Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

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: 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: Lee, 65-74 Female (Patient) Published: February 19

I was diagnosed with sarcoidosis approximately 30 years ago. The interesting thing is that my mother, sister and son have also been diagnosed with the same. My son who is currently 42, has had 2 pulmonary embolisms (PEs) which it was suggested were due to sarcoidosis.

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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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Comment from: Dorothy, 45-54 Female (Patient) Published: November 20

My sarcoidosis has affected my joints (ankles and knees especially). I struggled to get out of the car, climbing stairs, etc. My lung function remained very good. I developed hard inflamed lumps on my legs but not many. They gave my general physician the clue (after many weeks) that I had sarcoidosis. I went to a rheumatologist and attended an experimental program at in Auckland, New Zealand. They were trying to gather information.

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Comment from: Dianne from Australi, 55-64 Female (Patient) Published: November 17

I am 61 and was diagnosed with sarcoidosis 20 years ago when I presented with terrible fatigue and muscle weakness and pain all over my body. I was initially treated with 25 mg of prednisone but after 6 months I was still unable to care for 3 children under 13 years of age. I changed doctors and found a doctor who was very interested in my case and put me on 75 mg of cortisone initially, and whom I was taken to see once a week to stabilize my condition. He eventually put me on a course of immunosuppressive Imuran (azathioprine) to get me off my cortisone. Unfortunately I caught chicken pox followed a fortnight later by gastroenteritis. Each time I had to stop the immunosuppressive drug so that my body could fight the infections. I was given a gamma globulin and somehow I survived. The doctors were not sure how long I would live but my specialist persevered with looking after me. Well, I did recover and I moved to the country and somehow have gained weight with my new relaxed lifestyle. All was going well except for a new very overwhelming gut disorder. I tried a new famously innovative gastroenterologist who helped the gut and I was heavier in weight than I had ever been, 55kg! Unfortunately the medications he has me on seem to have caused a flare of my sarcoidosis so I have a lot of muscle pain and at present inflamed sinuses but still I am going along and still able to maintain activities of daily living most of the time. Life has been great, nevertheless, and now with menopause I am able to do more and more adventurous activities. Before that, every time I menstruated it would cause a flare of symptoms and as I had a short cycle of every 14 to 17 days.

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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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