Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Cynthia, 55-64 Female (Patient) Published: March 29

I've had sarcoidosis for more than 20 years and am a caregiver for my mother. My symptoms include hair loss, lung and breathing problems, along with pain in my eyes and back. I hope I can continue with my life.

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Comment from: mags, 55-64 Female (Patient) Published: March 13

I have been experiencing funny turns were I feel very unwell nausiated and have a taste in my mouth I also have dry eyes and mouth and keep developing very large red inflamed lumps on and around my nose when they finaly calm down they leave scarring. .

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Comment from: minnie40, 35-44 Female (Patient) Published: March 08

I have had sarcoidosis for 5 years my doctor said I have a very hard case. I had thyroid cancer before the sarcoidosis. It started with very high fevers weight loss, night sweats and feeling very tired. I went through a battery of testing for every other disease out there. I finally went to a specialist and was told I have this disease.

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Comment from: njguy, 45-54 Male (Patient) Published: February 19

I am a white male 53 years old, and I have had sarcoidosis since 1987. Like many people, I was diagnosed with lymphoma at first, then by a gamma scan and a biopsy it came to sarcoidosis. My symptoms started with night sweats and joint pain. I refused to take steroids when initially diagnosed and still never have, and I believe that has been a benefit. I still have symptoms such as out of breath easily and fatigue. I think most of the management of joint pain and other aches is handled best for me by working out at the gym. I started on a pretty intense regimen about six years ago. Since I don't have the lung capacity to run, I do uphill on treadmill for cardio, and for the last 3 years I have done lots of weight lifting with machines. The weight lifting makes me feel great all day long.

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Comment from: TYB, 45-54 Female (Patient) Published: February 06

I am a 45 year old black woman and was diagnosed with sarcoidosis in 1994. I feel so blessed after hearing some of your experiences, it is very overwhelming. When I noticed several skin lesions my dermatologist did a biopsy. This was followed by a chest x-ray which confirmed my sarcoidosis. These lesions were in my hair, on my face, neck, legs, arms, stomach and buttocks. My doctor injected them with corticosteroid and I was on prednisone and methotrexate for several months. My skin is scarred and I have learned to accept that. Aside from having mininal pain in my knees at times, I workout 7 days a week, including running at least 2 miles. My overall health is great and I feel spectacular. I believe my sarcoid has been dormat for many years now and I pray that it stays that way. And I am doing everything I can to keep it that way.

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Comment from: Slack, 45-54 Male (Patient) Published: January 14

I have had sarcoidosis for about 23 years and have had every test there is done, but now my skin has broke out with a bad rash.

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Comment from: Hope, 25-34 Female (Caregiver) Published: January 07

My daughter was diagnosed at 14 with Pulmonary Sarcoidosis. She had been ill since early childhood with symptoms of Crohns disease but was not diagnosed until she was 12. It took a year for the Sarcoid in her lungs to be identified (by open lung biopsy) at a leading hospital (in England). She is now 33 and in stage IV of the disease. She has been on Humira for her Crohns as well as steroids for the Sarcoid (which I think tipped her into type I diabetes when she was 18). She is now on 24 hour oxygen therapy due to the severe lung fibrosis and has a feeding rack tube for overnight nutrition to boost her weight (as well as normal feeding during the day). She is amazingly courageous and incredibly strong willed. The Medical experts and treatment has concentrated on treating symptoms they really do not understand. I hope and pray further research will lead to better treatments and a more holistic and less closed book approach for all autoimmune disease including the ones that have ravaged my daughter. In the meantime I pray each day for a miracle (and maybe that is what my daughter is) and am now looking at natural nutritional and healing remedies that may assist her.

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Sarcoidosis - Describe Your Experience Question: Please describe your 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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