Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

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: Hazel, 45-54 Female (Patient) Published: May 06

I have sarcoidosis now ten years. My symptoms are getting worse now. I have bouts of being sick and tired and not fit to get out of bed. My ACE levels have gone from 48 up to 58. My doctor is of no help. I ask for steroids to help me get out of bed. I have had 3 relapses in less than 3 months. It is happening every 3 weeks now.

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Comment from: KMoore, 45-54 Female (Patient) Published: January 09

I have been to every kind of doctor there is. At first they thought I had lupus. Then recently I had an MRI of my brain and they found lesions. They thought it was multiple sclerosis. But both of those were ruled out. I just went to a rheumatologist because I have pain in almost all of my joints. I thought I had arthritis. But that was ruled out. But the doctor said that my ACE levels are high. But my chest x-rays were normal. He thinks that I may have sarcoidosis in my nervous system and wants me to have a biopsy of my nerves. I have night sweats, severe pain in my joints, numbness and tingling in my hands and legs and shortness of breath. I get bronchitis, sinusitis and pneumonia a lot, among other symptoms. But I am wondering if the lesions in my brain can be caused from Sarcoidosis.

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Comment from: Glenn, 55-64 Male (Patient) Published: December 17

It was in 1992 when I first had the symptoms of sarcoidosis uveitis. I had a skin biopsy and the results came back as positive for sarcoidosis. I went for various tests to see if the disease was affecting elsewhere but it proved that it was only my eyes. I still have problems to this day with my eyes flaring up where I cannot face artificial light or sunlight for a few hours. I am on a high dose of steroids at the moment as I recently had a flare up which stopped me from seeing out of my right eye for a period of two to three weeks. I am also on Maxidex steroid eye drops to keep the inflammation under control. I am a fit 50 year old who goes to the gym every day. As I said the only issue I have is my eyes.

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Comment from: Anita, 45-54 Female (Patient) Published: October 08

I was diagnosed for sarcoidosis some years back and I took some steroids. Of late I am unable to swallow food, feel breathless all the time, and fall prey to infections. I am unable to sit in air-conditioned place as it causes me cough and weakness.

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Comment from: jennifertp3, 35-44 Female (Patient) Published: July 30

I began having raised area to my skin on my legs. My doctor didn't notice anything. I then began to lose weight due to being unable to swallow my food. I lost 80 lbs in less than 3 months. I was sluggish and tired all the time, couldn't concentrate, and slept all the time. I have not been able to work due to weakness and numbness all over. Again the doctor said I was depressed and I had a sinus infection. It was when I went to get my annual eye exam that my eye doctor noticed a difference in my eyes. When my eye sight became blurred, I went back and my optic nerves were swollen so much so that my eyes were bleeding. I had an MRI and the next day woke up with facial paralysis to my left side of my face. Less than 6 weeks later, I had a spinal tap done and the next day woke up and the right side of my face was paralyzed. I was just diagnosed with Sarcoidosis this weekend. I was going blind also. I am scared because I don't know what is going to happen next.

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Comment from: Louise, 19-24 Female (Patient) Published: May 30

My experience with sarcoidosis has been somewhat up and down. At the start I was really bad I couldn"t breathe right. I had pain in my lungs and was feeling tired all the time. Now I am feeling a bit better, still a little pain at the bottom of my lungs, no breathing problems. I"m just thankful I'm still alive having heard a lot of the stories on this this. I"m 22 and I got diagnosed a year ago.

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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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