Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

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: Mickey, 65-74 Female (Patient) Published: July 21

I am a 70 year old female. I was diagnosed with sarcoidosis (tests and a biopsy) 10 to 12 years ago because I got tired of getting bronchitis (every time after recovering from cold or flu) so bad I would cough so hard it would empty my stomach. That is still my only concern. I've had no pain for 10 years. On July 16 I had level 9 pain dropping down to level 7 for 9 hours. No pain afterwards.

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Comment from: lilgirlblue, 45-54 Female (Patient) Published: April 17

I have sarcoidosis of the lung as of 2014. I was on steroids but it did help at all and now I have all kinds of pain, something new every month, and all my pain is always on the left side of my body. I coughed for about six month before my family doctor referred me to a lung specialist after a CT scan showed a mass on my lung.

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Comment from: JennyB, 45-54 Female (Patient) Published: September 08

I received a clinical diagnosis of sarcoidosis the same day I was told I had breast cancer. During chemotherapy problems with white blood cell count and infections every round were probably due to sarcoidosis. Now one year later I have developed a dry cough and shortness of breath, and also very painful upper back spasms. I already have fatigue. I don't cough at all when I am sleeping or not talking in a warm room.

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Comment from: Shaydie, 35-44 Female (Patient) Published: July 07

I kept getting shooting, stabbing pains in my rib cage for months. A couple of times I almost wrecked my car, they hit me so hard, but usually I would be at my desk and I'd grip something and scream. They were very fleeting. I went to two emergency rooms and an urgent care and kept being told I had pleurisy. I knew it was something else. Finally, a pulmonologist by chance happened to walk by my x-ray and saw a nodule no one else had seen. I went in for video-assisted thoracoscopic surgery (VATS) and was diagnosed with sarcoidosis. I used to get out of breath from riding my bike or running up the stairs, but thought I must have been out of shape. My oxygen levels are always perfect, even though the scarring has destroyed about 30% of my lungs. After two years on prednisone, I went off and still get the shooting, stabbing pains on occasion, but not as bad as I did. In the meanwhile, I was also diagnosed with Sjogren's syndrome (another autoimmune disease) which causes me to have dry eyes and sore joints. I take Plaquenil for that.

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Sarcoidosis - Describe Your Experience Question: Please describe your experience with sarcoidosis.
Sarcoidosis - Treatment Question: What kinds of treatment, including medication, did you receive for sarcoidosis? Did they help?
Sarcoidosis - Coping Question: How have you been able to cope with your sarcoidosis?

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