Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Published: July 01

I was 57 when I was finally diagnosed. I was coughing uncontrollably and losing a pound a day. I was dizzy and falling down. I had night sweats and some fever. They thought it was lymphoma, but when they did the biopsy they found sarcoidosis. I was put on strong prednisone for a while and the dose lessened until a year had passed. I developed diabetes from the sarcoidosis. My blood sugar went into the 500s. I am better now, but I'm not sure what other things are from the sarcoidosis.

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Published: June 25

I was diagnosed with Sarcoid in 2003 at age 25. I was always a healthy, white female. What they thought was pneumonia that didn't go away after 6 weeks of medicine they did further testing. I had knots on my knees and ankles. They decided to remove my lower left portion of my lung because it was destroyed with infection and lymph nodes removed. I also developed Sarcoid in my eyes. I am now showing signs of glaucoma at age 31. I am not currently on any medication but it's a very scary disease because it could come back and anytime and they do not know the cause.

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Published: June 25

I have had a chronic cough for 15 months, sweats, weight loss, loss of appetite, "shattered lung" CAT Scan, 2 different lung surgeries and the list goes on. I have nearly every single symptom that is on this site and I am still undiagnosed. Three special field doctors now fear that it is now in my heart but will not order the proper tests or send me to the proper doctor nor admit me. The last doctor stated that my lungs where not functioning properly, that was last week. No tests ordered, no ambulance. I was having a hard time breathing, blood pressure was high and so was my pulse. I am disgusted with the medical community. I have some 15 doctors right now and no one is willing to do a thing. I have chronic EN on my legs. I am in so much pain and so tired. I wish I could get help, now. I hope you have a better story.

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Published: June 17

I was diagnosed with this disease 7 years ago. I am 38 and an African American female. I have just been told that new health issues I am dealing with have been contributed to this disease showing itself in my colon and abdominal area. I suffer from a hip deterioration due to prednisone use.

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Published: June 17

I was diagnosed with this disease 7 years ago. I am 38 and a african american female.I have just been told that new health issues i am dealing with have been contributed to this disease showing itself in my colon and abdominal area. I suffer from a hip deterioration due to prednisone use. I am miserable.

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Published: June 12

I work in a welding shop, I don't weld very much anymore, in my work area there is a lot of brake cleaner used. When I breathe this I have an instant shortage of breath and instant headache. I was just told I have sarcoidosis.

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Published: June 09

Has anyone had experience with Plaquenil reducing pain but exhibiting severe personalities changes after being on the drug for a month. It helps my husbands pain and ambulation but he has become a manic person with very little insight into his actions or others feelings. Saying very cruel comments to loved ones is very hard to take. Did anyone have similar problems on the drug. My husband did just as well on Methotrexate with no behavioral changes but the specialist thought they would start with the Plaquenil.

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Published: June 09

I have had disseminated histoplasmosis for over ten years lately. I have been told that I now have sarcoidosis is it possible for sarcoidosis to be mistaken for histoplasmosis?

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Patient Comments

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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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