Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: Wilma, 45-54 Female (Patient) Published: October 31

When I was diagnosed with sarcoidosis my doctor told me everything was fine and I wouldn't have to see him again even though I told him I smoked. Now 8 years later, I went to the doctor for a different reason and was told that I have pulmonary fibrosis, a fatal disease with no way to treat it. So, if you develop sarcoidosis I suggest you get a chest X-ray at least once a year; I wish I had.

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Comment from: kelly, 35-44 Female (Patient) Published: October 24

I was diagnosed with sarcoidosis through a lymph node biopsy in 2011. It was first thought that I had a recurrence of non-Hodgkins lymphoma. I cannot be treated with steroids because of my history of lymphoma and my main symptoms are severe night sweats and skin rashes. The symptoms have been almost constant since 2010.

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Comment from: kmc, 45-54 Female (Patient) Published: October 24

My sarcoidosis started in my liver, spleen and lymph nodes, not in my lungs. It was treated with 60 mg of prednisone and methotrexate. It appears it has returned after 8 years, but has returned involving my lungs as well.

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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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Patient Comments

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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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