Sharon Denise Allison-Ottey
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What Can I Expect from Sarcoidosis?

Posted by Administrator (admin) on Dec 11 2007
Ask Dr. Sharon >> Ask Dr. Sharon

Sharon D. Allison-Ottey, MD

Dear Dr. Sharon,

I am a 48 year old woman that has lived with Sarcoidosis for the last two years. I met you recently at a conference and I asked about the disease, thank you for your kindness and ability to break this down for me. Although my doctor has talked to me about it, I’m still very afraid of the possible long term effects of the disease and what the medications may be doing to me. I am ok now but have times where I can’t breathe well and have a lot of joint pain. I believe that not enough people know about Sarcoidosis, can you please share more information and tell me what I can expect. Thank you so much and you are a DYNAMIC speaker—we LOVED YOU!

 L. Mansion (Baltimore, MD)

Dear L. Mansion,

Thank you for the question and YES I do remember you from the conference, you are a beautiful lady inside and out!  Let me start by saying that I agree—there needs to be more information on this disease and I do recommend that you reach out to The Sarcoidosis Awareness Network ( 

Let me give a little background information that you probably know but others may not. Sarcoidosis (sar"koi-do'sis)  has been recognized by the medical community since the early 1800s and is a disease. The cause of Sarcoidosis is not known; however, this diagnosis is what is known as a "diagnosis of exclusion" based on your doctor ruling out other disorders. In simple terms this means-- the physician has “ruled out everything else so it is probably Sarcoidosis”.  There are several tests that help “point to” the diagnosis. One of the problems with Sarcoidosis is that we do not know exactly how persons develop the disorder.   Scientists think that Sarcoidosis develops when your immune system responds to something in the environment (e.g., bacteria, viruses, dust, chemicals) or perhaps to your own body tissue (autoimmunity).  You must have patience while being evaluated for Sarcoidosis. Typically your doctor will schedule a physical exam, chest x-rays, blood tests, pulmonary (lung) function studies, biopsies of affected organs, MRI/CT/Gallium scans, and other tests during the workup. At this time there is no one specific test to make the determination of Sarcoidosis.

Sarcoidosis was once thought to be an uncommon condition. It is now known to affect tens of thousands of people throughout the United States. Because many people who have Sarcoidosis have no symptoms, it's hard to know how many people have the condition. Brothers and sisters, parents, and children of people who have Sarcoidosis are more likely than others to have Sarcoidosis. It is important to note that Sarcoidosis can occur in men and women. It occurs mostly in:

  • Adults between the ages of 20 and 40
  • African Americans (more often and more severe)
  • People of Asian, German, Irish, Puerto Rican, and Scandinavian origin.

People who are more likely to get Sarcoidosis include:


  • Health care workers
  • Nonsmokers
  • Firefighters
  • Elementary and secondary school teachers
  • People exposed to agricultural dust, insecticides, pesticides, or mold

Sarcoidosis involves inflammation that produces tiny lumps of cells in various organs in your body in healthy people; the immune system is responsible for fighting germs that invade the body. In people with Sarcoidosis, the over-reactive immune system (the system goes into overdrive) attacks an unknown invader. This over-reaction is characterized by the development of tissues called granulomas (tiny lumps become larger inflammatory masses) in the affected organs. The severity of Sarcoidosis depends on the size, number, and location of these granulomas.

Sarcoidosis can occur in almost any part of your body, although it usually affects some organs more than others. It usually starts in one of two places:

  • Lungs
  • Lymph nodes, especially the lymph nodes in your chest cavity.

When you state that you have difficulty breathing, this indicates that your lungs are involved. However, it can also affect your skin, eyes and liver as well as other parts of the body. You asked what to expect with this diagnosis. I strongly suggest that you work closely with your doctor and see specialists.  Keep a journal and write down your questions before your appointments after all this is YOUR body you’re your life. The good news is that 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 (no longer an active disease) in many with Sarcoidosis. Another 30 percent have recurring problems throughout their life. Only approximately 10 percent will have serious complications. 

Whatever the changes in Sarcoidosis they usually occur slowly (e.g., over months). Sarcoidosis does not usually cause sudden illness. However, some symptoms may occur suddenly. They include:

  • Disturbed heart rhythms
  • Arthritis in the ankles
  • Eye symptoms.

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 consider all of the options. Commonly used treatments include steroids, and other drugs such as Methotrexate, Cyclosporine and Hydroxychloroquine. These medications all have potential side effects and I cannot stress enough the need to have open conversations with your physician. These medications require that your kidney and liver be checked regularly as well as other blood tests and bone scans. Also, the medications can lead to new conditions like diabetes and weight gain. However, your physician and pharmacist will talk with you about the side effects and you should learn all that you can about the disease. Thank you for your questions and feel free to keep me up to date with your progress. I will keep you in my prayers!

Last changed: Dec 11 2007 at 1:43 PM


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