Sarcoidosis - Symptoms

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What are symptoms of sarcoidosis?

Shortness of breath (dyspnea) and a cough that won't go away can be among the first symptoms of sarcoidosis. But sarcoidosis can also show up suddenly with the appearance of skin rashes. Red bumps (erythema nodosum) on the face, arms, or shins and inflammation of the eyes are also common symptoms.

It is not unusual, however, for sarcoidosis symptoms to be more general. Weight loss, fatigue, night sweats, fever, or just an overall feeling of ill health can also be clues to the disease.

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Comment from: Vanessa, 55-64 Female (Patient) Published: August 27

In my 30s I was getting small lesions on my face around my mouth and eyes. I went to a dermatologist to address the skin issues and was diagnosed with sarcoidosis. I was referred to a pulmonologist, did not have other symptoms, and chest x-rays were fine. I was supposed to follow up routinely and did not. I had just quit smoking my 1st out of 3 tries. Thinking back I continued to have symptoms, the cough mainly. I returned to smoking and quit once again and smoked until 2005. I was diagnosed with breast cancer in 2004, for the treatment and plastic surgery I had to quit smoking again; 3rd of 3 tries. After diagnosis and treatment for breast cancer, a year later the shortness of breath and cough I thought was from smoking continued. The cancer doctor sent me to a pulmonologist and it was the sarcoidosis again. Initial treatment was with steroids and I found them intolerable. Later methotrexate was prescribed, which worked well. The year 2014 was a very good year for breathing and fewer symptoms. In 2015 I had pneumonia after that treatment (antibiotics and prednisone), and I ended up in the hospital again because I could not breathe and my oxygen levels were low. They sent me home on oxygen during exertion. Two weeks later I had a lung spontaneously collapse. After a week in the hospital with a chest tube I am home reading up for my next pulmonary doctor visit in September. Symptoms have generally been shortness of breath, repeated bouts of bronchitis, exhaustion, skin nodules, productive and non-productive cough.

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Comment from: Austin Sarah, 65-74 Female (Patient) Published: November 18

I have had sarcoidosis since 2003. I thought I was having a heart attack but it was just the onset of the disease. Although I was diagnosed in 2003, it was dismissed as insignificant to my health until I went to a specialist in 2008. By that time I was very, very sick and had been misdiagnosed as having multiple myeloma. I had explosive bowel movements, bloody noses, and incredible malaise. I didn't know it, but my lungs were gradually being affected. I also had a metallic taste in my mouth. A persistent pathologist cleared it up. I went to the best sarcoid center and started on prednisone.

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