Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

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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Comment from: fran, 65-74 Female (Patient) Published: June 15

Symptoms for a decade were considered to be lupus like, until a granuloma appeared that was diagnosed through biopsy and then further tests. Sarcoidosis diagnosis was made on the basis of enlarged lymphatic nodes around the lungs, very elevated angiotensin levels, inflammatory joint reactions, fatigue and cough. Initially treated with steroids, then stopped due to problems with type two diabetes. Then on to imuran for a year, but developed melanoma, resulting in surgery and bridge graft plus lymph nodes removed and biopsied. I decided I had enough of risky drugs and tried a holistic approach to controlling or reducing inflammation. Went milk free, a challenge, and this seemed to result in more energy for me. I have also been tested and found to have mild pulmonary hypertension which at the present time my doc does not make much of it. I am a tough old gal of 70 and I have a large dog so i exercise daily with a one hour walk and three swims a week. Having said that, I am fed up with the myriad of things that do not feel right all the time. I am interested to know the latest info on Vitamin D25 and 125 related to sarcoidosis.

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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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