Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: RosiePosie, 65-74 Female (Patient) Published: May 30

I did not have any symptoms. I had an abnormal chest x-ray. (I have to have one per year because I take Humira, a TNF blocker for rheumatoid arthritis. I then had to have a CT scan, which showed extensive non-calcified hilar adenopathy. A blood test then showed I had sarcoidosis. I have to have a bronchoscopy done as soon as a pulmonologist can see me, and I am so scared of the procedure because I have severe problems with anesthesia. Also, I must use my voice the next day and fear injury to my vocal cords.

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Comment from: DEBRA, 55-64 Female (Patient) Published: April 24

I've had sarcoidosis for about 10 years now and still have a feeling of fatigue. I have been experiencing some symptoms that are troubling. It's like I am having an allergic reaction to things: my lips will swell, sometimes an eye, I have been getting hives, and I have a rash-like eruption on my left foot. Also, the tips of my fingers get hot, swollen and sore. I looked this one up and it is called Raynaud's syndrome or phenomenon. This is very troubling and bothersome. I'm also wondering if this is something else.

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Comment from: kwolfe, 55-64 Female (Patient) Published: April 17

I was diagnosed with sarcoidosis last August when I was hospitalized with atrial fibrillation. I had received a double fracture to my leg and ankle and then a brown recluse spider bite on my non-fractured leg. The spider bite caused severe edema of my foot and leg and my fractured leg also developed edema. A chest CT scan showed five swollen lymph nodes and blood work showed a high level of antigens. Fluid pills did not work. I had lots of IV antibiotics and those were slow to work. I developed a rash all over my body. I finally used essential oils on my leg, and after five days the swelling began to subside. I had been having sarcoid symptoms for about 10 years before the diagnosis. I had pneumonia three times in one year and strep five times. I also had numerous sinus infections and severe leg cramps and bone pain. After three months of steroid treatments, I began to improve. Then I started experiencing severe weakness in my legs and arms and had to stop the steroids. I was put on nonsteroidal anti-inflammatory meds and kept having numbness in my arms, along with dizziness. I stopped those meds and now have continuous pain in my legs and back. I also get lots of headaches and have visual disturbances. I feel tired and sickly on a daily basis. I have difficulty concentrating and memory loss, depression, and general malaise.

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Comment from: Cynthia, 55-64 Female (Patient) Published: March 29

I've had sarcoidosis for more than 20 years and am a caregiver for my mother. My symptoms include hair loss, lung and breathing problems, along with pain in my eyes and back. I hope I can continue with my life.

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Comment from: mags, 55-64 Female (Patient) Published: March 13

I have been experiencing funny turns were I feel very unwell nausiated and have a taste in my mouth I also have dry eyes and mouth and keep developing very large red inflamed lumps on and around my nose when they finaly calm down they leave scarring. .

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Comment from: minnie40, 35-44 Female (Patient) Published: March 08

I have had sarcoidosis for 5 years my doctor said I have a very hard case. I had thyroid cancer before the sarcoidosis. It started with very high fevers weight loss, night sweats and feeling very tired. I went through a battery of testing for every other disease out there. I finally went to a specialist and was told I have this disease.

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Comment from: njguy, 45-54 Male (Patient) Published: February 19

I am a white male 53 years old, and I have had sarcoidosis since 1987. Like many people, I was diagnosed with lymphoma at first, then by a gamma scan and a biopsy it came to sarcoidosis. My symptoms started with night sweats and joint pain. I refused to take steroids when initially diagnosed and still never have, and I believe that has been a benefit. I still have symptoms such as out of breath easily and fatigue. I think most of the management of joint pain and other aches is handled best for me by working out at the gym. I started on a pretty intense regimen about six years ago. Since I don't have the lung capacity to run, I do uphill on treadmill for cardio, and for the last 3 years I have done lots of weight lifting with machines. The weight lifting makes me feel great all day long.

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Sarcoidosis - Describe Your Experience Question: Please describe your 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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