Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: mycousinissick, 45-54 Female (Caregiver) Published: May 12

My cousin is barely 40, with 2 young kids, 8 and 4. She can"t remember the last time she felt well. She is fatigued, exhausted all the time, but is the one cousin always having people over, going to parks, outing, taking her kids to the park, all for the sake of living despite her illness. She has inflamed lymph nodes, it"s now affecting her sight and memory, and she thinks it"s getting worse. The doctor is avoiding steroids due to the harsh side effects. She"s afraid to read any more about how horrid this sarcoidosis is, because there doesn"t seem to be any good news. I think she could use a support group. She would like another opinion. Hoping for everyone's healing.

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Comment from: DonnaMRN, 45-54 Female (Patient) Published: May 09

I was first introduced to sarcoidosis when my brother was diagnosed in his early 20s. All that was said at that time is that it wasn"t cancer and not life threatening. My brother is now 59 and he manages his sarcoidosis well. In 2000 I was working as an emergency room (ER) nurse and had a horrible bout of severe joint pain, shortness of breath, erythema nodosum (EN) over my lower legs, and fevers. I was taken to the ER and initially diagnosed with lymphoma. Then a pulmonologist thought it could be sarcoidosis, I had a mediastinoscopy to remove a nodule between my lungs and it was positive for sarcoidosis. Since that time I have been treated with IV steroids, methotrexate, antidepressants, Plaquenil, oral steroids and most recently Remicade for the all over joint pain. At this point I am resolved that this disease has no clear cut answer. I try to live my life as fully as I can but, am limited by the beast called sarcoidosis. To my fellow sufferers, do not retreat. If your current doctor is not helping, seek another until you get some relief.

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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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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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