammatory-type cells in different parts of the body, most notably the lymph nodes, lungs, eyes and skin.[1] The cells eventually form abnormal lumps or nodules (granulomas), which can change the structure and function of the tissue affected. The cause of sarcoidosis is not entirely understood, but it’s thought to be related to an immune response to something that’s inhaled from the air — possibly fungi, bacteria or a viral particle.[2] There is no cure for sarcoidosis, and it sometimes completely resolves by itself, but most people can deal with it by taking basic precautions and seeking conservative treatments.

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    Recognize the symptoms of sarcoidosis. Sarcoidosis is a condition where cells called granulomas accumulate in the eyes, lungs, skin, and lymph nodes.[3] For many people, sarcoidosis begins with general symptoms, such as unexplained fatigue, mild fever, swollen lymph nodes and weight loss.[4] However, because lung involvement is so common with sarcoidosis, lung symptoms start to dominate: persistent dry cough, shortness of breath and chest tightness and/or pain. Skin symptoms typically involve a rash consisting of reddish-purple bumps and growths or nodules just under the skin. Eye symptoms aren’t common, but can include eye redness and pain, blurred vision and light sensitivity.

    • Approximately 90% of sarcoidosis patients have some type of lung issue, with nearly 1/3 experiencing respiratory symptoms such as coughing, difficulty breathing and chest pain.[5]
    • As many as 25% of sarcoidosis patients develop skin problems.[6]
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    Consult with your doctor. Sarcoidosis often doesn’t generate noticeable symptoms (particularly during its initial stages) and it often resolves itself after a few months, so doctors aren’t always so anxious to treat the condition with medicines.[7] Furthermore, drug treatment is usually only offered if good health practices (see below) fail to prevent sarcoidosis from progressing. Your doctor will give you a thorough exam, focusing on the areas commonly affected by sarcoidosis — lungs, lymph nodes, skin, eyes — before deciding if drug treatment is necessary.

    • You will need to see your doctor for a physical exam as well as some diagnostic tests. Diagnostic tests may include a TB test, chest x-rays (looking for lung damage or enlarged lymph nodes), blood tests (calcium levels, kidney and liver function), CT scan, EKG, pulmonary function test, eye exam and skin biopsy (looking for the tell-tale granulomas).[8]
    • Most patients (>75%) can get symptomatic relief by taking over-the-counter anti-inflammatory drugs (ibuprofen, naproxen) while at home.[9]
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    Talk to your doctor about corticosteroids. When drug therapy is recommended to combat sarcoidosis, the main goals are to keep the lungs and other affected organs working properly, and also to relieve symptoms generated by the affected organs. Corticosteroid drugs display powerful anti-inflammatory properties and remain the primary first-line treatment for preventing granuloma formation in sarcoidosis.[10] Prednisone is the most common oral corticosteroid prescribed for sarcoidosis, although other formulations can be applied directly to an affected area — via creams for skin lesions or via inhalers for lung granulomas.

    • Other drugs that your doctor may recommend include glucocorticoids, colchicine, azathioprine, and cyclophosphamide.
    • Keep in mind that there is currently no drug treatment that reverses lung scarring (fibrosis) caused by advanced sarcoidosis.
    • Side effects from taking corticosteroids include mood swings, water retention and weight gain, hypertension, acne, mineral leaching from bones and impaired immune function.[11]
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    Ask your doctor about “off-label” drugs. Off-label drugs are those used for conditions not originally approved for by the U.S. Food and Drug Administration (FDA). Doctors commonly use off-label drugs for a variety of other conditions because of reports of effectiveness. Common drugs used off-label for sarcoidosis include methotrexate (used against cancer and rheumatoid arthritis), chloroquine (antimalarial drug), cyclosporine (used with organ transplants to suppress immunity) and thalidomide (leprosy drug).[12]

    • Methotrexate and chloroquine currently have the most support from studies for effectively combating the side effects of sarcoidosis.[13]
    • The latest research is looking at using biologic medications that inhibit tumor necrosis factor (TNF-alpha inhibitors), such as adalimumab and infliximab. TNF-alpha inhibitors are normally used for rheumatoid arthritis and skin psoriasis, but show promise with sarcoidosis also.



Reducing Risk of Sarcoidosis


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    Maintain a strong immune system. For any type of infection (bacterial, fungal or viral), true prevention depends on a healthy and strong immune response. Your immune system consists of specialized cells that search for and attempt to destroy potential pathogens (like the ones that may cause sarcoidosis), but when the system is weakened, harmful microorganisms grow and spread virtually unchecked.[14] Consequently, focusing on ways to keep your immune system strong and functioning properly is a logical and natural approach to preventing essentially all infectious diseases.

    • Although it’s uncertain which foreign substance triggers the body’s abnormal response in sarcoidosis, it’s been observed that cases occur in groups of people with close contact and in recipients of organ transplants, which suggests a potential infectious ability.
    • Sleeping more (or getting better quality sleep), eating more fresh produce, practicing good hygiene, drinking lots of water and regularly exercising are all proven ways to keep your immune system strong.[15]
    • Your immune function will also benefit by cutting back on refined sugars (soda pop, candy, ice cream, baked goods) and drinking less alcohol (no more than one beverage per day).
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    Don’t smoke tobacco. Since sarcoidosis often affects the lungs, you shouldn’t smoke cigarettes or cigars if you’ve been diagnosed with the condition. Smoking causes more than 4,000 chemicals to affect the lungs, which causes irritation, inflammation, dysfunction and destruction of the various tissues.[16] Some of the chemicals in cigarette smoke also cause cellular mutations, which is the main mechanism of lung cancer. Smoking doesn’t directly cause sarcoidosis, but it can certainly make the condition worse.

    • Sarcoidosis usually starts in the lungs and the lymph nodes in the chest, which suggests that the cause or primary contributing factor for the disease is inhaled.
    • Other diseases and conditions of the lungs that can mimic sarcoidosis include berylliosis (lung inflammation related to beryllium exposure), asbestosis (inflammation related to asbestos exposure), tuberculosis, farmer’s lung disease, mesothelioma, lung cancer and fungal infections.
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    Avoid exposure to dust and chemicals. In addition to not smoking, you should also avoid exposure to other substances potentially harmful to the lungs, such as dust, chemical fumes, gases and toxic inhalants.[17] Sarcoidosis is likely not directly caused by common allergens or toxic chemicals, but any additional irritation or inflammation of the lungs only contributes to the diseases severity and makes symptoms worse.

    • Consider switching your household cleaning products to more natural ones, such as white vinegar, diluted lemon juice and/or colloidal silver.
    • To avoid inhalation of dust and other potentially irritating particles, wear a common medical / surgical mask while outside.
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    Change your diet. Sarcoidosis patients occasionally have abnormally high levels of calcium in their blood, the reasons for which are not clear.[18] However, if that’s the case with you, then avoiding excessive amounts of calcium-rich foods is likely a good idea until the disease goes into remission or your blood composition changes.[19] Calcium-rich foods include dairy products, sardines, canned salmon with the bones, collard greens, kale, broccoli and oranges.

    • Although vitamin D is important for strong bones and immune function, supplements should be discontinued (short-term) because the vitamin is responsible for increasing calcium absorption in the intestines.
    • In a related vein, vitamin D is produced by your skin in response to intense summer sunshine, so excessive sunbathing should also be avoided if you have sarcoidosis and high blood and/or urine levels of calcium.

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What is Sarcoidosis?

disease1wWhat is Sarcoidosis?  Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease that can affect almost any organ in the body. It causes heightened immunity, which means that a person’s immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body’s own tissues. The classic feature of sarcoidosis is the formation of granulomas, microscopic clumps of inflammatory cells that group together (and look like granules, hence the name). When too many of these clumps form in an organ they can interfere with how that organ functions.

In people in the United States, sarcoidosis most commonly targets the lungs and lymph nodes, but the disease can and usually does affect others organs, too, including (but not limited to) the skin, eyes, liver, salivary glands, sinuses, kidneys, heart, the muscles and bones, and the brain and nervous system.

What Causes Sarcoidosis?  No one knows exactly what causes sarcoidosis, but it is probably due to a combination of factors. Some research suggests that bacteria, viruses or chemicals might trigger the disease. Although such triggers might not bother most people, it is possible that in someone with the right genetic predisposition they provoke the immune system to develop the inflammation associated with sarcoidosis.

The fact that a person is more likely to develop the disease if someone in his or her close family has the disease strongly suggests that genetics plays a role. Researchers have not discovered the genes for sarcoidosis yet, but it seems likely that more than one gene is involved.

Who Has Sarcoidosis?  Once thought rare, sarcoidosis is now known to be common and affects people worldwide.  The disease can affect people of any age, race and gender.  However, it is most common among adults between the ages of 20 and 40 and in certain ethnic groups. Disease severity can vary by race or ethnicity.

  • In the United States, it is most common in African Americans and people of European “particularly Scandinavian” descent.
  • Among African Americans, the most affected U.S. group, the estimated lifetime risk of developing sarcoidosis might be as high as 2 percent.
  • Most studies suggest a higher disease rate for women.
  • Appearance of the disease outside of the lung is common in certain populations, for example: the eyes (chronic uveitis) in African Americans, painful skin lumps in Northern Europeans and the heart and eyes in Japanese.

What are the Symptoms?  Sarcoidosis is a multi-system disorder.  Symptoms typically depend on which organ the disease affects.  Most often the disease will affect the lungs.

  • General: About one third of patients will experience non-specific symptoms of fever, fatigue, weight loss, night sweats and an overall feeling of malaise (or ill health).
  • Lungs:  The lungs are affected in more than 90% of patients with sarcoidosis.  A cough that does not go away, shortness of breath, particularly with exertion and chest pain occur most frequently with the pulmonary form of the disease.
  • Lymph Nodes:  Up to 90% of sarcoidosis patients have enlarged lymph nodes. Most often they are in the neck, but those under the chin, in the arm pits and in the groin can be affected.  The spleen, which is part of the lymphatic system, can also be affected.
  • Liver:  Although between 50% to 80% of patients with sarcoidosis will have granulomas in their liver, most are without symptoms and do not require treatment.
  • Heart:   Researchers estimate that cardiac sarcoidosis, affects more than 10 percent of people with sarcoidosis in the United States, and perhaps as many as 25 percent.  Sarcoidosis can cause the heart to beat weakly resulting in shortness of breath and swelling in the legs.  It can also cause palpitations (irregular heartbeat).
  • Brain & Nervous System: From 5% to 13% of patients have neurologic disease.  Symptoms can include headaches, visual problems, weakness or numbness of an arm or leg and facial palsy.
  • Skin:  One in four (25%) of patients will have skin involvement.  Painful or red, raised  bumps on the legs or arms (called erythema nodosum), discoloration of the nose, cheeks, lips and ears (called lupus pernio) or small brownish and painless skin patches are symptoms of the cutaneous form of the disease.
  • Bones, Joints & Muscles:  Joint pain occurs in about one-third of patients.  Other symptoms include a mass in the muscle, muscle weakness and arthritis in the joints of the ankles, knees, elbows, wrists, hands and feet.
  • Eyes:  Any part of the eye can be affected by sarcoidosis and about 25% of patients have ocular involvement.  Common symptoms include: burning, itching, tearing, pain, red eye, sensitivity to light (photophobia), dryness, seeing black spots (called floaters) and blurred vision.  Chronic uveitis (inflammation of the membranes or uvea of the eye) can lead to glaucoma, cataracts and blindness.
  • Sinuses, Nasal Muscosa (lining) & Larynx:  About 5% of patients will have involvement in the sinuses with symptoms that can include sinusitis, hoarseness or shortness of breath.
  • Other Organs:  Rarely, the gastrointestinal tract, reproductive organs, salivary glands and the kidneys are affected.

How is Sarcoidosis Diagnosed?  Symptoms of sarcoidosis can mimic those of other diseases.  In some cases sarcoidosis may be diagnosed by excluding these other similar diseases.  Frequently, sarcoidosis is diagnosed because a routine chest x-ray shows an abnormality. To accurately diagnose the disease, most doctors will take a medical history and perform a physical examination. Laboratory tests of the blood, chest x-rays, breathing tests and biopsy are all diagnostic tools.

What is the Treatment for Sarcoidosis?  Different treatments will work better for different people, and sometimes more than one drug is used. In some cases, no treatment is needed. But, for some patients, intense treatment is required, especially if organs like the lungs, eyes, heart or central nervous system are affected.  Treatment is generally done to control symptoms or to improve the function of organs affected by the disease.

While progress has been made in understanding the symptoms and better diagnosing the disease, little is known about who is susceptible to sarcoidosis and the cause remains unknown.  With increased research, discovering the cause, improving treatment and finding a cure may be well within our reach. 


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