Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

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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Comment from: 35-44 Female (Patient) Published: August 18

I believe I have had sarcoid since the beginning of last year, I had the dry hacking cough which took my breath away at times and was told it was a respiratory infection, night sweats and fatigue which I put down to menopause, and chest pain that landed me at the cardiologist where I was told that I was fine. This year I had pain in my chest that I could not ignore and I presented myself to Accident and Emergency where I was cleared of heart problems. They did a routine x-ray which showed shadowing in my right hilar region. My CT showed I had enlarged lymph nodes and I was treated with antibiotics for pneumonia and was to have a follow up scan in 8 weeks. While this was happening an ultrasound of my breast showed a suspicious lesion so I was sent to a surgeon. He accumulated all my history (which includes renal cancer in 1999) and sent me for a PET. The scan lit up like a Christmas tree. I was seeing an oncologist that same day who told me I have lung cancer, lymphoma or sarcoidosis and referred me to a respiratory clinic where a bronchoscope was performed and revealed I had sarcoid. I was told it is a boring disease I will have it for 1 to 30 years; it can leave at any time that most people don't even know they have it. I have had kidney and liver function tests, ECG, I have to see a cardiologist to be monitored, I have seen an eye specialist I get told everything is ok, but I don't think so. I am fatigued, I have pain in my chest, under my arms, my groin, around my rib cage, neck, and just recently my wrists hurt, and my ankles hurt I get regular headaches; not every day but since my diagnosis at the end of April I have had maybe 2 weeks pain free. Some days I get by, pain isn't intense, but some days are extremely painful. Now in my treatment plan they won't let me have steroid treatment at the moment (maybe I don't need it, I don't know) or anti-inflammatory medications because of my one kidney as these medications break up in the kidney. So at present I take Mersyndol for not so bad pain and Endone for the extreme pain. I feel that I have lost my quality of life, I feel pathetic and I feel that the medical field sweeps this disease under the carpet. My best wishes to other sarcoid patients that suffer this horrible disease (apparently boring disease according to the oncologist I have seen). Please keep sharing stories on sarcoidosis as it seems everyone suffers differently and it helps people to know they aren't alone.

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Comment from: sandy, 55-64 Female (Patient) Published: May 05

I was introduce to sarcoidosis in 2013, it runs in my family. I had a cough for a whole year and it wouldn't go away. So they removed one of the lymph nodes that was swollen, and sent it to the lab and that's when they said it was sarcoidosis instead of cancer. It's hard to deal with it because it started in my lungs, now it's all over liver everywhere, now I developed depression, and a heart disease, and it caused me to stop working after working for 15 years. I have chronic back and leg pains, shortness of breath and a series of medicines.

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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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