Re: EN and body bumps/sarcoidosis?

[Guest guest]

Hi ,All I can think of is sarcoidosis:What is sarcoidosis?

Sarcoidosis is a multi-systemic disease in which the immune system responds in an abnormal, over-reactive, state to an unknown stimulus.

It can affect any organ in the body, and there may be a wide variety of symptoms. Although it was first recognized over 100 years ago, much about it remains a mystery. The origin of the disease is still unknown, and currently there is no known cure. Sarcoidosis is not contagious.

In healthy individuals, the immune system is responsible for fighting germs that invade the body. In people with sarcoidosis, the over-reactive immune system attacks an unknown invader. This over-reaction is characterized by the formation of granulomas (inflammatory masses) in the affected organs. Granulomas are lumps formed by cells of the immune system clumping together as they attack. The severity of the disease is dependant on the size, number, and location of these granulomas.

Current estimates approximate that over 50 percent of people with sarcoidosis will get well within 2 to 3 years without treatment. This gives room for hope of spontaneous remission in many with sarcoidosis. Another 30 percent have recurring problems throughout their life. Only approximately 10 percent will have chronic debilitating effects, and mortality is less than 3 percent.

Although once thought to be a rare disease, with better diagnostic procedures and disease tracking, it is becoming more commonly recognized. Your lifetime risk of developing sarcoidosis is estimated at less than 2 percent.

What causes sarcoidosis?

There is currently no known cause for sarcoidosis. It closely resembles tuberculosis, berylliosis, and many autoimmune diseases. The resemblance to TB causes some to think that it may be an infectious organism, but it is yet to be proven. With the high occurrence of lung involvement it is believed to be something that is inhaled. This may include a toxin, allergen or other environmental exposure. There is also thought to be a genetic predisposition that makes some people more susceptible than others.

What are the symptoms of sarcoidosis?

As stated earlier this is a multi-systemic disease that can affect any organ, and symptoms vary greatly. There are a few general symptoms like fatigue, headaches, visual changes, general weakness, fever and weight loss, but these symptoms also occur in many other ailments. With pulmonary (lung) involvement, there may be chest pain, shortness of breath or a dry cough. When cutaneous (skin) involvement occurs, rashes and red bumps are common. Many patients have no symptoms, and the diagnosis is made almost accidentally through routine testing or x-rays. There are more symptoms listed under Organ Involvement below.

Organ involvement (possible)

Listed are the current approximations of organ involvement and commonly occurring symptoms. Remember any organ can have sarcoid.

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Lung (Pulmonary) 90% - Shortness of breath, chronic cough, hoarseness, wheezing, tightness, and chest pain.

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Lymph Nodes 75-90% - Swollen glands.

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Liver 60-90% - Organ enlargement.

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Spleen 50-60% - Organ enlargement.

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Joints 25-50% - Arthritis like pain is common.

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Skin (Cutaneous) 25% - Rashes, blisters & growths of many types, and reddish-blue patches.

·

Eye 25% - Burning, watery, itchy, red, light-sensitive eyes.

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Nasal Mucosa 20% - Sinusitus.

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Parotid Gland 10% - Organ enlargement.

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Nervous System 5% - Tingling, numbness, paralysis, headaches, dizziness, vertigo & seizures are all possible.

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Bone 5% - Joint pain similar to arthritis is common, severe pain is possible.

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Heart (Cardiac) 5% - Irregular heart beat is possible.

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Larynx 5%

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Pleura (Lining of the lungs)1-5%

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Calcium Metabolism 1-2%

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Vertebral Bone Marrow, rare - Joint pain & severe pain.

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Kidney, rare.

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Endocrine Glands, rare.

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Gastro-intestinal system, rare.

How is sarcoidosis diagnosed?

Sarcoidosis is a relatively difficult diagnosis to make. It is a diagnosis of exclusion. To come to the diagnosis of sarcoidosis, your doctor must first exclude all other known similar granuloma-forming diseases. Depending on your symptoms and the disease's presentation, the diagnosis may be made quickly or may take quite a while. A physical exam, chest x-rays, blood tests, pulmonary function studies, biopsies of affected organs, MRI/CT/Gallium scans, and bronchoscopy are all possible during the diagnosis procedure. At this time there is no one specific test to make the determination of sarcoidosis.

Who gets sarcoidosis?

Sarcoidosis occurs throughout the world. Both women and men of any race, color, ethnicity, or age can get sarcoidosis. It most commonly appears between the ages of 20 to 40, but has been seen in the young and elderly alike. The question often arises whether members of the same family can get sarcoidosis? Yes, although not common, familial sarcoid does occur. This is one more reason why many researchers feel that there is a genetic component to the disease.

The occurrence of sarcoidosis is approximately 40 per 100,000 in the United States and approximately 60 per 100,000 in Sweden. Certain areas of the world such as China, SE Asia, and the Middle East rarely report cases of sarcoidosis. Also Native North Americans seem to have a low occurrence rate. But remember, anyone can get sarcoidosis.

Is there any treatment for sarcoidosis?

Currently there is no miracle drug or cure for sarcoidosis, but the treatments for sarcoidosis are improving every day. The decision of when to start treatment depends on symptoms, organ involvement, amount of inflammation, and possible side effects of the treatment. There are many side effects from the use of currently available treatments, so you and your doctor will have to weigh all of the options. Commonly used treatments include corticosteroids like Prednisone, and other immunosuppressive drugs such as Methotrexate, Cyclosporine and Hydroxychloroquine.

Recently some doctors have started prescribing inhaled steroids similar to those used in asthma. The inhaled steroids may help suppress active lung sarcoid while causing few if any side effects.

Pulmonologists usually handle sarcoid patients because approximately 90 percent of people with this disease have it in their lungs. In chronic sarcoid cases, it is common to include other specialists depending on organ involvement.

With any treatment for sarcoid, frequent monitoring by your doctor or doctors is required.

There is also some good info available from the National Institute of Health:

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

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