Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: Spotohunny, 45-54 Female (Patient) Published: May 02

I have what doctors call lupus. The pain is always worse with medication. My arrogant young doctor claims he never heard of such a thing. Why would medication cause me more pain than the disease!

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Comment from: lucy kiogora, 35-44 Female (Patient) Published: April 23

I was diagnosed with lupus last year, 2013. I had trickling while walking, butterfly rashes on my face, palms of my hands were dark with sores, ulcers in my nose, painful muscles, fatigue and joint pains. I am on prednisolone drugs. This condition rely destabilized my life but now I am more informed on the same.

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Comment from: maano, 19-24 Female (Patient) Published: April 14

I am 21 years old and a medical student suffering from SLE (systemic lupus erythematosus). Two years back in December 2012 I was attacked by Stevens-Johnson syndrome. After recovering from this, SLE assaulted me, and since then am suffering from it. At this time half of my kidney is damaged. Doctor has prescribed me Cellcept for kidney in addition to my other dose for SLE.

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Comment from: Carol, 55-64 Female (Patient) Published: August 09

I was diagnosed with Lupus in 1999. I have taken Hydroxychloriquine since then. I have had no symptoms in 11 years. I recently moved to Florida and have a new Doctor, well after Blood Tests, they tell me I am in Remission and have no signs of Lupus, that it is gone and I should stop taking the meds. For right now I am still taking the meds, scared to stop. Me first Doctor said no cure for Lupus that I will always have it, but it was low key, but new doctor says it is gone! Happy Days I hope, but I am scared!

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Comment from: sfruth, 65-74 Female (Patient) Published: February 28

I am a registered nurse who contracted norovirus on a cruise. I quickly developed sleeping in my hands and fingers, and joint overgrowth and stiffness. A year went by, and a reduction in force at my job resulted in an assignment to a different position which involved a change in work hours and a much higher level of stress. Symptoms exacerbated until my doctor ordered some tests, and I had an extremely elevated ANA. Referral to a rheumatologist led to diagnosis of lupus 1 1/2 years after my initial symptoms.

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Comment from: mytiger, 55-64 Female (Patient) Published: October 08

I have just been diagnosed with lupus. I have had fibromyalgia for 15-20 years diagnosed by my rheumatologist with chronic fatigue and all over painful joints and muscles. I also was diagnosed with neuropathy of the feet and degenerative disc and joint disease. Now my hands and fingers hurt as well as back and hips and my eyesight is getting bad. My skin started looking bad with bruising and spots and rash so my doctor tested me for lupus.

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Comment from: Sherry, 45-54 Female (Patient) Published: November 16

I was diagnosed on September 6, 2007 at the age of 43 by an internist. I started getting sick feeling on July 1, 2007 after moving. My joints swelled up and I was in extreme pain. At first I put it to moving too much too fast but as time progressed, my symptoms got much worse including sores in my hair and mouth and nose. I was not able to get out of bed because of pain and fatigue. I finally went to the family doctor and said "You better help me because I'm dying!!" I was in the internist's office for 10 minutes and he said I had lupus. He sent me across the street to the hospital for iv prednisone. Within the first five minutes of receiving that, I started to feel better. Four years later, the azathioprine slowly stopped working; I have had a constant flare for four months. I have now been put on cellcept (which is very expensive but I have group coverage of 80%) and four days later, I am almost pain free and I have energy. On the third day I had energy for the first time in what seemed like forever. I was able to make dinner, unload the countertop dishwasher and reload it, hand wash dishes that I hadn't had energy to do for a week, sorted and did laundry and cleaned my kitchen. I don't feel like a lazy person anymore and I can move relatively pain free. Today was my first day at work since starting these meds and I got home and don't feel so exhausted that I can't do anything. I love it!!

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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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