Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Tammy, 45-54 Female (Patient) Published: September 12

I have had Sarcoidosis for seven years and it went to my lungs. I have pulminary phibrosis. This disease has taken a lot from me and this last week I had my spleen removed, I'm thinking it was lymphoma. I am not so sure now. I am so tired of this disease and all that goes with it.

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Comment from: Enthusios, 55-64 Male (Patient) Published: June 26

I am a 57 years old black male who was first diagnosed with sarcoidosis in 1995. It nearly killed me. I spent a month in the hospital until I finally found a specialist in Philadelphia who knew what she was doing. I had severe lung involvement and skin rash on my shins. I was treated with high doses of Prednisone and Prilosec for my stomach. It took a full year to resolve. I had another episode in 2007. They added Imuran to the Prednisone. I recovered in about 5 months. I am now experiencing symptoms again and have an appointment with my Pulmonologist. I have no choice but to deal with this thing one day at a time. God Bless to all who suffer with this awful disease.

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Comment from: Pray for a Cure, 55-64 Female (Patient) Published: May 30

I started having symptoms of sarcoidosis when I was 10 years old; persistent cough that was so bad I couldn't catch a breath. Doctors at that time would only prescribe cough syrup, which did not work. The cough would go away for a few years and then return with a vengeance throughout my school years. In my 40s I started having severe eye problems (iritis). I was tested for TB, Lyme disease and lots of other diseases that I can't remember the names of. In my early 50s, the severe cough came back and never went away. I would cough so hard I couldn't breathe. I also started having issues with my heart (arrhythmias). Sarcoidosis was diagnosed by mediastinal biopsy. It was in my lungs and lymph nodes. Now my skin and heart are involved and doctors are watching my nervous symptom, kidneys, and liver. I am now disabled due to sarcoidosis and am in Stage IV (last stage) of the disease. I was on prednisone for over 10 years and have been on methotrexate for the last year. Now my body is rejecting that medication and the cough is back. I see the sarcoidosis specialists at National Jewish Health and they really stay on top of everything concerning this disease. My doctor at NJH said we will probably have to try another medication as there are still a couple more to try. It's a dreadful disease and hope every day they find a cure.

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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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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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