Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: neice, 45-54 Female (Patient) Published: November 02

I am 48 years old. I was diagnosed 1 & 1/2 years ago with sarcoidosis through a lung biopsy. I started taking prednisone about three months ago which has helped me tremendously, enlarged lymph nodes went back to normal rash on face improved, started taking 60mg has been reduced to 30 just last week starting to not feel right since. I now have pain in my legs, my since of taste has changed, tingling in lips, legs, hands and feet also have to take sleeping every night.

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Comment from: Donna, 35-44 Female (Patient) Published: October 06

My first symptom of Sarcoidosis was a severe metallic taste for around six weeks this was followed by a total loss of taste, reduced saliva production and night sweats. Severe right kidney pain, extreme fatigue, loss of balance, rapid weight loss, rapid heart rate, very low blood pressure and bilateral facial palsy. Weakness in legs, hands, arms and back, unable to walk without assistance. Tear production ceased.

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Comment from: joplin mommy, 45-54 Male (Caregiver) Published: July 26

My husband was diagnosed with sarcoidosis seven years ago. His symptoms were flu-like symptoms, which made him go to the doctor. After much testing, sarcoidosis was diagnosed. He now has scars on his hands. He coughs, has joint and chest aches and pains, and poor eyesight. He is 45 years old and is considered to be one of the youngest people to be diagnosed. Doctors in our town aren't well schooled in this, so it makes us feel helpless.

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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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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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