Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Mags, 55-64 Female (Patient) Published: March 06

I had sharp pains in my legs which is being treated with Lyrica which helps with nerve pain and achiness. My newest symptom of sarcoidosis is dry cracked feet. I do live in Minnesota which doesn"t help.

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Comment from: lynn, 19-24 Female (Patient) Published: March 21

I stared having pain my 10th grade year of high school and I started losing weight like crazy. Within one week I lost 15 pounds. I was 16 at the time, it wasn't till I was 18 when they finally told me what it was. I had shortness of breath (splinting) and stared to sleep all the time and get sick very easily. I was in and out of the hospital my 11th grade year. Finally I found a doctor who know what I had! The other doc. said I had to get surgery to see what it was but thankful I didn't have to but they did say some time down the line I might have to.

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Comment from: carol, 13-18 Female (Patient) Published: December 07

I was diagnosed with sarcoidosis at the age of 16. I am of Nordic background. My kidneys started to bleed and I was holding fluid in my tissues. This may have occurred at the same time as the sarcoidosis I was very tired and would be out of breath climbing the stairs. I developed several red raised areas on my skin. I felt down at this time. I was put into the hospital for five weeks and after an x ray they said my lungs looked like a snowstorm. They diagnosed this illness from a biopsy they took of the red mark on my arm. I was put on decedron a cortisone drug. I remained on that for a year and the symptoms went away except for a little scar tissue in my lungs.

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Published: December 07

Since I was young I have had shortness of breath, and doctors never thought it was anything so just left it alone. As I got older I started getting heart palpations. I went to a doctor for something unrelated and happen to mention it and he suggested an X-ray which showed a spot on my lung. With further testing and a lung biopsy they found it was sarcoidosis. After seeing a specialist he treated me with advair and steroids. I haven't had issues for a few years.

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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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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?
Coping with sarcoidosis Question: How have you been able to cope with your sarcoidosis?

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