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Respiratory Disorders (Expert Forum)
I have just been diagnosed with sarcoidosis...
Answered by
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I have just been diagnosed with sarcoidosis...
by ndmom, Jun 06, 2003 12:00AM
Hello, I have been diagnosed with level 2 pulminary sarcoidosis. I am taking 40mg of prednisone a day to get the inflamation under control. I dont understand what the levels of Sarcoidosis are and my doctor has only treated one other patient with this desiese. I need some info. on if I will get better, what the chances of fibrosis are, What causes, could black mold have been a cause? My ct scan showed that my lymphnodes were inflamed and the the top of my lungs were cloudy but my breathing tests and blood cells were normal. With this known there wouldnt be any damage to my lungs, would there? Would it just be inflamation? I am sorry that I have so many questions... Im just very scared. Any info you could provide would be greatly appreciated.
Thank you' ndmom
Thank you' ndmom
Doctor's Answer
by National Jewish, Jun 16, 2003 12:00AM
, Jun 16, 2003 12:00AM
Sarcoidosis is a disease that causes small clusters of inflammation, called granulomas. The granulomas can occur in any area of the body, but are most common in the lungs, lymph nodes, eyes, and skin. When the inflammation occurs in the lungs it may show up as cloudy areas on the chest CT scan. If your lungs were damaged in addition to the inflammation, your breathing tests or lung function would be lower than normal.
Inflammation in the lungs can cause shortness of breath, wheezing or cough, often a dry cough. In some people, the symptoms go away completely with or without treatment. In other people the inflammation leads to permanent scarring or fibrosis. There is no way to predict the chances of fibrosis for a particular individual. The cause of sarcoidosis is unknown.
The term “level” or “stage” refers to the extent of the disease. Generally this is based upon the chest x-ray. There are 5 stages of sarcoidosis. Stage 0 is when the chest x-ray is normal.
When sarcoidosis affects the lungs, it can cause enlarged lymph nodes in the chest. Adenopathy is another term for enlarged lymph nodes. In fact, enlargement of the hilar lymph nodes is the most common finding when sarcoidosis affects the lungs. Hilar adenopathy is considered stage 1 sarcoidosis. The lung hilar is the area at the center of the lungs near the heart. Hilar adenopathy can occur by itself without any other health problem. When this happens it usually causes no symptoms and is of no consequence.
In stage 2 sarcoidosis there are changes in the lungs in addition to the hilar adenopathy. These changes show up as cloudy areas as you have described the chest CT scan showing at the top of your lungs.
With stage 3 sarcoidosis there are changes in the lungs that show up as cloudy areas on the chest x-ray, but there is no hilar adenopathy. At stage 4 sarcoidosis there is permanent damage to the lungs in the form of scarring or fibrosis.
Corticosteroids are the main treatment for sarcoidosis. They work to reverse the inflammation. Prednisone is the most commonly used corticosteroid. It is given daily or every other day, depending on the symptoms. You may need to take prednisone for 6 months to control the symptoms. It can decrease symptoms, improve lung function, decrease S.A.C.E. levels, reduce granuloma formation, and possibly, lessen scarring of the lungs. Corticosteroids can cause a number of side effects. Because of this, a doctor should carefully monitor people on corticosteroids. Please read our Corticosteroid MedFact at http://www.nationaljewish.org/medfacts/corticosteroid.html for further information about the side effects and their prevention. Talk with your doctor about preventing and watching for these side effects. The potential benefits from treatment usually outweigh the risks from the side effects.
A pulmonologist would be the type of specialist to treat sarcoidosis, especially when it affects the lungs, and monitor the benefits and side effects of the corticosteroid treatment. A pulmonologist at a university medical center is most likely to have the greatest experience in treating people with sarcoidosis. Please read our Sarcoidosis MedFact at http://www.nationaljewish.org/medfacts/sarcoid.html for more detailed information.
Inflammation in the lungs can cause shortness of breath, wheezing or cough, often a dry cough. In some people, the symptoms go away completely with or without treatment. In other people the inflammation leads to permanent scarring or fibrosis. There is no way to predict the chances of fibrosis for a particular individual. The cause of sarcoidosis is unknown.
The term “level” or “stage” refers to the extent of the disease. Generally this is based upon the chest x-ray. There are 5 stages of sarcoidosis. Stage 0 is when the chest x-ray is normal.
When sarcoidosis affects the lungs, it can cause enlarged lymph nodes in the chest. Adenopathy is another term for enlarged lymph nodes. In fact, enlargement of the hilar lymph nodes is the most common finding when sarcoidosis affects the lungs. Hilar adenopathy is considered stage 1 sarcoidosis. The lung hilar is the area at the center of the lungs near the heart. Hilar adenopathy can occur by itself without any other health problem. When this happens it usually causes no symptoms and is of no consequence.
In stage 2 sarcoidosis there are changes in the lungs in addition to the hilar adenopathy. These changes show up as cloudy areas as you have described the chest CT scan showing at the top of your lungs.
With stage 3 sarcoidosis there are changes in the lungs that show up as cloudy areas on the chest x-ray, but there is no hilar adenopathy. At stage 4 sarcoidosis there is permanent damage to the lungs in the form of scarring or fibrosis.
Corticosteroids are the main treatment for sarcoidosis. They work to reverse the inflammation. Prednisone is the most commonly used corticosteroid. It is given daily or every other day, depending on the symptoms. You may need to take prednisone for 6 months to control the symptoms. It can decrease symptoms, improve lung function, decrease S.A.C.E. levels, reduce granuloma formation, and possibly, lessen scarring of the lungs. Corticosteroids can cause a number of side effects. Because of this, a doctor should carefully monitor people on corticosteroids. Please read our Corticosteroid MedFact at http://www.nationaljewish.org/medfacts/corticosteroid.html for further information about the side effects and their prevention. Talk with your doctor about preventing and watching for these side effects. The potential benefits from treatment usually outweigh the risks from the side effects.
A pulmonologist would be the type of specialist to treat sarcoidosis, especially when it affects the lungs, and monitor the benefits and side effects of the corticosteroid treatment. A pulmonologist at a university medical center is most likely to have the greatest experience in treating people with sarcoidosis. Please read our Sarcoidosis MedFact at http://www.nationaljewish.org/medfacts/sarcoid.html for more detailed information.
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http://library.nationaljewish.org/MSU/12n2MSU_Sarcoidosis.html
Sarcoidosis
Volume 12, Number 2, February, 1994
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http://www.lungusa.org/diseases/lungsarcoido.html
Sarcoidosis
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http://www.nsrc-global.net/HEAD.HTM
National Sarcoidosis Resource Center
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http://www.epler.com/wsarc.html Sarcoidosis
http://www.epler.com/wsarc_trmnt3.html Treatment
Excerpt:
"There has been a change in the approach to the management of sarcoidosis for a large group of patients. In the past, patients with the diagnosis of sarcoidosis were treated. Now, patients are categorized into two groups. One group that is treated, and another group that treatment is delayed or not given.
The current emphasis is for a period of observation for patients who do not require treatment for symptoms. Studies have shown that 40% of patients will have spontaneous improvement, 40% of patients will respond to subsequent treatment, and 20% of patients will require immediate treatment."
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Consider getting a 2nd opinion from a pulmonologist with experience in sarcoidosis; preferably from a teaching institution.
Ellis