Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: WA Girl, 45-54 Female (Patient) Published: January 19

I have been very healthy all of my life. Two years ago, I had pain in my chest. I thought it was heart attack and went to the emergency room. The nurse heard 'rubbing' in my lungs, and said it was pleurisy, an inflammation of the lining of my lungs. Painful, but with ibuprofen, manageable. But two years later, my doctor was baffled by the continued extremely painful pleurisy, and sent me for an x-ray, then a CT scan. There were two huge tumors in my lungs. I cannot tell you my shock. Within weeks, I had surgery to remove one tumor and part of a lung. Diagnosis, sarcoidosis. I was told, at least it's not cancer; yes, but what is sarcoid! The pulmonary doctor put me on 40 mg of prednisone, then 30, and now 10 for a year. Last x-ray showed remaining tumor is 90 percent gone. I should be elated, but I have to say, I'm scared; why do I have sarcoid, what did I breathe, and how can I avoid breathing it again. Will this affect other parts of me? No answers. So I am glad to see others managing sarcoidosis, but I am also left feeling very uneasy. I want to kick this disease, but I don't know how to do it.

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Comment from: Marie, 55-64 Female (Patient) Published: January 12

I started losing weight (unexplained) so I went to my doctor who told me that as I get older my weight shifts. I said I understand but I'm not shifting I had lost 37 lb. I asked for a body scan which stated I had active lymphoma (hilar, liver, spleen and supraclavicular areas). I got the results the same day. I went to doctor because of the severe left sided pain that was usually the worst in the mornings. I was told that I needed to see an oncologist and surgeon but first I needed to get a biopsy done so I went for a biopsy of the supraclavicular node which resulted in unsuccessful diagnosis. Then I had a bronchoscopy done which was unsuccessful so I was frustrated, hurting and mad. The oncologist told me that I needed to have my spleen removed so I did. Then 2 weeks later I was told I have sarcoidosis for which I am being treated with prednisone. In the meantime I am fighting with my cancer policy which wants to pay nothing on my bill because it wasn't cancer but all my tests stated active lymphoma until two weeks post-operation, and I have a breakdown of hospital and initial diagnosis. My oncologist told me this is as close to cancer as you can get. I have pain in my right upper region under my breast and my left buttock cheek hurts daily. I'm frustrated because in this day time the right diagnosis should be able to be confirmed through the technological age we are in. My fellow sarcoid friends you are not alone.

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Comment from: sickofpain, 35-44 Female (Patient) Published: December 31

I was diagnosed with sarcoidosis after the doctors thought I had breast cancer. I have it in my nodes. I also have shortness of breath, chest pain and a hard time breathing after just a little bit of exertion. I am on steroid inhalers and rescue inhalers. What bugs me more is the pain; back, neck, joints, and horrible headaches. I think it may be in my mouth because I have sores in the corners of my mouth now for two months and I had a couple of bumps on the roof of my mouth.

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Comment from: leanndwalters, 19-24 Female (Caregiver) Published: November 06

My daughter had a baby boy by C-section in May, she is 21 years old. She had severe pain a month afterwards and went to the emergency room (ER). They found lesions on her spleen and she was referred to an oncologist. The oncologist did a PET scan and diagnosed her with stage 3 to 4 lymphoma. They did biopsy of lymphoid tissue in her lungs and found out it was sarcoidosis. They sent her to a pulmonary doctor who did nothing and now a rheumatologist who started her on 40 mg of prednisone for the past 8 weeks. Prednisone has done nothing for her and the disease is now in her liver. I don't know what to do.

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Comment from: lottofreak55, 55-64 Female (Patient) Published: October 15

I am a 57 Year old female. I had a cough that wouldn't go away. Doctor had me change my medicines, but it didn't help. He sent me for a CT scan of the head and chest. With these results doctor told me and my husband that I had cancer or Hodgkin's lymphoma. Steroids seemed to make the cough go away. I also had a bad sinus infection. I had surgery for a biopsy of my lung and it was determined it was sarcoidosis. Then a few months later I had the sinus surgery. Here I am again with the cough and achy knees and I cannot taste or smell anything. I begged my doctor to put me back on steroids to help so I could taste and smell again. I am hoping I can find a doctor out there that knows about sarcoidosis and not dismiss it as a nothing 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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