Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: hopeful, 45-54 Female (Patient) Published: February 09

Have recently been diagnosed with sarcoidosis. I have difficulty taking a deep breath, worse when I lay down or climb stairs. Have had difficulty swallowing for about 6 weeks, some reflux. Itching and bumps on my shins. Fatigue...when I wake up after sleeping 10 hours, I could sleep another 10. Blurred vision. Joint pain, especially hips, shoulders, knees, ankles...most recently toes.

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Comment from: Judy, 65-74 Female (Patient) Published: February 07

I was losing weight without trying and also had a skin rash. My doctor sent me to a specialist for testing & the result was sarcoidosis. I was thinking I had cancer so this was a relief.

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Comment from: spclmthruv3, 35-44 Female (Caregiver) Published: January 31

I am 35 year old female that has experienced sarcoidosis in the last few years: multiple skin rashes raised bumps (possible adverse reaction to something chemically based. Sometimes often enhanced by the sun. I also have a slight cough, and the constant need to clear my throat. Fatigue is an absolute. I wake up saturated in sweat.

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Comment from: Charmaine, 35-44 Female (Patient) Published: March 14

I am a 38 year old female who has had sarcoidosis since 1997. It affects my lungs, the skin inside my nose, and my throat. I have really bad migraines, and sleep apnea. I get Remicade infusions to help me. Maybe we should all start a group to try and find a cure and to help each other.

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Comment from: Ramesh Kumar, 45-54 Male (Patient) Published: March 14

My sarcoidosis symptoms are; cough, feeling very poorly, skin inflammation, and breathing problems. The main problem is that it's been six years of having the disease, and I had treatment the first two years, then got rid of the disease. One year later it had gotten the same signs and treatment and had it for another two years. I think it will never end.

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Comment from: Denise, 35-44 Female Published: January 27

Extreme tiredness, red lumps on shins, out of breath, swollen glands in neck.

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Patient Comments

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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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