Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: Curada64, 45-54 Male (Patient) Published: March 18

I was accidentally diagnosed with sarcoidosis when I was having physical therapy for a back issue. Upon initial exam at physical therapy, a small lump was noticed in my elbow. After a month a progress exam showed that the lump had grown and I started developing a temperature. I went to a surgeon three times in my home town, and was told to stop bothering him and that it was scar tissue and fatty tissue (prior surgeries). After being persuaded by my physiotherapist to get a 2nd opinion, it was removed. Later an MRI of the chest revealed enlarged lymph nodes. I was medicated for almost 3 years with Plaquenil. After nothing showed in x-rays I switched doctors and was told that I was in remission. This is as of January.

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Comment from: LaSeul, 55-64 Female (Caregiver) Published: February 04

I am a 54 year old female. I was diagnosed with sarcoidosis of lungs in 1992. I was tired all the time, lost weight and had a terrible cough. I am presently on oxygen at night, 10 mg of prednisone, and my blood pressure elevated due to the steroids. I am also on Advair Diskus 250 and I do take the albuterol breathing treatments due to having asthma as well. I will tell you that I take 1200 mg of fish oil daily to prevent aching joints and better mobility. I take NAC (N-acetyl cysteine) 600 mg daily for the lungs, Pau d'Arco, and goldenseal/echinacea to build a strong immune system which is very important. I also take chlorella which supplies us with the vegetable intake we need. For those with skin problems; try olive oil. If you can get to a gym visit the sauna to help open up and moisturize your bronchial tubes and sinuses. If on the oxygen, take a long bath while usage of oxygen up to 2 hours to help oxygenize your body. I am doing fairly well. I have to check my heart a little further; I've noticed my heart beats very rapidly after a bit of movement. Learn to pace yourself and please exercise as best you can. Don't be depressed or stressed. Be angry and fight back.

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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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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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