Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: fighter, 45-54 Female (Patient) Published: July 12

I found out in 2004 when I could not walk 10 steps without being tired that I had sarcoidosis. While driving I had to stop when I found myself having to pull over and sleep for a few minutes. Even now I cannot overdue too much and cannot enjoy the sun without breaking out in severe rash on hands and arms. My chest is always tight and I find myself needing a fan for more air daily and to try to avoid stress, for this can drain energy even more in weakness. Yet through it all, I won't give up and let it beat me.

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Comment from: Irima, 35-44 Male (Caregiver) Published: June 26

Hello I am from Romania, a country where sarcoidosis is very rare, but still it exists. 12 years ago my husband was diagnosed with this disease. At first doctors said it was cancer and he has 6 months left to live. After more investigations they finally said it was sarcoidosis (lungs were affected) and told him to take prednisone. He consulted a naturist doctor, and followed a naturist treatment, and he got well. He was 100 percent cured. Now after 12 years it seems the disease reappeared, he still needs to have some tests.

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Comment from: Leila, 45-54 Female (Patient) Published: June 07

Being a healthy 48 year old female, my ordeal started out with an annual physical, then came the mammogram that showed enlarged lymph nodes. After a breast biopsy (negative for Breast Cancer), PET Scans and two axillary lymphadenectomy, (1 right and 1 left), night sweats that I attributed to menopause (not the case). In Oct. 2011, I was diagnosed with sarcoidosis. After taking prednisone 20 mg for four months and not having any relief of pain or inflammation I decided to discontinue medication against my doctors advise. I also gained over 60 lbs while on steroids. My pain is as intense as it was while on prednisone.

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Comment from: 25-34 Male (Patient) Published: May 03

Looking back, I began experiencing symptoms of sarcoidosis in high school. My symptoms were shortness of breath and I never seemed to get enough sleep. I played sports all through high school and was in excellent physical condition. It wasn't until I was 24 when I was officially diagnosed with sarcoidosis. I went into the hospital with pneumonia-like symptoms. X-rays showed major damage to my lungs. Now it's six years later and I am still managing the illness.

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Comment from: Geo, 35-44 Female (Patient) Published: January 24

I just recently found out I have sarcoidosis. I have had a dry cough for 9 years and never could get rid of it. I was always tired and somewhat depressed. Recently I was involved in a car accident and the hospital took X-rays of my lungs. It showed lots of scarring and my lymphnodes were swollen. They did a biopsy of my lungs and diagnosed me with the sarcoidosis disease. I am 44 years old and still in shock because they don't know much about this disease or really how to treat it. I'm looking for a support group to help me get through this.

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Comment from: rasham, 45-54 Female (Patient) Published: October 25

Initially low grade fever and tiredness till the time fever stayed. Investigations done to find the cause of fever, x-ray, ct scan and a bronchoscopy later, sarcoidosis confirmed. Right now taking a course of anti-inflammatory drugs but will avoid steroids at any cost because my doctor says it will sure shot trigger kochs(tb). So living with fever at times and swollen ankles, no other symptoms as such.

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Comment from: Christine, 45-54 Female (Patient) Published: August 10

First symptom was all my joints. This I found was the most painful. Then was my saliva glands. Biopsy detected sarcoidosis. Then in my eyes. This is on off quite a lot. The latest symptom is lumps in cheeks.

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Comment from: flowerquilt, 45-54 Female (Patient) Published: July 07

Dry cough for several months. Then was diagnosed with pneumonia. Finally saw my regular family doctor who ordered chest x-ray.

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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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