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: emedicinehealth, 35-44 Female (Patient) Published: December 24

My brother is suffering from psoriasis from last 7 years and recently doctor said he is having another form of psoriasis also.

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Comment from: Marc, 55-64 Female (Patient) Published: October 13

To get rid of gallstones I decided to try the liver and gallbladder cleansing.

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Comment from: CC, 65-74 Female (Patient) Published: July 10

I was diagnosed with sarcoidosis 2004 with involvement of lungs and eyes. I had a prednisone regime followed by a year and a half of methotrexate. I thought I had stabilized. Now, I seem to be recovering from episodes of uncontrollable dry hacking cough in mornings and at any time of the day. However, recently, I was diagnosed with sarcoidosis skin lesions and one basal cell carcinoma. The biopsies and surgical removal of basal cell wouldn't heal. I ended up on super antibiotic ointment and it is working. Good luck to all.

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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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Patient Comments

Viewers share their comments

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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