Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: 55-64 Female (Patient) Published: January 11

I am a middle aged woman and have been diagnosed with sarcoidosis. My biggest problem is the inflammation in my eyes! I am on methotrexate, now 25 mg and prednisolone 10 mg and I have had episodes of eye inflammation and pain in the eyes almost every other week for eighteen months. I am hoping that now methotrexate is going up in dose that it will control it. I also have had a lot of back pain recently and have wondered why night sweats, as I am past menopause. I noticed with interest that both these can be symptoms of sarcoidosis; fatigue also. Every now and again I will have joint swelling and pain, which stays for a few days then thankfully goes. I do not like this disease!

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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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Comment from: Robert, 65-74 Male (Patient) Published: February 19

I have been diagnosed with sarcoidosis on the face only, 40 years ago. When I have a breakout, they inject me with prednisone in all the bumps around my eyes and mouth. If it's a real bad break out, I also get put on prednisone pills. This last breakout has not gone away like all the previous times so the doctor gave me a shot of cortisone in the buttock instead of orally. I still see the bumps and I fear this is not working. I really hate all this prednisone and cortisone.

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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: 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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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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