Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

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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Comment from: Cat, 55-64 Female (Patient) Published: February 19

I have had a problem with asthma for many years and have been seeing a specialist for an ongoing liver problem. When with relatives for an appointment, I woke in the morning of November 2013 and said I was in trouble because I could hardly breathe and my voice was weird. When I got home the tests began. At first after a chest x-ray, and then two different biopsies they thought it was lung cancer, then lymphoma. They took out one of my lymph nodes and it came back as sarcoidosis. My breathing was getting worse, as well as night sweats and low grade fevers. I have been on prednisone since October 2014 but when it's cut way back then I'm put back up. I have developed bad fluid problems and couldn't wear the same foot-wear or clothes. Now I'm seeing an internist who has put me on a water pill and more tests because it looks like my heart isn't happy any more, I can no longer lie flat because I can't breathe. I'm so exhausted, simple little tasks have me tired and I feel like I'm going to pass out. My body is beginning to be in pain an awful lot. This doctor at least sits and talks to you. It helps to see others are in the same position as myself. Good luck to everybody.

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Comment from: Sam, 55-64 Male (Patient) Published: February 05

I was diagnosed with sarcoidosis 4 years ago, after a long period of night sweats, joint pain, breathing problems and general feeling of being tired and unwell. I had a temperature of 41 C (105.8 F) and kidney pain and was admitted to hospital. After a series of tests and being bombarded with drugs, I was finally diagnosed with the disease. It has devastated my life. It makes everything so difficult and affects my breathing, eyes, kidneys and joints. Some days I can hardly walk. I cannot believe that nobody knows what causes this and can't cure it. Taking ever increasing amounts of medicines is not helping.

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Comment from: KevinM, 45-54 Male (Patient) Published: December 31

I am of age 46, white male. My doctor suspects sarcoidosis, sometimes I have slight shortness of breath and live with a chronic cough. No other symptoms really (luckily). I've had x-ray and CT scan. It's apparently an auto-immune condition so I assume the best thing is to reduce stress and do my best to keep my spirits up. On absolutely no medicines at the moment, other than the very best one (iron pills). I'm switching between barbells and the stair climber/bicycle trainer, minimum 3 nights a week, generally 1 hour duration, and try to hold within aerobic heartrate zone while maxing out as many times as possible. I cut out caffeine and am working towards eliminating sugar. I seem to be the opposite of most other people, I'm having a supremely hard time losing body weight! Other important things, I'm keeping up with my hobbies, passionately in love with my fiancé, spending time with the kids (including active time). Live life, don't let the condition take control. If I'm lucky I'll be able to squeeze this new challenge out of my life.

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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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