Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: 55-64 Male (Patient) Published: January 06

I was diagnosed with the most badly scarred lung fibrosis the pulmonologist had seen, about 3 years ago. I also had atrial fibrillation. Prednisone and other medications seemed to help until about 6 months ago, I developed a hacking cough, started getting tired, losing weight, had joint pain and some chest pain. I have many other diseases also as heart beat now is too low, shock did not correct, I am dizzy, I have memory issues, renal kidney disease and rheumatoid arthritis among other things. I am getting discouraged especially since doctor says fibrosis has advanced to the stage of my needing to seek help at a treatment center. I am a black male and understand that this disease is worse on this race.

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Comment from: thewife, 35-44 Male (Caregiver) Published: December 17

My spouse was diagnosed with sarcoidosis 5 years ago in his lungs. When he gets sick with flu, it's severe. We have noticed that that the flu or cold is much worse with him than the rest of the family. When he gets sick, it lasts longer, and he is unable to leave the bed. He is now taking three inhalers a day, which help a lot. He was put on Biaxin, but he suffered from rare side effects from it. (Dec 2013) He can't hear. He was put on a nasal spray. It doesn't seem to work. We are in a more remote area, so it makes it difficult to obtain proper help from the right practitioners.

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Comment from: Mary, 45-54 Female (Patient) Published: December 16

I was first diagnosed with sarcoidosis when I was 36 years old. I first noticed lumps with bruises on both of my calves. Every morning I would wake up with a coughing fit for weeks and then both my knees and feet were swollen to the point I couldn't fit into my husband's size 11 shoes to get to the clinic; the pain in my knees was unbearable when I moved. I had to see a specialist and he told me it could be 10% lung cancer or 90% sarcoidosis and sent me for a biopsy. They removed a piece of my lymph nodes and found out it was sarcoidosis, I had never heard of it before. I was put on prednisone because of fatigue and no energy at all. I had 4 small children to look after back then. Now I'm 51, I developed pneumonia 6 to 8 times in the past 10 years and each time it's was very difficult to bounce back. My last CT scan couple of years back showed I have fibrosis. Now I'm short of breath, simple things like walking is a struggle, severe chest pains at times, no appetite to name a few. I was put back on steroids, inhalers, even put on antidepressant pills to calm me down when I'm struggling to breathe. Prednisone no longer works like it once did.

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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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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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