Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Hazel, 45-54 Female (Patient) Published: May 06

I have sarcoidosis now ten years. My symptoms are getting worse now. I have bouts of being sick and tired and not fit to get out of bed. My ACE levels have gone from 48 up to 58. My doctor is of no help. I ask for steroids to help me get out of bed. I have had 3 relapses in less than 3 months. It is happening every 3 weeks now.

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Comment from: Louise, 19-24 Female (Patient) Published: May 30

My experience with sarcoidosis has been somewhat up and down. At the start I was really bad I couldn"t breathe right. I had pain in my lungs and was feeling tired all the time. Now I am feeling a bit better, still a little pain at the bottom of my lungs, no breathing problems. I"m just thankful I'm still alive having heard a lot of the stories on this this. I"m 22 and I got diagnosed a year ago.

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Comment from: nana vw, 55-64 Female (Patient) Published: April 08

I am a 63 year old female. In 2007 I had a traumatic back injury and developed pneumonia following the surgery. When I did not recover with antibiotics they did a chest x-ray and discovered the scar tissue. I was followed by several different specialists, but never received any treatment until I was referred to a pulmonary doctor by my family doctor! He began treatment 1 month ago! I have chronic obstructive lung disease, with nodules, my eyes are impacted, I have a CPAP machine for sleeping, and was started on prednisone and methotrexate 3 weeks ago finally! Sad there was no treatment for the sarcoidosis for 7 years!

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Comment from: ms. tricia, 55-64 Female (Patient) Published: March 19

I was diagnosed with sarcoidosis at age 40, I am now 61. This is a chronic disease that periodically goes into remission. My eyes, lungs and skin were affected. The mystery behind this disease is the worst part I have to cope with; not knowing what triggers a flare-up, and I am diabetic from long term use of steroids to treat this disease.

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Comment from: Mags, 55-64 Female (Patient) Published: March 06

I had sharp pains in my legs which is being treated with Lyrica which helps with nerve pain and achiness. My newest symptom of sarcoidosis is dry cracked feet. I do live in Minnesota which doesn"t help.

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Comment from: lynn, 19-24 Female (Patient) Published: March 21

I stared having pain my 10th grade year of high school and I started losing weight like crazy. Within one week I lost 15 pounds. I was 16 at the time, it wasn't till I was 18 when they finally told me what it was. I had shortness of breath (splinting) and stared to sleep all the time and get sick very easily. I was in and out of the hospital my 11th grade year. Finally I found a doctor who know what I had! The other doc. said I had to get surgery to see what it was but thankful I didn't have to but they did say some time down the line I might have to.

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Comment from: carol, 13-18 Female (Patient) Published: December 07

I was diagnosed with sarcoidosis at the age of 16. I am of Nordic background. My kidneys started to bleed and I was holding fluid in my tissues. This may have occurred at the same time as the sarcoidosis I was very tired and would be out of breath climbing the stairs. I developed several red raised areas on my skin. I felt down at this time. I was put into the hospital for five weeks and after an x ray they said my lungs looked like a snowstorm. They diagnosed this illness from a biopsy they took of the red mark on my arm. I was put on decedron a cortisone drug. I remained on that for a year and the symptoms went away except for a little scar tissue in my lungs.

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Published: December 07

Since I was young I have had shortness of breath, and doctors never thought it was anything so just left it alone. As I got older I started getting heart palpations. I went to a doctor for something unrelated and happen to mention it and he suggested an X-ray which showed a spot on my lung. With further testing and a lung biopsy they found it was sarcoidosis. After seeing a specialist he treated me with advair and steroids. I haven't had issues for a few years.

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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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