Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

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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Comment from: Tammy, 45-54 Female (Patient) Published: September 12

I have had Sarcoidosis for seven years and it went to my lungs. I have pulminary phibrosis. This disease has taken a lot from me and this last week I had my spleen removed, I'm thinking it was lymphoma. I am not so sure now. I am so tired of this disease and all that goes with it.

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Comment from: Enthusios, 55-64 Male (Patient) Published: June 26

I am a 57 years old black male who was first diagnosed with sarcoidosis in 1995. It nearly killed me. I spent a month in the hospital until I finally found a specialist in Philadelphia who knew what she was doing. I had severe lung involvement and skin rash on my shins. I was treated with high doses of Prednisone and Prilosec for my stomach. It took a full year to resolve. I had another episode in 2007. They added Imuran to the Prednisone. I recovered in about 5 months. I am now experiencing symptoms again and have an appointment with my Pulmonologist. I have no choice but to deal with this thing one day at a time. God Bless to all who suffer with this awful disease.

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Comment from: Pray for a Cure, 55-64 Female (Patient) Published: May 30

I started having symptoms of sarcoidosis when I was 10 years old; persistent cough that was so bad I couldn't catch a breath. Doctors at that time would only prescribe cough syrup, which did not work. The cough would go away for a few years and then return with a vengeance throughout my school years. In my 40s I started having severe eye problems (iritis). I was tested for TB, Lyme disease and lots of other diseases that I can't remember the names of. In my early 50s, the severe cough came back and never went away. I would cough so hard I couldn't breathe. I also started having issues with my heart (arrhythmias). Sarcoidosis was diagnosed by mediastinal biopsy. It was in my lungs and lymph nodes. Now my skin and heart are involved and doctors are watching my nervous symptom, kidneys, and liver. I am now disabled due to sarcoidosis and am in Stage IV (last stage) of the disease. I was on prednisone for over 10 years and have been on methotrexate for the last year. Now my body is rejecting that medication and the cough is back. I see the sarcoidosis specialists at National Jewish Health and they really stay on top of everything concerning this disease. My doctor at NJH said we will probably have to try another medication as there are still a couple more to try. It's a dreadful disease and hope every day they find a cure.

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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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