Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: nicedreams, 45-54 Male (Patient) Published: January 17

After about 5 years I have been diagnosed with sarcoidosis, and having a lung biopsy. I have swelling in feet and ankles and am in extreme pain to walk, almost the same as gout symptoms. I also have red spots around the inflamed area.

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Comment from: Grant38, 35-44 Female (Patient) Published: November 07

I was diagnosed with sarcoidosis in August. I didn't have any symptoms, but went to the doctor for blood pressure follow up. They took my oxygen and it was 68. They immediately admitted me to the hospital, where I spent 8 days taking all types of test. They first said I had congestive heart failure, then cancer. Then they came up with sarcoidosis. I'm currently only on oxygen throughout the day to make sure it doesn't drop, which has done the trick so far.

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Comment from: aliceanne, 65-74 Female (Patient) Published: October 31

I was born in 1946 and first diagnosed with Sarcoidosis at the age of 4. I don't remember anything about that. At the age of 25 I was hospitalized with sarcoidosis. I spent 5 days in the hospital. Every intern and doctor met with me. Sarcoidosis is rare, so I was told. I was never treated with any drugs, just required bed rest. I haven't had an episode since. Sometimes, depending on the doctor, I have received different evaluations. Weird disease!

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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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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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