exaberation of sarcoidosis

[jason1]

well my  name is leo i am from lewiston maine and i was diagnosed with sarcoidosis stage 2 a year age .now i have sarcoidosis a new stage exerbaration of sarcoidosis and i still get massive burning and shortness of breath .plus cold chills what is causing  this and is there a cure yet .and far as a i no there is no cure  to this dat please answer that for me cause i get scared  when i see my xrays all black

[SarcSurvivor]

Have you tried a trial of limiting light exposure as much as possible and avoiding all sources of vitamin D? It's a matter of wearing clothing that covers skin, as well as hats, gloves and sunglasses. That step (though it takes a lot of discipline) improved my pain. Sarcoidosis patients can have dysregulated vitamin D metabolism.

As Dr. Newman of National Jewish was quoted in this news article saying, "Sarcoidosis can cause redness in the eyes, shortness of breath, bumps on the skin, fatigue, fever and general pain caused by exposure to light."
http://www.sciencedaily.com/releases/1997/04/970423104148.htm

You may not feel the effects of restricting all sources of light and vitamin D foods for a day or two. Don't forget to look at vitamins, supplements and food labels to see if anything you are eating contains added vitamin D.

There is a collection of information on this topic at www.sarcinfo.com

[National Jewish]

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 x-ray.

Inflammation in the lungs can cause shortness of breath and a burning feeling in the chest.  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 stage refers to the extent of the disease.  Generally this is based upon the chest x-ray.  Stage 0 sarcoidosis is when the chest x-ray looks 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 on the chest x-ray.

At this time there is no cure for sarcoidosis.  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.  The closest to you may be in Boston, MA.  Please read our Sarcoidosis MedFact at http://www.nationaljewish.org/medfacts/sarcoid.html for more detailed information.

However, the symptoms that you have described are not typical for sarcoidosis, especially the massive burning and cold chills.  You need to know for sure that sarcoidosis is the cause of your symptoms.  There are other conditions that can mimic sarcoidosis, but they may be treated differently.

[Jane1]

Talk to your GP

Check out www.sarcinfo.com

I have sarcoidosis it is not a desperate situation - sometimes your body can fight it off without treatment, I too have the cold chills, but hopefully they will go away.  There is no known cure for Sarcoid, but the body can cure itself, There is no known reason for getting this, but some research believes it is linked to a certain bacteria and an antibiotic regime will keep it at bay.  The main thing is you need to ask these questions in confidence with your Doctor and you need to get regular check ups of your lungs & yearly check-ups with your optician.

Keep it monitored, think positive and you will be able to live a normal healthy live - don't think negative or have thoughts of black lungs, sarcoid can be treated.

J