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: Lee, 65-74 Female (Patient) Published: February 19

I was diagnosed with sarcoidosis approximately 30 years ago. The interesting thing is that my mother, sister and son have also been diagnosed with the same. My son who is currently 42, has had 2 pulmonary embolisms (PEs) which it was suggested were due to sarcoidosis.

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Comment from: 65-74 Female (Caregiver) Published: October 30

My wife was getting regular chest pain with exercise and I presumed that this was due to inflammation of her lung lymph nodes (she has sarcoidosis with lung involvement). I decided to try a benign experiment with her by treating her using a steam inhaler with a dab of medicated ointment (Rawleigh) containing anti-inflammatory eucalyptus oil, camphor and menthol on top of the water. After a few treatments she started to get better and now she is symptom free with no further use of the inhaler. It was worth the try.

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Comment from: L Corkery, 65-74 Female (Patient) Published: October 21

I was diagnosed with sarcoidosis at age 27. I had lymph node removed. My mother also was diagnosed with sarcoidosis. She was in her 50s. I have suffered for years from iritis. Most recently I developed granulomas on my knuckles.

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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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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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