Patient Comments: Lupus - Experience

Please describe your experience with lupus.

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: Laura, 55-64 Female (Patient) Published: September 23

I was first diagnosed with Lupus at age 16, I am now 63. My first symptoms occurred after a bout with the flu. I had extreme fatigue and weakness that wouldn't go away. Prior to the flu I had hand and knee pain and swelling that wouldn't go away. My parents thought it was growing pains. Within a week of having the extreme fatigue I developed the butterfly rash on my face. It was then that I was diagnosed with lupus. Further testing proved it. I was started on prednisone and Imuran which was experimental at that time. I was on medication for three years including the weaning off of the prednisone. I still have lupus but was symptom free all these years until last week, when I began to have a flare up. I woke up one morning with extreme pain and weakness in my arms. I had been struggling with fatigue but contributed that to working 12 hour shifts in a busy urgent care clinic as a nurse. The ANA I had done shows that I am having a flare up. I have been very fortunate to have had a normal life for so many years. I have learned to take one day at a time. And will continue to do so.

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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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