Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: Always hopeful, 65-74 Female (Patient) Published: April 26

At the age of around 12 years I woke up one night with both my shoulders hurting. During those formative years, I was told it was all in my head. At around age 30, I was told I had adult onset asthma. This was granulomas in the lungs. Finally I found a doctor at age 60, who did a routine blood test for the annual physical, and in my next visit, the doctor informed me I had sarcoidosis. More is known now than then, the pain(s), vision issues, mood swings, fatigue, etc., hyperparathyroidism (these glands are supposed to control the amount of calcium going to the bones, but when they malfunction they direct the calcium to the kidneys), and now there are kidney stones, and unbelievable diet restrictions. My wishes to all who suffer for relief.

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Comment from: MelanieR, 45-54 Female (Patient) Published: April 08

I am 47 diagnosed with sarcoidosis last fall, but suspected I had it for a few years and finally researched a doctor and made my own appointment at a sarcoidosis clinic. The doctor agreed since I had a liver biopsy with granuloma and I insisted on a biopsy of some of the skin tissue on one of my tattoos that have raised tissue and showed a granuloma. At the time I also had lesions in my fingers and forearms, as well as bone lesions at my wrists. He prescribe Plaquenil since I wanted to stay away from steroids because I am already diabetic. The scar tissue and lumps in my forearms have just about dissipated but my concern now is the amount of fatigue and pain in my legs and hands. I have been to a physiatrist for chronic nerve pain down my arm, he said it wasn't from the neck, and that his EMG indicated some possible carpal tunnel. The pain in my hands is sharp shooting pains at times, other times just aches. My legs ache all the time and if I sit for a period I'm like a 95 year old when I get up; it takes a few steps to get the leg stiffness and motion to get going.

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Comment from: Teresa, 55-64 Female (Patient) Published: February 22

I am a 57 year old female and I was told I had sarcoidosis after I had a section of my lung removed for a biopsy because they thought I had lung cancer in October 2014. The biopsy showed granulose tissue and they confirmed that I did have sarcoidosis. I'm telling you that surgery hurt so bad that I told my primary doctor that I will never have lung surgery again. Now since that time they have found that I also have it in 6 places in the skull bones in my brain and they removed a section of my skull to biopsy and it also showed sarcoidosis. Now I have it on my bottom left shin and left arm. I have been in the hospital for two weeks with this because three different bacteria got in the sarcoidosis knots on my arm and my leg. The doctors keep telling me that I am the only patient they have seen in a very long time that has this disease on the inside and the outside. Lucky me! The joint pain, fatigue and shortness of breath are getting really bad and I wake up feeling like I haven't slept at all and then can hardly walk because of the pain. I have been on up to 50 mg of prednisone and 20 mg of methotrexate and I hate this stuff. I don't think it has helped put me in remission at all. While everyone else is losing weight with this disease I have gained back 50 pounds that I had lost in the last year and a half. I am miserable and trying to decide if I am going to have to quit work or not. I don't want to but I am barely moving at this point which is not fair to my co-workers. I love work but the pain is getting so bad. I'm a multitasker for sure and not being able to do a lot of things and having no memory at all has been so discouraging to me. I really feel like I will die soon because things are not getting much better.

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Comment from: Lisa, 45-54 Female (Patient) Published: February 11

I'm not really sure when I became ill with sarcoidosis. I remember having swelling between my legs outside my lady parts, and also swelling under my arms. I did not seek any medical attention for those. I used to choke while drinking water. I did mention this to my primary care physician (PCP), and he suggested an ear, nose, and throat doctor, whom I didn't contact. My sinuses became swollen, and I couldn't smell anything. Then I had ringing in both ears which I thought was brought on by my job. I became ill with pneumonia which would not respond to medication, so my PCP sent me to a pulmonary specialist. I had a bronchoscopy which was inconclusive. Next a lobectomy was done which was incredibly painful. The diagnosis was sarcoidosis. I continued working full time. I've had extremely painful swollen knees. My PCP sent me to an orthopedist where I got injections of steroids in my knees to treat the arthritis. Walking to my work area became unbearable because I couldn't catch my breath while climbing stairs. Presently, I'm disabled and not working. I have no support. After doing the 6 minute walk at the pulmonary doctors, my oxygen saturation fell to 80. I'm now on oxygen, told to use it 24/7. My pulmonary doctor hasn't discussed anything with me concerning my condition, or stage of disease. Where I live there is only one practicing group of pulmonary doctors who will take my insurance. I'm depressed, and anxious. When I try to walk any kind of distance my pulse skyrockets and my oxygen level plummets. I don't work, and it's like I'm waiting to die.

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Sarcoidosis - Symptoms Question: What symptoms did you 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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