Patient Comments: Lupus - Experience

Please describe your experience with lupus.

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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Comment from: carolkirkoconnor@yah, 55-64 Female (Patient) Published: January 13

I think I have lupus for 15 years or more, but not diagnosed till 2012. I always got sick in the fall, a long episode of colds that took forever to get over (immune deficient). I am a registered nurse and had to leave 3 different great jobs due to relentless fatigue. I am 59 now and feel like I lost 15 years of my life, but now I have a diagnosis. I finally ended up with confusion, muscle weakness, pain all over, mouth lesions, and a huge abscess on my arm. I had lupus lesions in my brain and on my skin. I ended up in the burn unit for months, on steroids and chemotherapy, 4 months in the hospital, 1 month at a physiotherapy rehab hospital. I have been home almost 2 years, on CellCept and Plaquenil. Still have fatigue, joint and muscle pain. I want to get back to my former pace and endurance, but I remind myself I am alive. I have a great rheumatologist, my doctors saved my life. I was perfectly functional in December 2011, then by January, a walking zombie, incoherent and in pain and not able to eat or drink. Every lupus patient needs people around them who know who they really are, to pick up on the physical and mental changes that show up. It took 2 weeks before the lupus diagnosis, and I kept deteriorating. Finally once we had the diagnosis, I had to have platelet apheresis before being sent to the burn unit, to care for the skin lesions. This is a tough disease to recognize and diagnose. I had been told I had fibromyalgia, chronic pain, restless leg syndrome, depression and anxiety. IF you have these symptoms, try rheumatology and test for lupus. Don't be put off if you think something more is wrong. I am finally on a treatment plan. I still have days of fatigue, and it takes longer to get over colds etc., but so much better than before. I am not crazy or lazy, just a little pooped now and then.

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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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