Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: Julia, 55-64 Female (Patient) Published: April 16

I have had sarcoidosis for 27 years, developed when pregnant. I did refuse prednisone as first treatment, because of side effects and change in physical appearance. Fatigue was a large problem so I opted for the traditional Chinese herbal medicine for over 10 years with some valuable success. I managed a busy work and life in nursing in an area of oncology and bone marrow transplant. I did take intermittent doses of prednisone but it eventually raised my blood sugars. So I've been prednisone free for 3 years. Now I'm unwell with marked bone pain associated with nausea and vomits. Mentally I'm a bit vague, and I have dull headaches and fatigue. You can win with sarcoidosis; it does go through a cycle, just patience, with treatment either conventional or herbal or both will help. I have been fortunate I have no lung fibrosis, and walking a lot has improved my lung function. Imuran and methotrexate did not help, they increased viral illness and abscess formation. Generally sarcoidosis is a pest but has not stopped me living life well.

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Comment from: Sandra B., 45-54 Female (Patient) Published: March 26

I was diagnosed with sarcoidosis 7 years ago, I was 40 years old. I went to the emergency room (ER) with extreme sweating and belly pain. After being there for just over a week, and running many tests, they gave me my diagnosis. I was put on prednisone for a year. During that year we found out it affected my liver and joints. I was off the steroids for about 2 years when I had another attack. This time it was not just my liver, it was my pancreas and digestive tract. I could not digest my food, it would just sit in my stomach. I lost a lot of weight as I was not able to eat anything for several months, just Ensure. So there was the prednisone again along with a few more to help me digest my food. That was another year on prednisone. That was 3 years ago, I am now having another flare up and the tests are set up for Monday. My skin and lungs are fine. I have had no problems with them from the start. I do have extreme pain all over my body and most days I can barely get out of bed. I also need to be careful about what I eat as I have pancreatitis caused by the sarcoidosis. This disease has disabled me. I used to be very fit and active, I ran, biked, swam, hunt, etc. Now I can do none of these. I keep on hoping for a cure, not just for me, for all of us that has this.

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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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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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