Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Stacey, 35-44 Female (Patient) Published: March 18

I was diagnosed with sarcoidosis in 2006. It took four months of me going back and forth to the doctor telling them something was wrong with me before they diagnosed it. My main symptoms were: weight loss, fever, night sweats, severe shortness of breath, swollen parotid glands, swollen eyes with blurred vision, granulomas that formed on my eye lids, general ill feeling all day, and a rash on my cheeks. Once it was finally diagnosed from a biopsy of a node from my chest cavity, the sarcoid had affected my lungs, eyes, joints, and heart. The valves in my heart were collapsing. I was on high dose prednisone for two years and Toprol XL. I have been symptom-free since 2008. I see a cardiologist and a pulmonologist on a regular basis, and they stated everything is healing well. My heart muscle is almost to normal size again. I was also told I had cancer in the beginning and was referred to an oncologist who sent me to the thoracic surgeon to do the biopsy. I am a single mother of three, that was the scariest time of my life.

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Comment from: Sarcoidosis Dialama, 35-44 Male (Patient) Published: January 27

I was diagnosed with sarcoidosis accidently about 3 years back while going through my eye sight check up. Ophthalmologists observed some white fluid behind the retina membrane. Got checked up my SrACE immediately and it was 158. Chest X-ray showed some hillers in left side. Current CT scan and PFT still show lymphocytes and obstruction respectively. Have gone through 2 cycles of Pednisone and MTX, starting from 30 mg to 0 over a period of some 24 months.Going through a very vague state of disease now. Problems are observed while tests only. No apparent symptoms or problems. Some Dr are prescribing for recycle of heavy dose of steroids and other is advising for ceasing of all medication and go forward and wait and watch for symptoms.

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Comment from: wefarm, 55-64 Female (Patient) Published: January 26

My sarcoidosis presents itself with reoccurring bronchitis, asthma, and sinus infections. I was diagnosed after an abnormal x-ray which lead my specialists to suspect lung cancer. I underwent a bronchoscopy during which time my caregiver took biopsies of any and all suspicious scars. I do have numerous scars in my lungs do to repeated pneumonia including MRSA pneumonia four years ago. It is VERY difficult for me to obtain information about this disease from my specialists. I have been given NO guidance as to how to adjust my lifestyle in order to improve my situation.

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Comment from: renee renee, 45-54 Female (Patient) Published: August 08

The symptoms that I experience was shortened of the breathe, fatigue and TIA's, I didn't know what was going on until I received the Big TIA's....

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Comment from: carol, 55-64 Female (Patient) Published: July 18

i have just been diagnosed with sarcoidosis It took months to know exactly what it was. Symptoms included feeling tired, slow heart rate, pulvertations. Had so many tests. One day went in for broncoscopy because there were shadows on the lungs and swollen lymph glands. They didn't do the test but took me straight into hospital due to my heartrate which was 35bpm. Had a load of tests where they found i had 30% block heart. Had to have pacemaker and defibrillator in one. That was a few days ago ,going back to see the specialist who has informed me i will be put on prednisone i think positive but i worry about what the future holds ,work etc.

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Comment from: Maxi, 55-64 Female (Patient) Published: July 17

I started have symptoms in 2007 I was 52 years old, it started with a dry cough, at first I was told I had TB as I am of an ethnic background (white father, black mother), living & working in China for many years, and my mother died at age 37 when I was only 6 of lung disease which was thought to have been TB, however now the doctors think she may have had Sarcoidosis too. I get dreadful night sweats, and Fatigue I also get ear infection and sinus infection all the time. It is an insidious disease with so little know about it I have decide to take matters into my own hands, I have stop taking the prednisone (with all its side effects), got myself on a vegan diet and excise routine, and although the Sarcoidosis is still spreading slowing through my lungs I have started to feel a lot better in myself. I also starting using a Turboforte Respiratory Device which has improved my lung capacity I have been able to start walking my dog again and enjoy life again for the first time in years

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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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