Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: scared68, 65-74 Female (Patient) Published: May 24

My mom is 68, vibrant, energetic, full of life, and a busy bee. Three months ago she got sick which led almost to her demise and the abdominal aortic aneurysm was discovered. Four weeks ago, she had the surgery to repair, and she came out of recovery nauseated and stomach feeling as if she was going to have a severe bowel movement. She has had another stay in the hospital for 4 days, seen a gastroenterologist, her family doctor and it's been discovered she has an ulcer at the point where the esophagus meets the stomach and among this there were 9 places biopsied in areas in her stomach and throat. She is at the emergency room again with vomiting and abdominal pain. Seems all her symptoms are on the wrong side of the discovery. It's really odd that none of these were bothering her before the surgery.

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Comment from: marlyn, 75 or over Female (Patient) Published: March 23

My son received plasma exchange for his encephalopathy and it worked well. But that was 16 months ago and he is still left with some brain damage.

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Comment from: sherry, 25-34 Female (Patient) Published: November 13

I have just been diagnosed with PBC (primary biliary cirrhosis). My problems started with an initial diagnosis of diverticulitis. I had extreme pain in the right side, but also pain in my back on both sides. The first round of antibiotics didn't work so I got a second round, then a third. Then they did a colonoscopy which confirmed the diverticulitis. I still had pain and diarrhea that went on for 3 months and they finally did a stool sample which showed that I had Clostridium difficile. After 14 days of Flagyl, I finally started feeling better. I lost 20 lb. rapidly during this time and am still losing. Blood tests showed abnormal liver enzymes and kidney levels. I had bloodwork every month with the last time being extensive and showed the PBC. I'm taking ursodiol 500 mg twice a day. Most recently I had a bladder infection 2 weeks ago and just called the doctor because I have another one. I only have one kidney so I am very concerned that the treatment of the PBC may cause damage to my kidney.

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Comment from: joy, 75 or over Female (Patient) Published: June 30

I was diagnosed at 80 years of age with fluid in lungs. I was put in hospital and found to have 2 liters of fluid in lungs. Doctors did not know I had lupus at that time. Blood test tested positive for lupus. I have been on low dose of prednisone for 6 years, right now 5 milligrams every other day. I have a very mild case of lupus. Prednisone has controlled my lupus. I sometimes have a flare, but not very often. I understand what lupus can do to me. I live with it.

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Comment from: 55-64 Female (Patient) Published: June 15

I was first diagnosed with discoid lupus at the age of 34. I had skin rashes that got worse when in the sun, but that's all. Ten years later I was diagnosed with SLE (systemic lupus erythematosus). I suffer from RA (rheumatoid arthritis) in both hands, my knees are very painful as I also have degenerative arthritis as well as lupus. I am always tired and in pain. I go to pain management and am taking Plaquenil twice a day, meloxicam, and assorted pain medications. Most days I can barely walk.

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Comment from: Shabnam, 19-24 Female (Patient) Published: March 08

It is very difficult to live with lupus.

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Patient Comments

Viewers share their comments

Lupus - Symptoms Question: The symptoms of lupus can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Lupus - Treatment Question: What kinds of treatment have you received for your systemic lupus?
Lupus - Diet Question: Have dietary changes helped with your lupus symptoms and signs?
Lupus - Prognosis Question: Please describe your lupus prognosis.

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