Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: Lucky, 55-64 Female (Patient) Published: May 02

I am a 57 year old female. I was just recently diagnosed with sarcoidosis. My first symptoms were almost a year ago. I attributed my fatigue and night sweats to stress and menopause. I am a nurse and used to be very active. When I started getting short of breath with normal activity I knew something more was wrong. I am lucky to work for a great Medical Center. It took only about 7 weeks to confirm this. I visited my primary care physician first and then the doctors got the ball rolling. I ended up having a lymph node biopsy by a thoracic surgeon. All of the lymph nodes in my chest are 2 to 3 times their normal size. I also have spleen and liver involvement. While in the hospital I developed cardiac arrhythmia. So far no skin or eye involvement. I do have increased joint pain especially in the feet and ankles. All the things I have read makes me scared. Worried about heart involvement, diabetes, bone density, weight gain.

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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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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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