Many of us first heard about the disease sarcoidosis when it was revealed comedian Bernie Mac had been diagnosed with it. Since that time, we’ve learned that Tisha Campbell Martin has also been diagnosed.
In the United States, sarcoidosis is more prevalent among African-Americans, presenting 10 times more common in Blacks, and occurring two times more frequently in Black females than in Black males.
WHAT IS SARCOIDOSIS? ARE THERE DIFFERENT TYPES?
Sarcoidosis is a disease that causes your immune system to overreact, which can lead to health issues. We don’t know exactly what triggers this over-reaction, but this is a subject of intense investigation in the research labs across the country. While sarcoidosis can affect virtually any organ in the body including the skin, lymph nodes, heart, nervous system, and joints, over 90% of cases include the lungs.
HOW DOES SARCOIDOSIS AFFECT YOUR BODY? DESCRIBE THE SYMPTOMS.
If you have sarcoidosis, the increased inflammation in your body may cause flu-like symptoms such as night sweats, joint pain and fatigue. This inflammation can lead to scar tissue in your lungs while also making them function more poorly. Some people with sarcoidosis also have skin and eye damage in addition to lung disease. Occasionally, those with sarcoidosis develop granulomas and inflammation in their hearts, which can trigger abnormal heart rhythms and problems with heart muscle pumping strength.
WHAT CAUSES SARCOIDOSIS AND WHY IS IT SO HARD TO DIAGNOSE?
No one knows what exactly causes sarcoidosis, but we do know that people over the between the ages of 20 and 40 years old, and women are more likely to develop sarcoidosis.
Sarcoidosis is difficult to diagnose because of the range of ways it can show up in the body – from skin rashes to blurry vision to respiratory problems – and some patients never have overt symptoms. In addition, sarcoidosis is a rare disease – estimated to affect 200,000 Americans (i.e. < 0.1% of us) making leading to a lack of knowledge among some physicians. Lung doctors tend to have the most experience with sarcoidosis.
IS SARCOIDOSIS HEREDITARY?
The incidence rate in African-Americans is threefold to fourfold higher compared to Caucasian patients, however the disease has been characterized in all demographics regardless of age, gender or race.
IS IT ALWAYS DEADLY OR CAN ONE LIVE A FULL LIFE WITH SARCOIDOSIS?
You absolutely can live a full life with sarcoidosis. Sarcoidosis is a confusing disease in the fact that symptoms can come and go, and range in severity overtime. In most of these cases, the disease improves by itself, and up to 30% of patients with sarcoidosis have symptoms improve without treatment.
It is sometimes said that 1/3rd of patients improve without treatment, 1/3 remain unchanged even without treatment, but 1/3rd tend to have progressive disease that may need treatment. In many people with evidence of organ dysfunction treatment with anti-inflammatory medications can be very helpful.
WHAT ARE YOUR SUGGESTIONS FOR INDIVIDUALS LIVING WITH SARCOIDOSIS ON HOW BEST TO MANAGE THEIR DISEASE?
it is very important to involve your doctor in your treatment and management plan with sarcoidosis. By monitoring how your symptoms change over time, you can make sure you are getting the right treatment at the right time, and accessing the support you need.
Sarcoidosis is often treated with the help of a multidisciplinary team of healthcare professionals. Because the disease can affect so many organ systems, you may work with healthcare providers who specialize in the treatment of the lungs, heart, brain, kidneys, liver, eyes and skin.
Support can come in many forms, and include oxygen therapy for patients with advanced disease who have low oxygen levels in the blood. For such sarcoidosis patients, supplemental oxygen can be helpful to decrease your shortness of breath during everyday activities and feel less fatigued and help keep you active. Pulmonary rehabilitation programs can be helpful for those who have experienced muscular deconditioning after a period of significant exercise limitation due to illness. It is important to keep moving.
WHAT ARE THE SIGNS THAT YOU MAY HAVE SARCOIDOSIS?
Sarcoidosis is difficult to diagnose because of the range of ways it can show up in the body – from skin rashes to blurry vision to respiratory problems – and some patients never have overt symptoms. In addition, sarcoidosis is a rare disease – estimated to affect 200,000 Americans making knowledge leading to a lack of knowledge among some physicians. However, you should contact your doctor if you think you have the flu or are experiencing any of the symptoms – blurry vision, skin rashes, respiratory issues.
ARE THEY ANY SUPPORT GROUPS FOR PEOPLE WITH SARCOIDOSIS?
It’s essential to reach out to others in similar situations to talk and support one another. The American Lung Association has Better Breathers Clubs that meet once or twice a month with a respiratory therapist to learn more about their chronic lung disease and connect with others in similar situations. You can find the Club closest to you at Lung.org/better-breathers, as well as information about our online support groups should travel be a barrier for you.
Dr. Christman now answers questions from the Text Tom Club on the next page.
How soon do you start to get swollen?
Not everyone tends to collect fluid and develop swelling in the legs. This usually occurs in patients who have serious, progressive sarcoidosis with low blood oxygen levels and high blood pressure in the lungs. Only about 1/3rd of people with sarcoidosis have progressive disease that needs treatment.
Does this disease mimic or can it be misdiagnosed as fibromyalgia?
Great question. Sarcoidosis can be one of the great mimics, which can make it hard to diagnose. Although it affects the lungs in more than 90% of patients, it can also affect the lymph nodes, skin, eyes, and heart, so the symptoms depend a lot on which organ is affected.
Although some folks with sarcoidosis have muscle and joint aches with a specific type of skin rash early in the illness, these symptoms are usually limited in duration. This is a special form of sarcoidosis (known by the name of Lofgren’s syndrome) that has an excellent prognosis and essentially never needs treatment. This distinguishes it from fibromyalgia which persists for a very long time and has fatigue as a very prominent feature. Although fatigue can be seen in advanced sarcoidosis, it is not common in early stable disease.
Is there a specific test or blood test for sarcoidosis?
Not at present. If patients have specific mild symptoms and a chest X-ray that shows a certain pattern of swollen lymph nodes in the middle of the chest, we can be nearly certain of the diagnosis. Most of the time patients have lung symptoms of cough and shortness of breath, a doctor finds an abnormal chest X-ray, and a biopsy is needed to make the diagnosis.
Fortunately, this is not a major surgical biopsy, but rather a tiny biopsy (about the size of the head of a pin) that is done through a flexible bronchoscope by a lung specialist during a same-day sedation visit. There are a few lab tests that can help support the diagnosis of sarcoidosis (e.g. serum ACE level), but they are not diagnostic of the disease.
Sarcoidosis symptoms sound exactly like lupus. Is it an autoimmune disease and how do you differentiate between the two?
We continue to learn more about what triggers the onset of diseases like sarcoidosis and lupus. They certainly can share a lot of features, especially the involvement of multiple different organs. That said, making a diagnosis of systemic lupus (SLE) involves a complex series of findings developed by the American Rheumatologic Association.
Folks with SLE usually have true evidence of autoimmunity in that we can measure specific antibodies against key proteins (i.e. anti-self-antibodies). Despite a lot of research, we have not found these kinds of antibodies in patients with sarcoidosis. Also, they look different under the microscope when tissue biopsies are examined. There seems to be a different trigger for sarcoidosis. Many investigators believe that an infectious agent related to tuberculosis (but not infectious in the same way) could be the trigger for the ongoing granulomatous inflammation we see in sarcoidosis.
I was diagnosed with sarcoid in 2014 with a spot near my eye. Now it’s in my joints, lungs and sinuses. Prednisone helped but you can’t be on prednisone long term. What medicine can u take to control all of my symptoms?
I am sorry to learn of your ongoing health problems with sarcoidosis. Certain early patterns of the disease, such as prominent involvement of areas outside the lungs, tend to predict persistence and progression of the disease. Although prednisone helps many people with active disease, such treatment is not always helpful and high doses of steroids over a long period of time are hard on your health.
Several other anti-inflammatory drugs have been tried. Only the anti-TNF drugs have been shown in clinical trials to have an effect. I would suggest discussing this with your doctor since clinical management of advanced sarcoidosis is so complicated.
You may want to contact Dr. Wonder Drake at the Sarcoidosis Center of Excellence (via the Infectious Disease Division—615-322-2035) if you are interested in enrolling in a clinical trial using a novel antibiotic regimen that has been effective in preliminary studies.
I initially had a Pulmonary Sarcoid diagnosis in 1990 and was later diagnosed with Psoriasis in 2014. Is there a connection between the diseases?
I am not aware of a specific link between sarcoidosis and psoriasis, although both diseases involve persistent, unexplained cellular inflammation in tissues. It may be that you have an immune system that is too active and tends to respond to environmental stimuli too strongly. Also, it turns out that skin involvement with sarcoidosis looks a lot like psoriasis. Was the diagnosis of psoriasis made by a dermatologist and confirmed by a skin biopsy? I would wonder whether the rash could have been skin sarcoidosis.
Can a persistent cough or frequent bronchitis be symptoms of sarcoidosis?
Yes, these can be the symptoms of sarcoidosis. More commonly causes of persistent cough would be post-nasal drip from allergies, asthma, smoking, severe heartburn, and fluid build-up from heart problems.
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