Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: sdy47, 45-54 Female (Patient) Published: October 28

I am an African American woman diagnosed with sarcoidosis in June 2013. I had a dry cough and shortness of breath for over six months. A chest x-ray was done which showed the mass. A biopsy was done and I was given the dreaded diagnosis. I was put on prednisone for 4 months which worked until they weaned me off. The sarcoidosis is now in my eyes and although no one has said I think it's in my heart. I have a rapid pulse and an irregular heartbeat. And I still have trouble breathing. I have sores around my mouth and nose. I can't sleep or eat and I am tired all the time. I just want it to go away.

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Comment from: brownsugar, 55-64 Female (Patient) Published: October 28

My right eye became very, very teary. I constantly dried it all the time. I went to my eye doctor and he asked me about a rash on the outer circle of my nose. I thought it was fungus, he said it looked like sarcoidosis, something I had never heard of. After being tested, it was just that. I have skin irritations that itch very badly, in areas you may think you have something else. When I sneeze or yawn I get cramps in my neck that brings me to a halt. I am to see a new doctor soon, I hope she can help me deal with this pain that has almost taken me from my husband.

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Comment from: SLaing1979, 25-34 Male (Patient) Published: October 15

I am a 33-year-old male. In May 2012, I experienced swelling in both of my ankles at the same time. There was some pain, when walking or placing weight on my ankles. I am a short distance runner (10-21 Km). Some swelling with new shoes or over training happens. This persisted for about 1.5 weeks, so I went to the doctor, fearing possible heart issues or circulation issues. Doctor examined my feet, X-rayed for possible bone damages due to my running. Nothing showed up there, so he did a chest X-ray. A black mass showed up on my lungs. He said lymphoma or sarcoid as possibilities, but need further testing. He did the CT Scan, blood work, liver profiles, and the ACE blood work. Finally he thankfully ruled out lymphoma and any possible heart or circulation problems. He told me I experienced the symptoms of sarcoidosis. He explained the disease, which there is not much info about. In December 2012 I was diagnosed with bronchitis. I had a hard time trying to get over it. About 2-3 weeks, with a puffer of Ventolin to help with night breathing. Same doctor explained that any lung related disorders or diseases will be that much more difficult with sarcoid! I'm still running, and have not had symptoms of sarcoid since my first one over a year ago. To my knowledge it does not affect my aerobic abilities.

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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: 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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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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