Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Published: July 25

I am a 51 yr old black woman and I have sarcoidosis. I was misdiagnosed initially for 3 yrs. (1981 - 1984) my case was severe. At 24 yrs old I had sarcoid in my bones (from head to toe), my skin, and nasal passages. I was treated with prednisone for 20 years. At 24 yrs old, my joints were brittle and had holes. Granulomas formed on my face and I have had 3 surgeries on my tear ducts (both eyes). I happy to say my bones have rejuvenated, (medically impossible), I have flawless skin, and I can breathe thru my nose. I have been off prednisone to for 3 yrs. I'm now a beauty consultant and I feel good!

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Comment from: Mags, 55-64 Female (Patient) Published: March 06

I was diagnosed with sarcoidosis 4 years ago and am still dealing with it. I do know that if I get fatigued my symptoms get worse. Also, I get severe laryngitis on the onset and of course, the cough.

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Comment from: nicedreams, 45-54 Male (Patient) Published: January 17

After about 5 years I have been diagnosed with sarcoidosis, and having a lung biopsy. I have swelling in feet and ankles and am in extreme pain to walk, almost the same as gout symptoms. I also have red spots around the inflamed area.

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Comment from: Grant38, 35-44 Female (Patient) Published: November 07

I was diagnosed with sarcoidosis in August. I didn't have any symptoms, but went to the doctor for blood pressure follow up. They took my oxygen and it was 68. They immediately admitted me to the hospital, where I spent 8 days taking all types of test. They first said I had congestive heart failure, then cancer. Then they came up with sarcoidosis. I'm currently only on oxygen throughout the day to make sure it doesn't drop, which has done the trick so far.

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Comment from: aliceanne, 65-74 Female (Patient) Published: October 31

I was born in 1946 and first diagnosed with Sarcoidosis at the age of 4. I don't remember anything about that. At the age of 25 I was hospitalized with sarcoidosis. I spent 5 days in the hospital. Every intern and doctor met with me. Sarcoidosis is rare, so I was told. I was never treated with any drugs, just required bed rest. I haven't had an episode since. Sometimes, depending on the doctor, I have received different evaluations. Weird disease!

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Comment from: Wilma, 45-54 Female (Patient) Published: October 31

When I was diagnosed with sarcoidosis my doctor told me everything was fine and I wouldn't have to see him again even though I told him I smoked. Now 8 years later, I went to the doctor for a different reason and was told that I have pulmonary fibrosis, a fatal disease with no way to treat it. So, if you develop sarcoidosis I suggest you get a chest X-ray at least once a year; I wish I had.

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Comment from: kelly, 35-44 Female (Patient) Published: October 24

I was diagnosed with sarcoidosis through a lymph node biopsy in 2011. It was first thought that I had a recurrence of non-Hodgkins lymphoma. I cannot be treated with steroids because of my history of lymphoma and my main symptoms are severe night sweats and skin rashes. The symptoms have been almost constant since 2010.

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Comment from: kmc, 45-54 Female (Patient) Published: October 24

My sarcoidosis started in my liver, spleen and lymph nodes, not in my lungs. It was treated with 60 mg of prednisone and methotrexate. It appears it has returned after 8 years, but has returned involving my lungs as well.

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Patient Comments

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Sarcoidosis - Symptoms Question: What symptoms did you 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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