Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

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: mary, 55-64 Female (Patient) Published: April 08

I am a 57 year old female and have been living with sarcoidosis since 1995, it makes me weak all of a sudden and takes my strength away. The same doctor for years has been telling me it's active and bumps up my steroid but so what, I am feeling like I am happy and ready to go but it has me feeling weak with no energy today. I am seeing another doctor this month, but one thing I am going to forbid people from smoking in my house and I suggest you all who have it do the same. Because this doctor today did ask me if am I around someone that smokes and sometimes I am around people that smoke.

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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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Comment from: Healthy 57, 55-64 Female (Patient) Published: December 16

I had sarcoidosis 35 years ago, shortly after my second child was born. I had raised lumps on my legs then ache in my joints, lost weight, and had trouble breathing. It became hard to walk. After several tests and much confusion a chest x-ray showed swollen lymph nodes and something on my lungs. A biopsy showed that it was sarcoidosis which I had never heard of. It went away on its own and I haven't had a problem since though it left some scar tissue in my lungs.

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Comment from: Lisa b, 45-54 Female (Caregiver) Published: December 12

My mom had sarcoidosis and was around 50 when she was diagnosed. We were originally told it was asthma but after a biopsy sarcoidosis was confirmed. Her symptoms got progressively worse over the years to the point where a slight change in temperature or eating certain foods made her have a severe coughing fit. She was put on oxygen while she moved around but it eventually increased to be full time. A few years later she was out on the transplant list and the strength of her oxygen increased month by month. She was soon no longer able to leave then house as too much movement made her oxygen levels drop dangerously low. Unfortunately her transplant never came in time and she sadly passed away early this year at the age of 52.

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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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