Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Slack, 45-54 Male (Patient) Published: January 14

I have had sarcoidosis for about 23 years and have had every test there is done, but now my skin has broke out with a bad rash.

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Comment from: Hope, 25-34 Female (Caregiver) Published: January 07

My daughter was diagnosed at 14 with Pulmonary Sarcoidosis. She had been ill since early childhood with symptoms of Crohns disease but was not diagnosed until she was 12. It took a year for the Sarcoid in her lungs to be identified (by open lung biopsy) at a leading hospital (in England). She is now 33 and in stage IV of the disease. She has been on Humira for her Crohns as well as steroids for the Sarcoid (which I think tipped her into type I diabetes when she was 18). She is now on 24 hour oxygen therapy due to the severe lung fibrosis and has a feeding rack tube for overnight nutrition to boost her weight (as well as normal feeding during the day). She is amazingly courageous and incredibly strong willed. The Medical experts and treatment has concentrated on treating symptoms they really do not understand. I hope and pray further research will lead to better treatments and a more holistic and less closed book approach for all autoimmune disease including the ones that have ravaged my daughter. In the meantime I pray each day for a miracle (and maybe that is what my daughter is) and am now looking at natural nutritional and healing remedies that may assist her.

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Comment from: Gary, 55-64 Male (Patient) Published: January 03

I have had sarcoidosis for 17 years and I am 63 years old. I am on 14 medications. I have had 3 biopsies of my lungs and my sarcoidosis is on both of my lungs. I have gone to the hospital for a discussion on lung transplants. In most cases it only last 3 to 5 years and it's been 4 years that I have been without it. I get tired easy and get shortness of breath. I use a breathing machine 4 times a day. I have good days and bad days. It takes me so long to do the things I use to do in half the time. I try to keep moving everyday.

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Comment from: Nonaperry, 45-54 Female (Patient) Published: December 27

I was diagnosed with sarcoidosis after having a severe dry cough, shortness of breath and weight loss. My symptoms started on Father's Day and lasted until Sept 30 when my doctor ordered an X-ray that revealed masses on my lungs, and confirmed it with a biopsy of the lungs. I was fine but I notice that I now have a lung sensitivity to smells, that cause me to have to take breathing treatments to stop coughing. The smells range from roses, perfumes, citronella to dust. I have since learned to cope with it. That was back in 2004. I am a black female, with no history of this disease in my family.

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Comment from: carlajrick, 35-44 Female (Caregiver) Published: November 13

My husband was diagnosed with Sarcoidosis after he was admitted to the hospital from coughing up pure blood. They did a biopsy of his lungs and found it. He now has a chronic cough, severe fatigue, and he has trouble walking. He is on a low dose of prednisone. Since we do not have health insurance it has been very difficult.

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Comment from: painfully unsure, 35-44 Female (Patient) Published: September 26

I experienced the rash on my legs, which was extremely painful. I couldn't stand clothing touching it, and had pins and needles feeling as well as aching joints, shortness of breath, swollen joints on my ankles, wrists and knees. My ankles were so swollen it affected my walking abilites for a few months.

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Comment from: sarcoid-better, 45-54 Male (Patient) Published: September 12

I have had sarcoidosis for 25 years. I am a white male, and have had a long history of allergies and lung problems. My original problems were night sweats, and joint problems. I refused steroid treatment as I was told it would treat symptoms but not the cause, which I believe to be true. My first diagnosis was lymphoma, but a biopsy showed it was not cancer but sarcoidosis. I have had numerous medical issues over the years which I believe are related, shortness of breath, arthritis in many joints, weakness, etc. Six years ago due to joint pain and back pain I began a serious effort at the gym, including weight lifting. I now go only three times a week and I am in great shape. I have very little symptoms except shortness of breath. I can do long cardio with fast walk and incline, but running still makes me feel as though I cannot breathe.

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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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