Patient Comments: Lupus - Experience

Please describe your experience with lupus.

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: Mommarobey, 55-64 Female (Patient) Published: August 26

I was diagnosed with systemic lupus erythematosus (SLE) 20 years ago. Only in the last year do I have severe skin rash on chest, shoulders and back. Ten days ago I thought I had a sciatic episode which only lasted 12 hours. Now my feet are somewhat numb and tingling. I haven't been on any medications for several years and due to loss of insurance didn't even have medical care, now I must find a doctor. When first diagnosed with lupus I was on prednisone 5 mg daily and 250 mg of hydroxychloroquine 2 times daily. I am waiting for my doctor's appointment. Wondering what's ahead. Feeling fearful.

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Comment from: Patient from Kosovo, 25-34 Female (Patient) Published: May 09

I would like to share my experience as a lupus patient. I was diagnosed on December 2012, they told me this came during my pregnancy. After 1 year, I decided to go through a very strong diet, which contains everything natural (vegetables and fruits) with the exception of meat and milk products such as cheese, yogurt, etc. At the same time I replaced all these foods with the vitamins. Now, ANA is decreasing and Anti DNA is better than the past. Also C3 is perfect. The doctor told me "you stopped the process" and I will happily say this diet was a success, I have no lupus anymore.

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Comment from: kidsr1, 45-54 Female (Patient) Published: March 17

I have had lupus for 13 years. It took 4 years to diagnose it. My blood tests did not show the normal results for a positive lupus test but the doctor said let's try you on Plaquenil. I responded to the Plaquenil so we decided I have lupus. I was doing fine with no flare ups until last March when I was hospitalized for pain management. I now have a positive ANA and low C3 as well as a low Vitamin D. I have recently been struggling with severe hip muscle and knee pain. I am on steroids and I can"t seem to get an answer from any doctor to explain my severe pain in the knees and hips. My CRP does not indicate inflammation. I am looking to see if anybody has been able to receive a diagnosis for severe muscle pain without inflammation factors in the blood.

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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?

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