Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: kj, 45-54 Female (Patient) Published: May 03

I had a raised, discolored bump on my shin then a year later another one in the same area. However, my dermatologist just kept treating with creams and didn't bother to tell me that the biopsy pointed to sarcoidosis so by the time it was finally diagnosed in 2008 (6 years later), I had lots of damage done to my lungs as well. The leg has gotten much worse and is totally disfigured. All my shin almost up to my knee. After being treated with prednisone, plaquenil and methotrexate for the last 4 years, my lungs are doing better, but not my skin, as I have spots on almost every body part now. I joined a study with Cleveland Clinic and have been getting injections of either Simponi or Stelara for seven months. Now I have developed neutrophilia and have an extremely high white blood cell count along with most things in my CBC being off. I now have an apartment with a hematologist at Cleveland Clinic to try to figure out why. We aren't sure if one of the drugs has caused it or not. We are hoping it doesn't turn into leukemia which would be the next step. Wish me luck.

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Comment from: Kalpesh, 35-44 Male (Patient) Published: January 06

Sarcoidosis symptoms which I experienced were weight loss, night sweats, fever.

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Comment from: carol, 55-64 Female (Patient) Published: September 21

I am in unbearable pain with sarcoidosis. I've had both eyes operated on, lung surgery to remove the lumps, heart surgery, bell's palsy twice (each time for a year), I can't exert myself or I go into a coughing spasm, I can't even laugh heartily as this also causes choking and coughing, I have nauseating migraines that won't go away, I have skin lesions, I had kidney failure, my bowels erupted, I have joint pain...The list goes on and on. I can't find a doctor to treat me. I actually planned suicide, but God pulled me up out of that death trap.

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Comment from: Dee, 55-64 Female (Patient) Published: September 21

I had an active sarcoidosis 30 years ago. The first symptom I got was a skin bump but didn't do anything about it until I lost my eye sight and was surprised to learn they were related.

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Comment from: Gary, 65-74 Male (Patient) Published: April 26

My symptoms were shortness of breath, night sweats, and fatigue. I was finally correctly diagnosed in the early 1990s. I also had lymphoma and this caused some confusion among the doctors. Lung X-rays and a biopsy confirmed the sarcoidosis. Several biopsies from a lump on my neck confirmed lymphoma. The ophthalmology and pulmonary doctors monitor my lungs and eyes.

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Comment from: Richard, 55-64 Male (Patient) Published: March 29

I was officially diagnosed in September 2010 as having Sarcoid(osis). This was suspected back in May 2010 when I was diagnosed with Uveitis in both eyes. This was treated with topical steroid eye drops. However, my blood results in August showed that the Sarcoidosis had spread to my kidneys and my kidney function was down to 13%. I had an emergency kidney biopsy which confirmed the presence of granulomas in both kidneys. I was started on 60mg of Prednisone immediately. The Prednisone had some unfortunate side effects such as muscle cramps in arms and legs and some headaches. I am now down to 5mg Prednisolone per day (after 6 months) and my kidney function has improved to 43%.

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Comment from: teatimewithlorry, 65-74 Female (Patient) Published: March 02

I was diagnosed with sarcoidosis eight years ago, but only in the last year and half ago did I start experiencing the difficulty breathing, chest pain and constant burping upon slight exertion. I burp more than 100 times a day.

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Comment from: m. Rackstraw, 35-44 Female (Patient) Published: August 17

I have recently been diagnosed with Sarcoidosis. I am 40 years old, I have been suffering from weight loss, shortness of breath, chronic cough, and pain on the right side of my body (where my right lung is). I have been in so much pain for several months now, since December 2012.

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Patient Comments

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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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