Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Published: June 05

I was a very active and much younger appearing person up to last fall, when I celebrated my 81st birthday at Thanksgiving my illness began, with fatigue, no appetite whatsoever, no thirst, a dry cough, and I spent about 2 weeks in bed, just existing. Then felt better, spent Christmas in Portland with our children, but there the same symptoms returned. During the drive home I was close to causing an accident several times. Back to bed, with a lasting dry cough, and bad arthritic pain, lost a lot of weight also. Then in Feb 08 the serious stage began. I became so weak, that i would collapse all of a sudden, and then was unable to get up. We had to call 911 twice with trips to the ER. This time I remained in the hospital for one week, with many specialists being consulted. Yet, no Diagnosis and I was sent back home. In early March back to the hospital, this time for 2 weeks, and every conceivable Specialist was called in for consultation. They called me the Million Dollar test baby! And finally back home! The day after that a bone marrow biopsy was ordered, and several days later I finally got the diagnosis: Sarcoidosis. By then I had lost 35 pounds. Now I am being treated by a Rheumatologist, started on a pretty high dose of prednisone, and a miracle happened, the next morning I awoke free of all pain, and with some energy! By now I am down to 30mg of Prednisone, but start having the arthritic pains, also am short of breath after the slightest exertion, also after talking. My Dr. appointment is tomorrow, so I will report all. After reading a lot on this condition, I see that most people are in their 30th or 40th when this begins, and I am twice their age. But since I had bouts of arthritis on and off since my 30th, all through my life, it might have been a forerunner of the serious condition I now have?

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Published: June 03

My problem with Sarcoidosis actually started with Uveitis. After 2 years of treatment for that (Prednisone Drops), an Ophthalmologist in Columbus, Ohio decided to check for Sarcoid condition. I take Prednisone 10mgs a day, have had a lentectomy and a vitrectomy on my Right eye and will probably have to have it on my left. I always know when I am getting an "occurrence" because I get unbelievably tired. Usually, when I feel this way I take off from work and rest. All this happened just one day in 2001 (3 months before my 41st birthday) when I awoke with a red and light sensitive eye (I thought I had pink eye). I remember thinking back that I always had little coughing spells (where I had difficulty breathy and a dry cough) but it didn't last long.

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Published: June 03

I feel tired and weak all the time although I use to be a very active and focused person. I can't remember very well and constantly feel that I need to see a doctor. At first I thought it was low blood sugar or blood pressure but all of those things are 100%. The doctors can't find anything wrong with me. I've decided to accept how I feel and just live with it. The problem is that when I do develop a "real" illness I will properly wait until it's to late to see a doctor. I've been on cortisone treatments twice. The first time I got T.B and had to have a brain operation to remove a T.B abscess. Since my op I've gained A LOT of weight and can't seem to stop eating.

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Published: May 29

I was diagnosed with auto-immune hepatitis at age 16.I was on predisone for 26 years. After going off prednisone, I went through terribly painful symptoms and was given a diagnosis of Fibromyalgia. That was in 1996. I was prescribed Elavil, Lasix and Tylenol #3. In 2000 my Ophthalmologist took me of contact lenses because the veins in my eyes were enlarged In 2004 I suddenly developed rashes and spots on my legs/shins and the skin on my face around my cheeks visibly darkened. I had chest tightening and dry cough and very itchy skin on my calves and shins In 2006 my joints were very achy and sore all the time. My wrists esp. would swell and ached for days at a time. In 2007 my wrists hurt so bad I had to go to the hospital's emergency dept. Wrists were xrayed and lesions were seen on the left wrist xray. I had bone scans, MRIs but no-one could diagnose what the lesions were. My orthopedic surgeon finally performed an open biopsy. Cancer was eliminated and though no diagnosis was arrived at I was told the bone had degenerated and splintered. A year later I was referred to an Internist who confirmed the diagnosis of sarcoidosis after the ACE blood test. This was in 2008 a year after the biopsy. I refused to go on prednisone or naproxen. I have horrible purple bruises on my shins and take between 4-6 Tylenol #3 daily. Are all the conditions related and will sarcoidosis be the final diagnosis or will it develop into something more debilitating and sinister? What should I look for next? Sorry for the lengthy comment but I believe it is important for you to know what lead to this current diagnosis.

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Published: May 29

A friend bakes donuts for a living & has developed a yeast infection of the lungs & over the last 5-6 years has been hospitalized 3 times. He is currently in the hospital for pneumonia. Symptoms are chronic coughing, spitting white sputum, weight loss & fatigue.

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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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