Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: Najramnos, 55-64 Female (Patient) Published: January 23

In early childhood I had continuous issues with ear aches, swollen glands in neck beneath jaw, pneumonia/UR (upper respiratory) infections and viral infections. I "grew out" of most of that, toxemia and 3 pregnancies. I was diagnosed with rheumatoid arthritis in my 4os, had prednisone/methotrexate for several years and diagnosed sarcoidosis myself 5 years after enormous weight gain/brittle bones. Within a year I was hospitalized with pneumonia and the doctor found sarcoids on my lungs. Shortly after I developed ulcer-type sores in my lower legs which spread over the right side of my body; itching painful growths emerged from healed ulcers sites. I have granulomas on healed areas of skin now. I have been to various local doctors regarding my skin ulcers, none of whom could tell me what these growths were; nor ran tests, till one finally referred me to dermatologist. He has just started tests and referred me to rheumatologist. It has been a long, frustrating and painful year. I moved to rural upper Midwest area 2 years ago and not one doctor requested previous medical records.

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Comment from: Char24, 55-64 Female (Patient) Published: January 16

I am a 57 year old female. I was diagnosed with sarcoidosis in 1992. I was fit, active and quite healthy, until I starting running a low grade fever and I started to have extreme pain in my body from my waist down. I always used the stairs at work and I began to notice shortness of breath and fatigue. I had sternal pain I then got EN (erythema nodosum) on my lower legs. Right before Christmas the pain increased and I got a dry cough. I finally had to use the elevators and sit down several times during my shift. I had the week between Christmas and New Year off and right before I was supposed to go back to work the EN got really bad and was causing more pain. I went to see a doctor and he explained that you can get EN for many reasons but because of the symptoms I was experiencing in my chest he ordered a chest x-ray. It showed many enlarged lymph nodes. The doctor referred me to a pulmonary specialist. He performed a bronchoscopy but the findings were inconclusive. I was then referred to a thoracic surgeon. During the time I saw the first doctor up to when I had a mediastinectomy, it was over 4 months. No doctor would allow me to take anything for the pain but Tylenol, because if the diagnosis was lymphoma it could cause more problems. I was put on 50mg of prednisone for several months and then the dosage was lowered and after taking steroids for a year I finally was weaned off them. I got along quite well for 2 years and then I was in and out of the hospital with pancreatitis. My liver enzymes were elevated and after having a scan it showed my gallbladder was not working. I had my gallbladder removed, had surgery to cut the duct so it would stay open and drain. I was back on the steroids. Finally about 6 years ago I made the decision to never take steroids again. Then 2 years ago my bones started to break down and I had a hip replaced and had some of my cervical vertebrae fused. I have gastroparesis, myelomalacia and some days I can hardly walk. My eyes are starting to burn and hurt and it has affected my vision. My equilibrium is bad.

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Comment from: 55-64 Male (Patient) Published: January 06

I was diagnosed with the most badly scarred lung fibrosis the pulmonologist had seen, about 3 years ago. I also had atrial fibrillation. Prednisone and other medications seemed to help until about 6 months ago, I developed a hacking cough, started getting tired, losing weight, had joint pain and some chest pain. I have many other diseases also as heart beat now is too low, shock did not correct, I am dizzy, I have memory issues, renal kidney disease and rheumatoid arthritis among other things. I am getting discouraged especially since doctor says fibrosis has advanced to the stage of my needing to seek help at a treatment center. I am a black male and understand that this disease is worse on this race.

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Comment from: thewife, 35-44 Male (Caregiver) Published: December 17

My spouse was diagnosed with sarcoidosis 5 years ago in his lungs. When he gets sick with flu, it's severe. We have noticed that that the flu or cold is much worse with him than the rest of the family. When he gets sick, it lasts longer, and he is unable to leave the bed. He is now taking three inhalers a day, which help a lot. He was put on Biaxin, but he suffered from rare side effects from it. (Dec 2013) He can't hear. He was put on a nasal spray. It doesn't seem to work. We are in a more remote area, so it makes it difficult to obtain proper help from the right practitioners.

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Comment from: Mary, 45-54 Female (Patient) Published: December 16

I was first diagnosed with sarcoidosis when I was 36 years old. I first noticed lumps with bruises on both of my calves. Every morning I would wake up with a coughing fit for weeks and then both my knees and feet were swollen to the point I couldn't fit into my husband's size 11 shoes to get to the clinic; the pain in my knees was unbearable when I moved. I had to see a specialist and he told me it could be 10% lung cancer or 90% sarcoidosis and sent me for a biopsy. They removed a piece of my lymph nodes and found out it was sarcoidosis, I had never heard of it before. I was put on prednisone because of fatigue and no energy at all. I had 4 small children to look after back then. Now I'm 51, I developed pneumonia 6 to 8 times in the past 10 years and each time it's was very difficult to bounce back. My last CT scan couple of years back showed I have fibrosis. Now I'm short of breath, simple things like walking is a struggle, severe chest pains at times, no appetite to name a few. I was put back on steroids, inhalers, even put on antidepressant pills to calm me down when I'm struggling to breathe. Prednisone no longer works like it once did.

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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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