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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