Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Published: July 25

I am a 29 year old female that was just recently diagnosed with Sarcoid. I have several enlarged lyophobes in my lungs and shortness of breath, hip pain and shoulder pains. I went through all of the x-rays, CT scans, pet scans, and 2 biopsies. The first doctor that I saw wrongly diagnosed me with Lymphoma, wich is cancer. When I visited a pulmonary Dr. I was told it was not a positive diagnoses, because the biopsies were not done yet. I went a month wondering what was wrong with me. And scared my family and friends with the idea that I may have cancer.

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Published: July 15

I am a 52 year-old male. I have extreme shortness of breath on exertion, constant fatigue, night sweats, skin lesions, etc. I was diagnosed with sarcoidosis in 1998 after two years of tests, X-rays, CT scans, lymph node biopsies, you name it. I finally found a specialist who was able to figure out what was going on. He put me on Advair, prednisone, and an Albuterol inhaler. The prednisone went from declining dose regimens to a constant 25 mg per day to control my lung and skin lesions. After two years of this, I developed steroid diabetes and gained a lot of weight. He suggested the Cleveland Clinic Sarcoidosis Center. They now have me off the prednisone. I am now taking methotrexate, which seems to be controlling the disease.

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Published: June 03

I was diagnosed with Sarcoidosis in 1984, this after three years of trying to get someone to listen to me and stop referring me to a psychiatrist. For three years I walked around with an increasing inability to breath and fatigue on exertion. The puzzler was that whenever I went to the doctor those symptoms were not present or a particular episode had resolved itself. Therefore, no one believed me, and being a woman did not help. Generally, when a woman presents with symptoms that are vague and unknown it is assumed that she is either hypochondriacal, or psychiatric. Needless to say this delayed the diagnosis and eventual treatment, which came as a God send because by the time I was treated I had lost 32 pounds and was loosing weight at about eight pounds a week. The current problems with Sarcoidosis are the skin involvement which I have had for the past 10 years and no one seems to think needs to be addressed. I also experience terrible arthritic pain in my feet ankles and wrists, as well as, heart palpitations. When I was young any discomfort or symptoms was often attributed to the Sarcoidosis, but as an older woman with this disease I can no longer assume that symptoms are Sarcoidosis related. For the most part I have learned to accept the fact that I will always feel tired and will be depressed from time to time and that no one will really take any of these symptoms too seriously.

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Published: May 29

My major symptoms are night sweats, shortness of breath when I reach a certain weight and when I am sleep deprived. I was diagnosed in my twenties and I find the struggle or the symptoms more accented now that I'm fifty and the weight is more of a struggle along with the added heat to the night sweats.

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Published: May 29

I am have been suffering from sarcoidosis for the past 6 years that I know of. It was discovered from a skin lesion, which I originally thought was a severe case of acne. I visited a dermotologist and was diagnosed with this dreaded disease. Since then I have encountered arthritic pain in most all my joints. I have broken two fingers and an elbow bone ( how do you break an elbow bone? -I don't know but I did) while working as a utility worker: All of which are directly related to the sarcoid. Currently, I am taking 5 prescription medications for the disease. My Bones are deteriorating, rapidly it would seem, and I am only 42 years old. If there any remedies that anyone is aware of, I would be very interested in knowing about them.

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Comment from: Tibbetts, 35-44 Female (Patient) Published: December 02

My bad experience with sarcoidosis is shortness of breath, dry scalp, eyes burning, and lately problems with my right knee. My lungs and kidneys have been affected.

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Comment from: Jolly Carol, 65-74 Female (Patient) Published: August 20

I was a truck driver hauling produce and apparently picked up the spores of fungi when loading produce. I got sick in 1993 with flu-like symptoms. I had swollen wrists and ankles and had red spots all over my body. I was put on large doses of antibiotics and sent home to my doctor, who said I had a bacterial infection. I got better, but later on, I developed swollen lymph glands and had a dry cough and again swollen ankles, night sweats and flu-like symptoms. This time the doctor did an X-ray and discovered a dark mass in my lungs. I had a bronchoscopy, which still did not answer what was wrong. Only after they did a medianoscopy did it finally tell them I had sarcoidosis.

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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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